Gibson F, Shipway L, Aldiss S, Hawkins J, King W, Parr M, Ridout D, Verity R, Taylor RM (2013) Exploring the work of nurses who administer chemotherapy to children and young people., Eur J Oncol Nurs 17 (1) pp. 59-69 Elsevier
PURPOSE OF THE RESEARCH: To explore the knowledge, attitudes and beliefs of nurses who administer chemotherapy to children and young people. METHODS AND SAMPLE: A national postal survey of nurses working within the 21 cancer centres in the United Kingdom and Ireland. The questionnaire included 25-items addressing the attitudes, beliefs and concerns regarding nurses' roles, support mechanisms and educational preparation related to administration of chemotherapy. RESULTS: In total 286/507 (56%) questionnaires were returned. The majority of nurses worked in inpatient +/-outpatient (78%) settings and most gave chemotherapy on a daily basis (61%). The median time working in oncology was 10 [range 0.5-32] years and time administering chemotherapy was 8 [0.1-32] years. Aspects of administration that caused the most worry included treatment side-effects, extravasation, dealing with allergic/anaphylactic reactions and knowledge deficits in colleagues. There was no significant difference in worry according to level of nurse education but those with an oncology qualification had less Knowledge-related worry (p = 0.05). There was no difference in attitude according to level of education or having an oncology qualification. There were significant correlations between time qualified, time working in oncology and the number of years administering chemotherapy and the worry domains (ranging from r = -0.14 to r = -0.24, p
OBJECTIVES: To provide international consensus on the competencies required by healthcare professionals in order to provide specialist care for teenagers and young adults (TYA) with cancer. DESIGN: Modified e-Delphi survey. SETTING: International, multicentre study. PARTICIPANTS: Experts were defined as professionals having worked in TYA cancer care for more than 12?months. They were identified through publications and professional organisations. METHODS: Round 1, developed from a previous qualitative study, included 87 closed-ended questions with responses on a nine-point Likert scale and further open-ended responses to identify other skills, knowledge and attitudes. Round 2 contained only items with no consensus in round 1 and suggestions of additional items of competency. Consensus was defined as a median score ranging from 7 to 9 and strength of agreement using mean absolute deviation of the median. RESULTS: A total of 179 registered to be members of the expert panel; valid responses were available from 158 (88%) in round 1 and 136/158 (86%) in round 2. The majority of participants were nurses (35%) or doctors (39%) from Europe (55%) or North America (35%). All 87 items in round 1 reached consensus with an additional 15 items identified for round 2, which also reached consensus. The strength of agreement was mostly high for statements. The areas of competence rated most important were agreed to be: 'Identify the impact of disease on young people's life' (skill), 'Know about side effects of treatment and how this might be different to those experienced by children or older adults' (knowledge), 'Honesty' (attitude) and 'Listen to young people's concerns' (aspect of communication). CONCLUSIONS: Given the high degree of consensus, this list of competencies should influence education curriculum, professional development and inform workforce planning. Variation in strength of agreement for some competencies between professional groups should be explored further in pursuit of effective multidisciplinary team working.
Soanes L, Hargrave D, Smith L, Gibson F (2009) What are the experiences of the child with a brain tumour and their parents?, EUROPEAN JOURNAL OF ONCOLOGY NURSING 13 (4) pp. 255-261 ELSEVIER SCI LTD
Gibson F, Garnett M, Richardson A, Edwards J, Sepion B (2005) Heavy to carry: a survey of parents' and healthcare professionals' perceptions of cancer-related fatigue in children and young people., Cancer Nurs 28 (1) pp. 27-35
Cancer-related fatigue is a prevalent, but often under-recognized, symptom with the potential to impact the lives of both the child and the family. There is little known about the biological and the behavioral dimensions of fatigue, and not about the patterns of this symptom. The aim of this study was to investigate cancer-related fatigue from the perspective of parents of children and young people with cancer and from the perspective of healthcare professionals (HCPs) and to examine its impact on quality of life. A cross-sectional, questionnaire-based survey was undertaken with parents of patients attending 4 of the 22 United Kingdom Childhood Cancer Study Group centers; HCPs from 20 of these centers were also surveyed. Response rates were 42% for parents and caregivers (95/224) and 35% for HCPs (235/679). Results showed that fatigue was prevalent. Fifty-six percent of HCPs thought "most" or "all" patients experienced moderate fatigue; 57% of parents said that the patient experienced fatigue at least once a week. Data demonstrate that fatigue was perceived to be a significant problem by parents and HCPs. Healthcare professionals indicated that the mean percentage of patients who experience fatigue, to whom they recommended a treatment, was 29%. Rest and relaxation were recommended by the majority (59%; 138). The overall impression is that both HCPs and parents acknowledge that children and young people are likely to experience fatigue. Recognition of the significance of this symptom is a crucial first step in improving future management and offering strategies that can help both child and family.
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been described or documented. This paper presents data from a UK-wide study that sought to understand the family experience of supporting a child with the rare degenerative LLCs of MPS and Batten disease. The aim of this paper is to report sibling experiences related to these rare degenerative and progressive conditions, in order to inform the future development of supportive interventions. Eight siblings of children with MPS (n = 7) and Batten Disease (n = 1) participated in semi-structured qualitative interviews. A card sort technique was utilised to support and engage the children. Siblings are clearly impacted emotionally, pragmatically and relationally by the ill health of another child in the family. The data indicate four key themes which demonstrate impacts on siblings: perceptions of the condition and its symptoms, impact on daily life, emotional consequences and ways of coping. Siblings often had considerable knowledge of the condition and took on important roles in symptom management. However, these experiences were in the context of managing relationships within the family (often protecting parents from an awareness of how much they knew) and relationships at school (including distraction from learning and being bullied by peers). The data highlight how sibling experiences are generated through a combination of negative disability discourses and support through peers and family members. The data indicate how these features shift as a consequence of witnessing the advancement of their brother's or sister's condition and the emotional sequelae of disease progression. Exploration of siblings' experiences of living with such rare progressive and degenerative LLCs suggest the focus of interventions to support this group should address their emotional health and ways to overcome isolation and build connections with other siblings who share their unique experiences. Critically, the data suggest that sibling support should be cognisant of the trajectory of the illness as well as the family, school and peer relational contexts that siblings inhabit.
Fern LA, Birch R, Whelan J, Cooke M, Sutton S, Neal RD, Gerrand C, Hubbard G, Smith S, Lethaby C, Dommett R, Gibson F (2013) Why can't we improve the timeliness of cancer diagnosis in children, teenagers, and young adults, BMJ 347 BMJ Publishing Group
Gibson F, Aldiss S, Taylor RM, Maguire R, McCann L, Sage M, Kearney N (2010) Utilization of the medical research council evaluation framework in the development of technology for symptom management: The ASyMS©-YG study, Cancer Nursing 33 (5) pp. 343-352
Background: Technology is becoming an important medium for supporting patients in health care. However, successful application depends on user acceptability. The Advanced Symptom Management System (ASyMS©) involves patients reporting cancer chemotherapy-related symptoms using mobile phone technology. Objective: The aim of this article was to report a study of how young people were involved in the development of ASyMS© using the Medical Research Council framework for evaluating complex interventions. Methods: A convenience sample of young people aged 13 to 18 years undergoing cancer chemotherapy were recruited from 2 principal cancer treatment centers in London. Results: In phase 1, young people selected 5 symptoms from an adapted version of the Memorial Symptom Assessment Scale that were most important to them. In phase 2, young people completed the ASyMS©-YG PDA (personal digital assistant) questionnaire daily on days 1 to 14 of a cycle of chemotherapy and pre/post-use questionnaires. In phase 1, 5 young people chose diarrhea, nausea, vomiting, constipation, and weight loss as the most important symptoms. In phase 2, 25 young people reported positively to using PDA technology, found ASyMS©-YG simple and easy to complete, and liked that they were monitored at home. In addition to the 5 core symptoms, the ASyMS©-YG reports showed the number (n = 37) of other symptoms young people experienced. CONCLUSIONS:: This early development work indicates the acceptability of ASyMS©-YG and has informed an exploratory trial (phase 3) and randomized controlled trial (stage 4). Implications for practice: This study reaffirms the importance of promoting communication between young people and health professionals. Copyright © 2010 Lippincott Williams & Wilkins.
Nelson W, Gibson F, Hayden S, Morgan N (2001) Using action research in paediatric oncology to develop an oral care algorithm., Eur J Oncol Nurs 5 (3) pp. 180-189
The concurrent use of an oral assessment guide and oral care algorithm proved valuable in providing a more consistent approach to the oral care of children on a particular paediatric oncology ward (Gibson et al. 1997). However, as action research was chosen to develop practice, the diagnosis of new problems was anticipated. The identification of problem areas arose from two sources-informal feedback from the practice setting and via a formal audit using a tripartite approach consisting of a structured interview, vignettes and an analysis of existing documentation. The findings firstly demonstrated that practitioners experienced problems associated with the interpretation of the information contained within the existing algorithm. Secondly, there was also strong evidence to show that the production of a second 'therapeutic' algorithm would be beneficial to patient care. Finally, to ensure clarity, minor changes were required to the oral assessment guide. By using a collaborative approach between researchers and practitioners a positive resolution to a commonly identified clinical problem was expedited.
Soanes L, Gibson F, Hannan J, Bayliss J (2003) Establishing nursing research priorities on a paediatric haematology, oncology, immunology and infectious diseases unit: involving doctors and parents., Eur J Oncol Nurs 7 (2) pp. 110-119
Following a Delphi survey undertaken with nurses on a specialist children's unit to identify priorities for nursing research, this paper outlines the results of a survey to ascertain the views of doctors and parents regarding the results of the Delphi. This approach was in keeping with national guidance on multi-professional working in paediatric oncology and the importance of service-user involvement in planning and evaluating care. Convenience samples of doctors (n=16) and parents (n=10) were asked to rank the priorities previously identified by nurses. Results highlighted that in the main, nurses, doctors and parents agreed on the key areas that should take priority for research. Nurse's knowledge of day-to-day symptom management, children's quality of life, negotiation and communication in relation to care provision were identified by all three groups as high priorities. There were some areas where the views varied: this was generally in relation to the different primary focus of the individual groups-parents being very concerned with the effect of daily ward routines and procedures and their child's overall hospital experience, nurses with issues such as staff retention and morale, whereas doctors were more concerned with issues around information giving and consent to treatment. Limitations of the study, including sample selection and the transient nature of the population involved are discussed within the paper. The paper concludes that all three groups shared similar views, being focused on issues directly related to patient care. Consensus between the groups should result in future research initiatives reflecting a shared focus and responding to an identified need.
Gibson F (2012) Value of interaction., Nurs Child Young People 24 (7)
Taylor RM, Fern L, Whelan J, Pearce S, Grew T, Millington H, Ashton J, Brooman K, Starkey C, Gibson F (2011) "Your Place or Mine?" Priorities for a Specialist Teenage and Young Adult (TYA) Cancer Unit: Disparity Between TYA and Professional Perceptions., J Adolesc Young Adult Oncol 1 (3) pp. 145-151
PURPOSE: To identify key components of a specialist teenager and young adult (TYA) cancer unit from the perspective of young people and health professionals. PATIENTS AND METHODS: A facilitated workshop was held in England at which participants prioritized 15 core features of a specialist cancer unit identified in a literature review. Themes were transferred onto cards and organized using a pyramid. Notes were made of the discussion and how decisions were reached. The exercise was repeated in a survey at a patient conference. Data were analyzed by weighting the ranked position and by content analysis. RESULTS: Eleven young people and 22 health professionals attended the workshops, and 64 young people completed the survey. Young people's top three priorities were a dedicated unit, contact with peers, and provision for partners/parents to live in the unit with them. Health professionals prioritized best chance of survival and best quality of life, access to expertise, access to computers/Internet, and age-appropriate equipment. CONCLUSIONS: Priorities varied across and within healthcare professionals and young people, and were dependent on viewpoint and personal experience. This is an essential first step toward a fuller description of the benefit of specialist TYA cancer services and highlights the importance of consulting users in service development.
Di Giulio P, Arnfield A, English MW, Fitzgerald E, Kelly D, Jankovic M, Gibson F (2013) Collaboration between doctors and nurses in children's cancer care: Insights from a European project, European Journal of Oncology Nursing (EJON) 17 (6) pp. 745-749 Elsevier
Purpose: It has long been recognised that effective cancer care is not possible without multi-professional
team working. Collaboration and multi-professional working however are known to be less than
straightforward. This project aimed to use a collaborative approach to explore and facilitate professional
groups to work together more effectively in the field of children?s cancer care.
Method: Based on an earlier project in Italy, a three-year seminar series was organised involving both
a doctor and nurse from 15 paediatric haematology/oncology units across Europe. Participants had to be
able to speak English and commit to participate in annual seminars as well as the development and
implementation of a local project to enhance doctorenurse collaboration in their own unit. Appreciative
Inquiry was the methodological approach used to address organisational as well as interpersonal change.
Results: Fifteen doctorenurse teams were initially selected from a range of different countries, and 10
completed the project. Key outcomes reported include implementation and successful completion of
projects, publication of the results achieved, participant satisfaction with improvements in collaboration.
Feedback from participants would suggest that change had been implemented and possibly sustained.
Conclusions: Active involvement and group support were required for success. More formal relationships
needed to be activated with participating centres to guarantee support for those involved in implementing
lasting change. A web-based resource to allow other programmes and centres to use the
resources developed has been made available. The same approach, we believe, could be used to improve
multi-professional working in the care of other childhood illnesses
Bate J, Gibson F, Selwood K, Skinner R, Phillips B, Chisholm JC (2013) A reaudit of current febrile neutropenia practice in UK paediatric oncology centres prior to implementation of NICE guidance, ARCHIVES OF DISEASE IN CHILDHOOD 98 (4) pp. 315-316 BMJ PUBLISHING GROUP
Fern LA, Taylor RM, Whelan J, Pearce S, Grew T, Brooman K, Starkey C, Millington H, Ashton J, Gibson F (2013) The Art of Age-Appropriate Care: Reflecting on a Conceptual Model of the Cancer Experience for Teenagers and Young Adults, Cancer Nursing 36 (5) pp. e27-e38 Wolters Kluwer Health
Background: There is recognition that teenagers and young adults with cancer merit age-appropriate specialist care. However, outcomes associated with such specialist care are not defined. Patient experience and patient-reported outcomes such as quality of life are gaining importance. Nevertheless, there is a lack of theoretical basis and patient involvement in experience surveys for young people.
Objective: We previously proposed a conceptual model of the lived experience of cancer. We aimed to refine this model adding to areas that were lacking or underreported. The proposed conceptual framework will inform a bespoke patient experience survey for young people.
Methods: Using participatory research, 11 young people aged 13 to 25 years at diagnosis, participated in a 1-day workshop consisting of semistructured peer-to-peer interviews.
Results: Eight core themes emerged: impact of cancer diagnosis, information provision, place of care, role of health professionals, coping, peers, psychological support, and life after cancer.
Conclusions: The conceptual framework has informed survey development for a longitudinal cohort study examining patient experience and outcomes associated with specialist cancer care.
Implications for Practice: Young people must be kept at the center of interactions in recognition of their stated needs of engagement, of individually tailored information and support unproxied by parents/family. Age-appropriate information and support services that help young people deal with the impact of cancer on daily life and life after cancer must be made available. If we are to develop services that meet need, patient experience surveys must be influenced by patient involvement. Young people can be successfully involved in planning research relevant to their experience.
McGuire DB, Fulton JS, Park J, Brown CG, Correa MEP, Eilers J, Elad S, Gibson F, Loree K, Oberle-Edwards L, Bowen J, Lalla RV (2013) Systematic review of basic oral care for the management of oral mucositis in cancer patients, Supportive Care in Cancer 21 (11) pp. 3165-3177 Springer Berlin Heidelberg
The purpose of this project was to evaluate research in basic oral care interventions to update evidence-based practice guidelines for preventing and treating oral mucositis (OM) in cancer patients undergoing radio- or chemotherapy.
A systematic review of available literature was conducted by the Basic Oral Care Section of the Mucositis Study Group of MASCC/ISOO. Seven interventions?oral care protocols, dental care, normal saline, sodium bicarbonate, mixed medication mouthwash, chlorhexidine, and calcium phosphate?were evaluated using the Hadorn (J Clin Epidemiol 49:749?754, 1996) criteria to determine level of evidence, followed by a guideline determination of one of the following: recommendation, suggestion, or no guideline possible, using Somerfield?s (Classic Pap Cur Comments 4:881?886, 2000) schema.
Fifty-two published papers were examined by treatment population (radiotherapy, chemotherapy, and hematopoietic stem cell transplant) and by whether the intervention aimed to prevent or treat OM. The resulting practice suggestions included using oral care protocols for preventing OM across all treatment modalities and age groups and not using chlorhexidine mouthwash for preventing OM in adults with head and neck cancer undergoing radiotherapy. Considering inadequate and/or conflicting evidence, no guidelines for prevention or treatment of OM were possible for the interventions of dental care, normal saline, sodium bicarbonate, mixed medication mouthwash, chlorhexidine in patients receiving chemotherapy or hematopoietic stem cell transplant, or calcium phosphate.
The evidence for basic oral care interventions supports the use of oral care protocols in patient populations receiving radiation and/or chemotherapy and does not support chlorhexidine for prevention of mucositis in head and neck cancer patients receiving radiotherapy. Additional well-designed research is needed for other interventions to improve the amount and quality of evidence guiding future clinical care.
Gibson F, Fletcher M, Casey A (2003) Classifying general and specialist children's nursing competencies., J Adv Nurs 44 (6) pp. 591-602
BACKGROUND: Whilst there is evidence in the literature to support the continuation of a children's nursing qualification, the distinction between generalist and specialist nursing is insufficiently comprehensive to distinguish children's nursing from other branches of nursing. AIM: To develop a definition of children's nursing and specialist children's nursing in terms of competencies as the basis for differentiating them from other forms of nursing. DESIGN: A multi-method comparative design incorporating a case study approach was used. This included a nominal group technique, focus groups, Delphi survey and semi-structured interviews. Two arms of data collection were undertaken concurrently (during 1998-2000) with children's nurses (n = 146) and specialist children's nurses (children's cancer nurses, n = 37) from a number of centres in the United Kingdom (UK). FINDINGS: The holistic competencies developed from the data exposed characteristics of knowledge, skills, abilities, values and qualities displayed in the context of professional work for both groups of nurses. A classification of competencies was developed inductively from the data by two independent researchers through the labelling, defining and ordering of competencies. The resulting hierarchy of competencies and sub-competencies illustrates relationships between children's nurses and specialist children's nurses and provides a detailed definition of children's nursing and specialist children's nursing. CONCLUSION: There is a significant common element in these two areas of nursing practice, and generalist preparation in children's nursing is the foundation of specialist children's nursing practice. Generalist knowledge and skills are expanded in specialist practice and there is also evidence of specialist practice that is beyond the scope of general nursing practice.
Edwards JL, Gibson F, Richardson A, Sepion B, Ream E (2003) Fatigue in adolescents with and following a cancer diagnosis: developing an evidence base for practice, EUROPEAN JOURNAL OF CANCER 39 (18) pp. 2671-2680 PERGAMON-ELSEVIER SCIENCE LTD
Gregorowski A, Brennan E, Chapman S, Gibson F, Khair K, May L, Lindsay-Waters A (2013) An action research study to explore the nature of the nurse consultant role in the care of children and young people., J Clin Nurs 22 (1-2) pp. 201-210 Wiley
AIMS AND OBJECTIVES: An action research study was undertaken to explore the development of the nurse consultant role when caring for children and young people. BACKGROUND: Five nurse consultants in different areas of specialist care in a tertiary paediatric hospital undertook the study when implementing the new role of nurse consultant into the hospital. METHODS: Action research meetings took place over a year. The nurse consultants then collated and analysed data using thematic analysis during the second year. A research fellow facilitated meetings, carried out participant observation, and coordinated the action research project. RESULTS: Data analysis revealed 22 subthemes grouped into four overarching themes: shaping the role; shaping child-centred care through consultancy; taking responsibility for practice; and leadership. These roles and their ease and complexity within the nurse consultant role are examined in further detail in this paper. Balancing the four key components in a newly developing role was initially complex and required support. Over time the nurse consultants developed the necessary skills to perform fully in all areas. A major challenge was developing the research role, a key function of the nurse consultant role. By the end of the study, all nurse consultants were actively embarking upon their own research either in preparation for or as part of Doctoral studies. CONCLUSIONS AND RELEVANCE TO CLINICAL PRACTICE: While there are many similarities with nurse consultants in adult practice, one major difference was the nurse consultant role in supporting families when caring for children and young people. This meant having a three-way communication style: with the family, the child/young person, and other healthcare professionals. This communication style was observed by the research fellow in participant observation of the nurse consultants undertaking clinical care and is described further in the analysis of the role.
Background: The transition from child to adult services is a crucial time in the health of young people who may potentially fall into a poorly managed 'care gap'. Health service provision, which fails to meet the needs of young people and families at this time of significant change, may result in deterioration in health or disengagement with services, which can have negative long-term consequences. Developing transitional care packages has become a focus of activity in the United Kingdom and elsewhere. Indeed policy documents have been trying to guide practice for many years, with some variable success. There is much work still to be done, particularly around how guidance and the sharing of best practice, when combined can result in a change practice. Objective: This study aimed to explore the views of professionals involved in transitional care, the process of transition in their services, the barriers and facilitators to transition. Methods: This was a qualitative study using focus group methodology. Four focus groups were carried out, attended by 36 health professionals across child and adult services. They had expertise in working with young people with various health conditions and disabilities. Transcripts were analysed using qualitative content analysis. Results: Eight key factors that impact on transition emerged from the data. These included factors associated with the patient group (such as age, health condition, having complex needs) as well as factors associated with services (such as the availability of equivalent services within adult care and the links between child and adult team). Conclusion: It is imperative that health professionals consider the population they are working with when planning transitional care and take into account the factors which can lead to delayed transition so that this can be avoided if possible. Numerous examples of initiatives to facilitate more timely transition were shared: these have been reflected in our ?Benchmarks for Transition from Child to Adult Health Services?. We offer these benchmarks to inform and guide the practice of others, and illustrate their potential for use in the context of the findings shared here.
Taylor RM, Mohain J, Gibson F, Solanki A, Whelan J, Fern LA (2015) Novel participatory methods of involving patients in research: naming and branding a longitudinal cohort study, BRIGHTLIGHT., BMC Med Res Methodol 15 pp. 20-20 BioMed Central
BACKGROUND: Patient and public involvement (PPI) is central to research and service planning. Identifying effective, meaningful ways of involvement is challenging. The cohort study 'Do specialist services for teenagers and young adults with cancer add value?' follows young people for three years, examining outcomes associated with specialist care. Participant retention in longitudinal research can be problematic potentially jeopardising study completion. Maximising study awareness through high impact branding and publicity may improve study retention. Study names are typically generated by researchers rather than designed with patients. We aimed to involve young people in developing a brand identity and name to 'Do specialist services for teenagers and young adults with cancer add value?'. METHODS: Nine young people aged 17-26 years diagnosed with cancer when aged 14-25 years participated in a one day workshop with further data collection at a patient conference. Methodology was similar to conventional branding and naming exercises and was divided into six stages. The workshop comprised five stages. Stage 1: 'What's in a brand' allowed young people to enquire why brands/logos are important, Stage 2: 'Brand Transformation' identified what young people needed to know and believe about the study when approached about participation, Stage 3: 'Brand Essence' determined how we wanted the study to be perceived by young people, Stage 4: 'What's in a name' identified potential names for the study. Stage 5: 'Logo creation' assembled the mood and feel of logos. Stage 6 was logo design and an electronic survey of 249 young people attending a patient conference. RESULTS: BRIGHTLIGHT was the final study name and the brand essence (or study personality) was friendly, supportive and inspiring. Four logos were designed and the final logo received 47% (n = 115) of votes. CONCLUSIONS: Acceptance and retention to BRIGHTLIGHT is higher than anticipated (80% versus 60%), this may be related to our integral PPI strategy. We propose this reproducible methodology as an important, enjoyable, and novel way of involving patients in research and a welcome alternative to researcher-developed acronyms. Ideally this should be carried out prior to engaging with healthcare professionals to prevent confusion around study identity.
Oulton K, Gibson F, Sell D, Williams A, Pratt L, Wray J (2016) Assent for children's participation in research: why it matters and making it meaningful., Child: Care, Health and Development 42 (4) pp. 588-597
BACKGROUND: There are gaps in the existing evidence base about assent, with conflicting and unhelpful views prevalent. We contend that appropriate assent is a valuable process that has important consequences for children's/young people's participation in research. Furthermore, there is a need for a model to support researchers in making decisions about who to assent and how to do this is a meaningful way. METHODS: We undertook a scoping review of the literature to assess the body of opinion on assent in research with children/young people. An anonymous online survey was conducted to gather views from the wider community undertaking research with children/young people. We also sought to gather examples of current and effective practice that could be shared beyond the level of a single institution and our own experience. Survey participants included 48 health professionals with varied levels of experience, all actively involved in research with children. RESULTS: Published work, the findings from the online survey and our knowledge as experienced researchers in the field have confirmed four domains that should be considered in order for assent to be meaningful and individualized: child-related factors, family dynamics, study design and complexity and researcher and organizational factors. Mapping these domains onto the three paradigm cases for decision-making around children and young people's assent/consent as recommended by the Nuffield Council on Bioethics has resulted in a model that will aid researchers in understanding the relationship between assent and consent and help them make decisions about when assent is appropriate. CONCLUSIONS: The debate about assent needs to move away from terminology, definition and legal issues. It should focus instead on practical ways of supporting researchers to work in partnership with children, thus ensuring a more informed, voluntary and more robust and longer lasting commitment to research.
Gibson F, Shipway L, Barry A, Taylor RM (2012) What's it like when you find eating difficult: children's and parents' experiences of food intake., Cancer Nurs 35 (4) pp. 265-277
BACKGROUND: Despite significant advances in supportive care, children and families continue to face many challenges managing the consequences of cancer therapies. The purpose of this study was to explore the eating experiences of children, both at home and in hospital. OBJECTIVE: The objective of the study was to explore the perceptions and experiences of children and their families regarding food intake and discover how nutritional issues are managed by children and families. METHODS: A stratified sample was recruited according to stage in treatment journey, risk of developing nutritional problems, and aged 4 to 12 years undergoing chemotherapy at a cancer center in London, was recruited. This qualitative study involved the use of 2 key visual storytelling techniques: (1) photographs and drawings contained in a scrapbook or diary used as interview stimuli and (2) in-depth interviews with parents. RESULTS: Our study revealed a complex interplay between the context of care, added to an individual child's desires and nutritional needs that are constantly changing during therapy. Failures in the hospital system to meet the nutritional needs of children placed extra stress on parents to provide food for their children. CONCLUSIONS: A relaxed and creative approach to tempting and keeping children engaged with food and eating was a focus for parents, which avoided what they described as making a "big deal about it." Poor information meant that children and parents were not always prepared for the adverse effects of therapies. IMPLICATIONS FOR PRACTICE: This study contributes much to the emerging description of practice guidance and informs strategies that can be used by children and parents.
Taylor RM, Fern LA, Solanki A, Hooker L, Carluccio A, Pye J, Jeans D, Frere-Smith T, Gibson F, Barber J, Raine R, Stark D, Feltbower R, Pearce S, Whelan JS (2015) Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer., Health Qual Life Outcomes 13 pp. 107-107 BioMed Central
BACKGROUND: Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end-points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13-24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention. METHODS: A three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14-25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14-24 years. RESULT: Stage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people's cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments. CONCLUSION: Collaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young people but also examines patient experience and outcomes associated with specialist cancer care. Engagement of young people throughout the survey development has ensured the content appropriately reflects their experience and is easily understood. The BRIGHTLIGHT survey was developed for a specific research project but has the potential to be used as a TYA cancer survey to assess patient experience and the care they receive.
Tomlinson D, Gibson F, Treister N, Baggott C, Judd P, Hendershot E, Maloney AM, Doyle J, Feldman B, Sung L (2009) Understandability, content validity and overall acceptability of the children's international mucositis evaluation scale (chimes): child and parent reporting., Journal of Pediatric Hematology and Oncology 31 (6) pp. 416-423 Lippincott Williams & Wilkins
Mucositis assessment in children has primarily relied on assessment tools that have been developed for an adult population. A mucositis assessment scale for use in children has previously been developed from expert opinion, namely Children's International Mucositis Evaluation Scale (ChIMES). After the development of ChIMES, we aimed to evaluate the user perspective of the scale by testing the understandability, content validity, and overall acceptability of ChIMES working with parents, children, and teenagers as content experts. Overall acceptability of the scale was satisfactory; however, comments provided by the participants questioned several aspects of the initial version of ChIMES. After discussion of the results, a refined version of ChIMES was produced that accounts for the views of the target population
To systematically identify and analyse published research exploring teenage and young adult experience of cancer to inform the development of a patient-reported outcome survey intended to explore if a correlation exists between specialist cancer care and quality of life for young people with cancer.
Systematic review and meta-synthesis.
Medline, CINAHL Plus and PsycInfo were searched for literature published between 1987 and 2011.
Search terms included those for: population (e.g. teen, young adult); intervention (e.g. cancer); outcome (e.g. experience); and study type (e.g. qualitative). Inclusion criteria: adolescents and young adults were both represented; diagnosis of cancer; published in English; and used qualitative methods to report an aspect of the cancer experience. Studies were excluded if they were reporting: palliative care experience; secondary data; or proxy views, i.e. parent or health professional perspective. Methodological quality was assessed using Cesario criteria and meta-synthesis involved deconstruction and decontextualising findings to identify common themes.
Three hundred and fifteen studies were identified, 17 fulfilled the inclusion criteria. Of these, most (59%), were assessed as being high quality, none were rated poor. Nine common themes were identified: psychosocial function, importance of peers, experience of healthcare, importance of support, impact of symptoms, striving for normality, impact of diagnosis, positive experiences, and financial consequences.
The conceptual model developed from the meta-synthesis depicts the mediators and consequences of cancer care that impact on young people's quality of life after a cancer diagnosis. The model highlights areas that require further exploration.
Gibson F, Bamford O (2001) Focus group interviews to examine the role and development of the clinical nurse specialist., J Nurs Manag 9 (6) pp. 331-342
This paper reports on the use of focus groups to investigate the development of clinical nurse specialist roles. The need for this project was identified during initial research, undertaken in two London Hospital Trusts, to assess the variety and nature of advanced clinical nursing roles already in evidence. From analysis of these data, this second stage of the research developed, in which the future of the clinical nurse specialist role within these two trust settings was explored. The initial steps of grounded theory, analytical techniques and procedures, using a constant comparative method, were used to analyse the findings from five focus groups (composed of a total of 25 nurses from two trusts). From the data, six categories were identified; role components; experience versus education; supportive strategies; personal qualities; future role development and development strategies. These categories provide the framework for discussing the findings of the research, within the context of the available literature. This examination of the clinical nurse specialist role highlights issues for career progression and education strategies. Both will need careful planning, in order for the clinical nurse specialist role to be considered and evolve as part of a potential strategy for the development of nursing roles within the two trusts and on a national level.
Heirs M, Suekarran S, Slack R, Light K, Gibson F, Glaser A, Hawkins M, Phillips R (2012) A systematic review of models of care for the follow up of childhood cancer survivors, Pediatric Blood and Cancer 60 (3) pp. 351-356 Wiley
Follow-up care for survivors of childhood cancer is increasingly seen as a priority service as numbers of survivors increase. Despite this there are few published evaluations of the available options. We conducted a systematic review of published and unpublished literature. Seven uncontrolled studies, and one comparative study of a related intervention, were identified. Observational data suggest that follow-up care was useful even for patients who did not perceive this as a need. Suitably powered, well-conducted, controlled trials of adequate duration that directly compare follow-up models are required to provide robust evidence on the optimal care for these patients. Pediatr Blood Cancer 2013; 60: 351?356.
Aldiss S, Taylor RM, Soanes L, Maguire R, Sage M, Kearney N, Gibson F (2011) Working in collaboration with young people and health professionals. a staged approach to the implementation of a randomised controlled trial, Journal of Research in Nursing 16 (6) pp. 561-576
ASyMS© is an Advanced Symptom Management System utilising mobile phone technology to monitor chemotherapy-related symptoms and promote self-care. It was first developed with an adult cancer population and is now being evaluated with young people through an iterative development process. ASyMS© involves patients recording and sending symptom reports to the hospital and receiving tailored self-care advice. Health professionals are alerted when severe symptoms are reported. Three phases of the ASyMS©-YG (young people) study are complete. Phase 1 involved young people identifying the symptoms to be assessed. Phase 2 involved young people testing the symptom report system, and ascertaining young people's, parents' and professionals' perceptions of ASyMS©-YG. This paper reports on Phase 3, in which the system was developed further in preparation for a randomised controlled trial (RCT). Health professionals devised an alert system based on risk modelling side-effect severity, and young people and professionals developed self-care advice. A pilot study was conducted to test the alert system and study design in readiness for a definitive RCT. The contribution young people and professionals have made to this project is invaluable in evaluating the practical effectiveness of ASyMS©-YG and ensuring the intervention is acceptable and works in everyday practice. © The Author(s) 2010.
Aldiss S, Baggott C, Gibson F, Mobbs S, Taylor RM (2015) A critical review of the use of technology to provide psychosocial support for children and young people with long-term conditions., J Pediatr Nurs 30 (1) pp. 87-101
Advances in technology have offered health professionals alternative mediums of providing support to patients with long-term conditions. This critical review evaluated and assessed the benefit of electronic media technologies in supporting children and young people with long-term conditions. Of 664 references identified, 40 met the inclusion criteria. Supportive technology tended to increase disease-related knowledge and improve aspects of psychosocial function. Supportive technology did not improve quality of life, reduce health service use or decrease school absences. The poor methodological quality of current evidence and lack of involvement of users in product development contribute to the uncertainty that supportive technology is beneficial.
Hannan J, Gibson F (2005) Advanced cancer in children: how parents decide on final place of care for their dying child., Int J Palliat Nurs 11 (6) pp. 284-291
AIM: to explore retrospectively the decisions made by parents regarding their choice of place of care at time of death for their child with advanced cancer. DESIGN: cross-sectional descriptive study. ANALYSIS: interpretive phenomenological analysis. SAMPLE: parents of five children who had died of advanced cancer, whose care was overseen by the participating paediatric oncology centre in the southeast of England. Three children died at home and two in hospital. RESULTS: seven themes were identified, four of which will be discussed: valuing time left; needing to feel safe and secure; we didn't know what to expect; and the difference between specialist and non-specialist staff. Families' decisions were instinctive or intuitive rather than a calculated weighing up of options. Families identified aspects of care that were both valuable and could be improved. CONCLUSION: parents value the time that their children have to live when they know that their child's disease is incurable. Decisions around place of care are just that, decisions around place of care not place of death. Families valued the same types of support from staff regardless of the setting in which care was provided and found the same deficiencies difficult.
Coad J, Gibson F, Horstman M, Milnes L, Randall D, Carter B (2015) Be my guest! Challenges and practical solutions of undertaking interviews with children in the home setting., J Child Health Care 19 (4) pp. 432-443 Sage
This article aims to share critical debate on undertaking interviews with children in the home setting and draws on the authors' extensive research fieldwork. The article focuses on three key processes: planning entry to the child's home, conducting the interviews and exiting the field. In planning entry, we include children's engagement and issues of researcher gender. In conducting the interviews, we consider issues such as the balance of power, the importance of building a rapport, the voluntary nature of consent and the need for a flexible interview structure. Finally, we address exiting from the child's home with sensitivity at the end of the interview and/or research study. Undertaking research in the child's home provides a known and familiar territory for the child, but it means that the researcher faces a number of challenges that require solutions whilst they are a guest in a child's home.
Tomlinson D, Gibson F, Treister N, Baggott C, Judd P, Hendershot E, Maloney AM, Doyle J, Feldman B, Kwong K, Sung L (2010) Refinement of the Children's International Mucositis Evaluation Scale (ChIMES): child and parent perspectives on understandability, content validity and acceptability, European Journal of Oncology Nursing (EJON) 14 (1) pp. 29-41 Elsevier
A new paediatric mucositis assessment instrument, the Children's International Mucositis Evaluation Scale (ChIMES), has required several phases of development. A draft of ChIMES was developed that required further refinement. This paper describes two iterations of refinements of ChIMES using child and parent reporting of understandability, content validity and overall acceptability.
Parents, children and teenagers were asked to rate their opinion of understandability and overall acceptability of ChIMES on a five-point ordinal scale. Content validity was assessed by whether participants considered the instrument ?good?, ?okay? or ?bad?. Descriptive analysis of the results was conducted.
One hundred and twenty-two participants evaluated two iterations. On the initial evaluation, ChIMES was considered easy to understand, acceptable and have content validity. However, minor amendments were required and a further iteration of testing was necessary to achieve a satisfactory instrument. A final version of ChIMES was developed.
Modification of each draft of ChIMES was performed until comments were minimal and the scores from participants were consistently high. A final instrument appeared to contain the correct content and was easy to understand by parents, older children and teenagers.
Coyne I, Amory A, Gibson F, Kiernan G (2016) Information-sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange., Eur J Cancer Care (Engl) 25 (1) pp. 141-156 Wiley
This study examined participants' views on children's participation in information-sharing and communication interactions. A descriptive qualitative approach was taken with individual interviews held with children (The term 'children' is used to denote both children and adolescents and to avoid cumbersome repetition.) aged 7-16 years (n = 20), their parents (n = 22) and healthcare professionals (n = 40) at a children's hospital in Ireland. Data were analysed using the constant comparative method and managed with NVivo (version 8). The findings indicate that professionals strongly supported an open and honest approach to information-sharing; however, this viewpoint was not shared by all parents. The need to maintain hope and spirit and promote an optimistic identity influenced the amount and type of information shared by parents. Children trusted their parents to share information, and valued their parents' role as interpreters of information, advocates, and communication buffers. Most professionals endorsed parents' primacy as managers of information but experienced difficulty navigating a restricted stance. This study adds important insights into the complexities of information-sharing in triadic encounters. Professionals need to maintain an open mind about information-sharing strategies families may choose, remain sensitive to parents and children's information requirements and adopt a flexible approach to information provision.
Vindrola-Padros C, Taylor RM, Lea S, Hooker L, Pearce S, Whelan J, Gibson F (2015) Mapping Adolescent Cancer Services: How Do Young People, Their Families, and Staff Describe Specialized Cancer Care in England?, Cancer Nurs Lippincott, Williams & Wilkins
BACKGROUND: Specialized cancer services for adolescents and young adults (AYAs) are being developed in a number of countries to address the particular needs of this population. However, the evidence base to inform service design and associated care delivery is inadequate. OBJECTIVE: The aim of this study was to undertake a mapping study to identify the main components of AYA cancer care to be studied further to reflect the range of approaches to service delivery currently provided in England. METHODS: Semistructured interviews were conducted with young people, their family members, and staff in 11 AYA principal treatment centers. Using different levels of extraction, these data were drawn together to illuminate the main components of AYA cancer care and the range of approaches to service delivery. RESULTS: Young people, family members, and staff consistently identified and valued similar areas of AYA cancer care: caring and supportive staff, activities designed for AYAs, and an environment that feels like home. CONCLUSION: The mapping exercise successfully informed the selection of 4 sites for an in-depth case study. The main components of specialized AYA care have been described. IMPLICATIONS FOR PRACTICE: This description can assist clinical teams interested in developing or refining their approach to AYA cancer care. It could also offer a way to agree priorities, based on the key components young people consider as being essential for their care, and facilitate services to benchmark against these key components, and it could also go some way to address international AYA goals to support global change to reduce the current disparities in care.
Gibson F (2014) What is it really like to be a young person, in our hospital, at this moment?, Cancer Nurs 37 (2) pp. 86-87
The reasons why teenagers and young adults (TYA) with cancer do, or do not, participate in clinical trials is not wholly understood. We explored the perceptions and experiences of young people with bone cancer, and health professionals involved in their care, with regard to participation in two clinical trials. We conducted semi-structured interviews using narrative inquiry with 21 young people aged 15-24 years and 18 health professionals. New understandings emerged about perceptions of, and factors that influence participation in, clinical trials. These include perceptions about the importance and design of the clinical trial, communicating with young people in an age-specific manner, using language young people are comfortable with, support from family, peers and specialists in teenage and young adult cancer care. We conclude that addressing these factors may increase acceptability of clinical trials and the trial design for TYA with cancer and ultimately improve their participation. Qualitative research has an important role in making explicit the perceptions and practices that ensure trials are patient-centred, appropriate and communicated effectively to TYA. Translating knowledge gained into routine practice, will go some way in ensuring that the disparities affecting this population are more fully understood.
Gibson F, Chisholm J, Blandford E, Donachie P, Hartley J, Lane S, Selwood K, Skinner R, Phillips R (2013) Developing a national 'low risk' febrile neutropenia framework for use in children and young people's cancer care, SUPPORTIVE CARE IN CANCER 21 (5) pp. 1241-1251 SPRINGER
Horstman M, Aldiss S, Richardson A, Gibson F (2008) Methodological issues when using the draw and write technique with children aged 6 to 12 years., Qual Health Res 18 (7) pp. 1001-1011
Researchers are responsible for using techniques that allow children to contribute their perspectives in a way that is most suited to their strengths and preferences. The draw and write technique is a method that needs to be used carefully and sensitively if children are to become active participants in revealing their world as they see it. In this article, we explore the issues for the child and researcher of using the draw and write technique as a participatory research methodology. Reflections on the technique are drawn from our experience of using it with children aged 6 to 12 years. This was part of a larger study undertaken to enable children aged 4 to 18 years with a diagnosis of cancer to give their views about hospital care. The participating children's verbal and artistic contributions illustrate how children are able to convey their opinions when there is an enabling climate created.
Taylor RM, Franck LS, Dhawan A, Gibson F (2010) The stories of young people living with a liver transplant., Qual Health Res 20 (8) pp. 1076-1090
Adolescence is a difficult time for those with chronic illness because of the constraints of the illness on developmental tasks. Little is known about the impact liver transplantation has during adolescence. In this study we aimed to explore, in their own words, young people's lived experience of life after transplantation. We used semistructured interviews to collect narrative data, and used a purposive sample of 14 young people in early, middle, and late adolescence, transplanted for a range of chronic, acute, and metabolic liver diseases. We analyzed the transcripts using a framework in which analysis progresses through a five-stage process of matrices. Six main themes emerged, related to relationships, affect on schooling, tiredness and fatigue, acceptance of the burden of medication, communication with health professionals, and view of the future. These findings add new insight into the transplantation experience, which might lead to improvements in care and help direct further research in this important aspect of clinical care.
Introduction Long-term morbidity associated with survival from childhood cancer is well defined. Traditional models of hospital-based long-term aftercare are not sustainable and may not be necessary for all. A programme to support development and implementation of redesigned care pathways is reported.
Method Application of service improvement methodologies to identify the case for change, to evidence development of, and test, new aftercare pathways.
Results Four models of aftercare were identified; traditional cancer centre-delivered medical follow-up, shared care with local hospitals or primary care, specialist nurse-led supported management and self-management. Key components required for successful implementation of risk-stratified care included; comprehensive information transfer with treatment summaries and care plans, provision of care coordinators, effective transition across services, remote monitoring systems, educating professionals, maintaining patient choice.
Conclusions Adoption of risk-stratified evidence-based aftercare pathways, generated through application of service improvement methodologies, can result in the delivery of enhanced quality and productivity.
Khair K, Meerabeau L, Gibson F (2015) Self-management and skills acquisition in boys with haemophilia., Health Expect 18 (5) pp. 1105-1113
BACKGROUND: There is an increasing prevalence of children/young people with long-term conditions (LTC) in the UK due to improvements in health-care management and delivery. These children are often involved, from an early age, in their own care and management; yet, there are little data to support how or when they develop the necessary skills and knowledge to become competent at this care. OBJECTIVE: This study aimed to understand self-management of haemophilia, from a child's perspective, in the 21st century in the UK where intensive prophylactic therapy is given from early childhood. DESIGN: A qualitative study using grounded theory to evaluate life-experiences of children and young people with haemophilia. SETTING AND PARTICIPANTS: Thirty boys aged 4-16 with severe haemophilia treated at a single paediatric haemophilia care centre were interviewed at home or in a focus group. INTERVENTION/VARIABLES: Multimethod qualitative research including age-appropriate research tools (draw and write, photo-elicitation and interviews) to facilitate data collection from children. RESULTS: Boys develop self-management skills over time. They learn from health-care professionals, their parents and other family members with haemophilia. DISCUSSION: Self-management skills (bleed recognition, self-infusion, self and medicines management, pain and risk management and conceptualizing preventative therapy) are developed through experiential learning and individualized education, and not through formalized expert patient programmes. CONCLUSION: The boys in this study have benefited from early prophylactic factor replacement therapy. They develop skills in haemophilia and self-management at a relatively young age and are experts in their own haemophilia care.
Gibson F, Fern L, Whelan J, Pearce S, Lewis IJ, Hobin D, Taylor RM (2012) A scoping exercise of favourable characteristics of professionals working in teenage and young adult cancer care: 'thinking outside of the box'., Eur J Cancer Care (Engl) 21 (3) pp. 330-339 Wiley
A scoping exercise to define the preferred competencies of professionals involved in teenage and young adult (TYA) cancer care. Data were generated during two workshops with health professionals. In groups, they ranked skills, knowledge and attitudes, previously identified through a literature search, onto a diamond template. Data were also used from an education day with TYA professionals, who generated lists of key skills, knowledge and attitudes. Individually, professionals then selected the top five areas of competence to care for young people with cancer. The workshops generated three diamonds, which exhibited agreement of 13 principle skills, knowledge and attitudes. The top two being: 'expertise in treating paediatric and adult cancers' and 'understanding cancer'. The data from the education day suggested communication, technical knowledge and teamwork as being core role features for professionals who care for young people with cancer. Integration of both datasets; one derived inductively, the other deductively provides a comprehensive outline of core skills health professionals require to be proficient in young people's cancer care. These results will form the basis of future discussion around workforce strategies and inform a Delphi survey.
Knighting K, Rowa-Dewar N, Malcolm C, Kearney N, Gibson F (2011) Children's understanding of cancer and views on health-related behaviour: a 'draw and write' study, CHILD CARE HEALTH AND DEVELOPMENT 37 (2) pp. 289-299 WILEY-BLACKWELL
Vindrola-Padros C, Martins A, Coyne I, Bryan G, Gibson F (2016) From informed consent to dissemination: Using participatory visual methods with young people with long-term conditions at different stages of research., Glob Public Health 11 (5-6) pp. 636-650 Taylor & Francis
Research with young people suffering from a long-term illness has more recently incorporated the use of visual methods to foster engagement of research participants from a wide age range, capture the longitudinal and complex factors involved in young people's experiences of care, and allow young people to express their views in multiple ways. Despite its contributions, these methods are not always easy to implement and there is a possibility that they might not generate the results or engagement initially anticipated by researchers. We hope to expand on the emerging discussion on the use of participatory visual methods by presenting the practical issues we have faced while using this methodology during different stages of research: informed assent/consent, data collection, and the dissemination of findings. We propose a combination of techniques to make sure that the research design is flexible enough to allow research participants to shape the research process according to their needs and interests.
Lowe R, Bravery K, Gibson F (2008) Navigating the maze: parents' views and influence on a paediatric haematology and oncology day care service., J Clin Nurs 17 (23) pp. 3159-3167
AIM: To examine with families their views on the service they receive in a Paediatric Haematology/Oncology Day Care Unit. BACKGROUND: National policy emphasises the importance of involving children, young people and families in the planning of services they are receiving. To be responsive to real, as opposed to perceived needs, health care professionals are actively seeking ways to capture the voice of the families they care for through a process of consultation and action. DESIGN: Focus groups. METHOD: A series of focus groups were undertaken with 16 families who were either on treatment or within six months of completion of treatment for acute lymphoblastic leukaemia. Tape- and note-based analysis was initially undertaken and the data sorted by means of an overview grid. Data were then analysed by the research team through comparison and agreement of final themes. RESULTS: The majority of families were satisfied with the care they received. Six themes are described that capture their combined thoughts on their overall experience; navigating the maze, communication, continuity of care, environment, waiting and organisation of care. CONCLUSIONS: Focus groups are an effective means of obtaining data from service users. Group discussion allowed for the sharing and development of ideas to be incorporated into developments within the service. RELEVANCE TO CLINICAL PRACTICE: Increasingly, children, young people and their families are being cared for within Paediatric Haematology/Oncology Day Care units, it is, therefore, vital that this aspect of care is designed, co-ordinated and delivered around the needs of the family. This can only be achieved by listening to the stories of those families who use our service to confirm what it is that works well and what areas of care may need to be enhanced.
Casey A, Gibson F, Hooker L (2001) Role development in children's nursing: dimensions, terminology and practice framework., Paediatr Nurs 13 (2) pp. 36-40
The transition from child to adult services is a crucial time in the health of young people who may potentially fall into a poorly managed 'care gap'. A multi-site, multi-staged study was undertaken to identify the key aspects of a transitional programme of care for young people. Through a process of mapping, which involved drawing on primary and secondary data, a clinical practice-benchmark tool was developed. Benchmarks are a health care quality performance measurement 'tool'. They provide clinical teams with standards that services can measure themselves against to see how they are doing. They are used in a comparing and sharing activity, using a structured and systematic approach, to share best practice. They offer a mechanism to look at processes, and provide an opportunity to analyse skills and attitudes, which may be the hidden narrative in benchmarking. This paper describes steps in the development of benchmarks for transition to adult care, often associated with low patient and family satisfaction. Qualitative data were collected through focus groups, workshops and interviews from 13 young people with long-term health conditions, 11 parents, 36 professionals and 21 experts leading on transition within the United Kingdom. Transcripts were analysed using qualitative content analysis. For young people and their parents/carers to experience timely and effective transition, eight factors and their associated indicators of best practice were developed from the primary and secondary data and refined through an iterative process. We recommend their use to clinical teams to inform system level strategies as well as evaluation programmes.
Gibson F, Pearce S, Eden T, Glaser A, Hooker L, Whelan J, Kelly D (2013) Young people describe their prediagnosis cancer experience., Psychooncology 22 (11) pp. 2585-2592 Wiley
OBJECTIVE: Young people often report a protracted journey to diagnosis and frequently report perceived delays. This study was undertaken to increase understanding of the self-reported prediagnosis experiences in young people with a non-haematological cancer, as close as possible to the time of diagnosis. METHODS: Narrative interviews were conducted with 24 young people aged 16-24, 2-4 months from the diagnosis of a solid tumour. Data were analysed to identify whether prediagnosis narratives could be classified according to shared characteristics (typologies) to identify broader contextual issues concerning cancer, and cancer risk perceptions, in this age group. Case notes were also accessed to contextualize and confirm accounts. RESULTS: The main themes, which included a group narrative concerning perspectives of delay, included the impact on an individual's everyday life by symptoms; the role that significant others in young peoples' lives played in the interpretation of symptom significance; the negotiation of entry into, and experiences of, generalist health care; entry into specialist care; and the threshold points that exemplified when events shifted and a diagnosis was eventually obtained. CONCLUSIONS: The narratives reveal complex, and multidimensional explanations for delay with individual and contextual factors contributing. Insights were gained into preventable diagnostic delay; including investigations having been instigated, but not followed up. Each narrative also offered significant insights into how cancer symptoms should be considered within the context of young peoples' lives. This would help prevent signs and symptoms in this age group failing to trigger suspicion and not being treated seriously.
Bate J, Gibson F, Johnson E, Selwood K, Skinner R, Chisholm J (2013) Neutropenic sepsis: prevention and management of neutropenic sepsis in cancer patients (NICE Clinical Guideline CG151), ARCHIVES OF DISEASE IN CHILDHOOD-EDUCATION AND PRACTICE EDITION 98 (2) pp. 73-75 BMJ PUBLISHING GROUP
Kumpunen S, Shipway L, Taylor RM, Aldiss S, Gibson F (2012) Practical approaches to seeking assent from children., Nurse Res 19 (2) pp. 23-27 RCN Publishing
AIM: To describe and evaluate two approaches--a storyboard and a wordsearch--that the authors used with children aged four to 12 years to obtain assent. BACKGROUND: The assent process is vital in helping children to understand the elements of a research project and to make a choice of whether or not to participate. However, the methods for obtaining assent are not well documented. DATA SOURCES: Two researchers' thematic reviews of the primary researcher's field notes, taken during a study of eating problems during chemotherapy. DISCUSSION: The assent process appeared to be an enjoyable, positive experience for many children. They appeared to understand what participation entailed--that it was voluntary and that they had a choice. CONCLUSION: When using child-centred techniques, children are aware of what being in a research study will mean to them. IMPLICATIONS FOR PRACTICE: Researchers can be confident in gaining assent from children as young as five years.
Gibson F, Vindrola-Padros C, Hinds P, Nolbris MJ, Kelly D, Kelly P, Ruccione K, Soanes L, Woodgate RL, Baggott C (2015) Building the Evidence for Nursing Practice: Learning From a Structured Review of SIOP Abstracts, 2003-2012, PEDIATRIC BLOOD & CANCER 62 (12) pp. 2172-2176 WILEY-BLACKWELL
Khair K, Gibson F, Meerabeau L (2012) The benefits of prophylaxis: views of adolescents with severe haemophilia., Haemophilia 18 (3) pp. e286-e289
It is well known and often reported that patients with long-term health conditions have problems adhering to treatment regimens. This is often reportedly worst in adolescents who struggle with the physical and psychological impact of adolescence as well as with the limitations that treatment regimens impose on their day-to-day activities. This article presents results from a larger study that aimed to discover what living with haemophilia in the 21st century was like for boys with severe haemophilia. The overall study was a multi-method, cross-sectional interview based study of 30 boys with severe haemophilia, treated with prophylaxis at a single site in the UK. Although not specifically asked in the interview schedule, opinions about treatment (prophylaxis) were given by 66% of the boys. These boys recognized that prophylaxis offered them protection from bleeding, the older and more sporty boys understood the need for tailored prophylaxis around 'risk' activities such as sport or events away from home. For some boys this meant low dose daily prophylaxis, and this further enhanced treatment adherence, as it became firmly embedded in their daily ritual of health care. This study shows that adolescent boys are in fact adherent with treatment, possibly at a schedule decided upon by them rather than one directed by the haemophilia centre. They are able to comprehend complex treatment decisions and make treatment plans that offer them maximum protection with minimal interference in their day-to-day activities.
Selwood K, Ward E, Gibson F (2010) Assessment and management of nutritional challenges in children?s cancer care: a survey of current practice in the United Kingdom, European Journal of Oncology Nursing (EJON) 14 (5) pp. 439-446 Elsevier
The maintenance of an adequate nutritional intake is vital for the child or young person undergoing treatment for cancer. Inability to maintain nutrition can lead to poor tolerance of treatment, increased risk of infectious complications and a potential poorer overall outcome. Good nutritional support is vital however there does not appear to be a national or consistent approach to either nutritional support or assessment.
The Paediatric Oncology Nurses Forum of the Royal College of Nursing and the Paediatric Oncology Dieticians Interest Group surveyed practice in the 21 Childrens Cancer and Leukaemia Group Centres in the United Kingdom and Ireland with the express aim of reviewing current practice as a first stage towards developing national guidance for nutritional management.
Methods and sample
Questionnaires designed to review nutritional assessment and nutritional interventions were distributed to both a nurse and dietician in each CCLG centre. The results were analysed using descriptive statistics.
There was a 100% return rate from nurses and 66% from dieticians. The results showed an inconsistent approach in both assessment methods and approaches to nutritional intervention for this group of patients.
It is recognised that there is a need to adequately assess and provide appropriate nutrition for children and young people receiving cancer therapies. This survey highlights the inconsistencies in practice today as well as the need for consistent and useful guidance especially in the area of nutritional assessment and management of potential malnutrition.
Twycross A, Parker R, Williams A, Gibson F (2015) Cancer-Related Pain and Pain Management: Sources, Prevalence, and the Experiences of Children and Parents., J Pediatr Oncol Nurs 32 (6) pp. 369-384 Sage
Advances in treatment mean children are increasingly cared for by their parents at home, leading to a shift in responsibility from health care professionals to parents. Little is known about parents' pain management experiences and the etiology of pain experienced by children with cancer especially when at home. A rapid review of the literature was undertaken investigating children's cancer-related pain, with emphasis on the management of pain outside the health care setting. Electronic databases were searched and a quality assessment was conducted. Forty-two articles were included. Despite advances in pain management techniques, children with cancer regularly cite pain as the most prevalent symptom throughout the cancer trajectory. The source of pain is usually treatment side effects or painful procedures. Parents find dealing with their child's pain distressing and demanding and may hold misconceptions about pain management. Findings indicate a need for more robust research into parental pain management leading to the development of effective pain management resources for parents.
OBJECTIVE: Young people with cancer exhibit unique needs. During a time of normal physical and psychological change, multiple disease and treatment-related symptoms cause short and long-term physical and psychosocial effects. Little is known about how young people cope with the impact of cancer and its treatment on daily routines and their strategies to manage the challenges of cancer and treatments. We aimed to determine how young people describe these challenges through a social media site. METHODS: Using the principles of virtual ethnography and watching videos on a social media site we gathered data from young people describing their cancer experience. Qualitative content analysis was employed to analyse and interpret the narrative from longitudinal 'video diaries' by 18 young people equating to 156 films and 27 h and 49 min of recording. Themes were described then organized and clustered into typologies grouping commonalities across themes. RESULTS: Four typologies emerged reflective of the cancer trajectory: treatment and relenting side effects, rehabilitation and getting on with life, relapse, facing more treatment and coming to terms with dying. CONCLUSIONS: This study confirms the need for young people to strive towards normality and creating a new normal, even where uncertainty prevailed. Strategies young people used to gain mastery over their illness and the types of stories they choose to tell provide the focus of the main narrative. Social Media sites can be examined as a source of data, to supplement or instead of more traditional routes of data collection known to be practically challenging with this population. Copyright © 2016 John Wiley & Sons, Ltd.
Neilson SJ, Gibson F, Greenfield SM (2015) Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents., J Palliat Care Med 5 (2) pp. 214-214 OMICS International
OBJECTIVE: This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents. METHODS: One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis. RESULTS: Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support. CONCLUSIONS: Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members.
PURPOSE OF THE RESEARCH: Despite decision-making featuring throughout the trajectory of cancer care, children's participation in decision-making remains an area much under-researched and complicated by conflicting opinions. This study explored children's participation in shared decision-making (SDM) from multiple perspectives from one haematology/oncology unit in Ireland. METHODS AND SAMPLE: Qualitative research design was used to explore participants' experiences of children's decision-making. Interviews were conducted with children(1) aged 7-16 years (n = 20), their parents (n = 22) and healthcare professionals (n = 40). Data were managed with the aid of NVivo (version 8). KEY RESULTS: Parents and children's roles in decision-making were significantly influenced by the seriousness of the illness. Cancer is a life-threatening illness and so the treatment 'had to be done'. Children were not involved in major decisions (treatment decisions) as refusal was not an option. They were generally involved in minor decisions (choices about care delivery) with the purpose of gaining their cooperation, making treatment more palatable, giving back a sense of control and building trusting relationships. These choices were termed 'small' decisions that would not compromise the child's welfare. Some adolescents were aware that choices were not 'real' decisions since they were not allowed to refuse and expressed feelings of frustration. CONCLUSIONS: Healthcare professionals and parents controlled the process of SDM and the children's accounts revealed that they held a minimal role. Children appeared content that adults held responsibility for the major treatment decisions. However, they desired and valued receiving information, voicing their preferences and choosing how treatments were administered to them.
Malcolm C, Forbat L, Anderson G, Gibson F, Hain R (2011) Challenging symptom profiles of life-limiting conditions in children: a survey of care professionals and families, Palliative Medicine 25 (4) pp. 374-381 Sage
This paper reports on data from the initial phase of a UK-wide study exploring life-limiting conditions (LLCs) in children where, because of their rarity, little is understood regarding the significant symptom challenges of families and care professionals who support them. In this initial phase, care professionals (n = 43) and families (n = 16) completed a survey to identify which rare LLCs present symptom challenges and which individual symptoms prove difficult to manage. Findings led to the prioritization of mucopolysaccharidoses, Batten Disease and leukodystrophy. Care professionals? rationales for selecting these conditions included the presence of symptoms that are very difficult to manage, a requirement for additional clinical evidence to support symptom management, and the progressive nature of these diseases where symptoms frequently change and are difficult to predict. Families identified symptoms such as behavioural difficulties, visual impairments and communication impairments as those being most difficult to manage and having most impact on quality of life for children and families.
Taylor RM, Crichton N, Moult B, Gibson F (2015) A prospective observational study of machine translation software to overcome the challenge of including ethnic diversity in healthcare research, Nursing Open 2 (1) pp. 14-23 Wiley
Aim This study investigates whether machine translation could help with the challenge of enabling the inclusion of ethnic diversity in healthcare research. Design A two phase, prospective observational study. Methods Two machine translators, Google Translate and Babylon 9, were tested. Translation of the Strengths and Dif?culties Questionnaire (SDQ) from 24 languages into English and translation of an English information sheet into Spanish and Chinese were quality scored. Quality was assessed using the Translation Assessment Quality Tool. Results Only six of the 48 translations of the SDQ were rated as acceptable, all from Google Translate. The mean number of acceptably translated sentences was higher (P = 0?001) for Google Translate 17?1(SD 7? 2) than for Babylon 9 11 (SD7?9). Translation by Google Translate was better for Spanish and Chinese,although no score was in the acceptable range. Machine translation is not currently suf?ciently accurate without editing to provide translation of materials for use in healthcare research.
Malcolm C, Hain R, Gibson F, Adams S, Anderson G, Forbat L (2012) Challenging symptoms in children with rare life-limiting conditions (LLCs): Findings from a prospective diary and interview study with families, Acta Paediatrica 101 (9) pp. 985-992 Wiley
Aim:? The aim was to describe the nature, frequency, severity and management challenges of symptoms in children with two rare life-limiting conditions [Mucopolysaccharide (MPS) and Batten disease].Methods:? This was an embedded mixed-method study set in the UK between 2009 and 2011. Twenty-six children from 23 families took part. Seventeen children had an MPS condition [MPS III (Sanfilippo) n = 15; MPS I (Hurler) n = 1; MPS IVA (Morquio); n = 1]. Nine children had Batten disease. Prospective data relating to symptoms were collected over 8 weeks using a symptom diary, and qualitative retrospective interviews with families were conducted. Main outcome measures included frequency, severity rating and identification of most challenging symptoms to manage.Results:? The most common and severe symptoms in MPS III were agitation, repetitive behaviours, hyperactivity and disturbed sleep, and in Batten disease were agitation, joint stiffness, secretions, and disturbed sleep. The data highlighted the high prevalence of behavioural symptoms. Distress caused to families by symptoms was not related simply to their occurrence, but to difficulty in management, likelihood of control and extent to which they signalled disease progression and decline.Conclusion:? In challenging contrast to the dominant biomedical framing of these rare conditions it was behavioural symptoms, rather than the physical ones, that families documented as most frequent, severe and challenging to manage. The diary developed for this study has potential use in aiding parents and clinicians to document and communicate concerns about symptoms.
Gibson F, Cargill J, Allison J, Begent J, Cole S, Stone J, Lucas V (2006) Establishing content validity of the oral assessment guide in children and young people, EUROPEAN JOURNAL OF CANCER 42 (12) pp. 1817-1825 ELSEVIER SCI LTD
Ways of helping children with cancer to take part in decisions about their health care
Cancer is a serious illness that involves complex treatments with unpleasant side effects. Children with cancer generally prefer to be involved in some way in decisions about their care and treatment. Involving children in decisions about their health care can help their understanding of the disease and treatment, reduce their fears, help them feel more prepared and help them cope better with their cancer. The review of trials did not find any studies that helped children to participate in decision-making with parents and healthcare staff. More research is needed.
Gibson F (2005) Evidence in action: fostering growth of research-based practice in children's cancer nursing., Eur J Oncol Nurs 9 (1) pp. 8-20
It is an honour to be the first children's nurse to be asked to deliver the Robert Tiffany Lecture. However, the invite also provoked some anxiety: the responsibility weighs heavy. An opportunity to both celebrate the success of the speciality and explore the challenges that still face children's cancer nurses could not be missed. Two themes provide the focus for this paper, that of growth and evidence in action. Firstly, I will spend some time reflecting on how far we have come, describing stages of growth, development, maturation and differentiation in children's cancer nursing that defines nurses, and the speciality, as both similar and different to other nurses and other specialities. Secondly, I want to explore the notion of evidence and action and share some of the challenges we face in developing research for practice. The challenges themselves are of interest to all cancer nurses, as the solutions described have the potential for translation to other areas within cancer care. Children's cancer nursing is a relatively new speciality, and in terms of research in nursing this has only become integrated into our work in more recent years. Like many areas in nursing we continue to evolve, by anticipating and responding to changes in cancer treatments and thus influence healthcare delivery. This paper represents a point in time in the United Kingdom. Children's cancer nursing has unique qualities that attract nurses to work in the speciality, the essence of which is knowing about children and young people.
Taylor RM, Wray J, Gibson F (2010) Measuring quality of life in children and young people after transplantation: methodological considerations., Pediatr Transplant 14 (4) pp. 445-458
The measurement of QoL has become an important area for research in paediatric transplantation over the past 15 yr. While much of this work remains descriptive and exploratory, advances in treatment and the trend towards outcomes being patient centred and not just survival based suggest the measurement of QoL will be of far more importance and relevance in the future. In this discussion article, we will outline some of the issues that need to be considered when embarking on a QoL study. The aim of our account is not to be prescriptive, rather to present researchers and clinicians with questions and possible solutions to help increase the scientific robustness of future studies. We have included summary tables of instruments that are currently available as a resource for those wanting to evaluate QoL in paediatric transplantation.
Craig JV, Gibson F, Glenny AM (2010) Audit to monitor the uptake of national mouth care guidelines for children and young people being treated for cancer, Journal of Supportive Care in Cancer 19 (9) pp. 1335-1341 Springer
The aim of this study is to review current oral care practices in children being treated for cancer against audit criteria derived from national guidelines, and to compare findings with data from a baseline survey carried out in 2002 prior to implementation of the national guidelines.
A telephone survey was carried out of all 21 haematology?oncology (HO) centres and seven bone marrow transplant (BMT) units within the UK Children?s Cancer Study Group focusing on key audit themes of: availability of evidence-based guidelines, oral and dental care prior to and during cancer treatment, oral assessment, prevention and treatment of oral complications.
The national guidelines were used in 19/25 (76%) settings that employed written guidelines. There was little variation in advice given to patients/parents on basic oral hygiene, and this advice was commensurate with guideline recommendations. Inconsistencies in oral care assessment, reported at baseline, remained commonplace across the majority of settings. In only 10/21 HO centres, it was usual practice for children to undergo dental assessment prior to commencing cancer treatment, indicating no improvement since baseline survey. Few therapies outside of the guideline recommendations were being used. The routine use of preventive nystatin, not recommended in the guideline, had significantly decreased from baseline (by 40%).
Uptake of national guidelines by HO/BMT settings was good however certain oral care practices fell short of the guideline recommendations. Routine dental checks need to be embedded in practice. Further consideration is needed as to how oral assessment might be used more effectively in informing treatment.
Lehrnbecher T, Phillips R, Alexander S, Alvaro F, Carlesse F, Fisher B, Hakim H, Satolaya M, Castagnola E, Davies B, Dupuis LL, Gibson F, Groll AH, Gaur A, Gupta A, Kebudi R, Petrilli S, Steinback WJ, Villarroel M, Zaoutis T, Sung L (2012) Guideline for the management of fever and neutropenia in children with cancer and/or undergoing hematopoietic stem cell transplantation, Journal of Clinical Oncology 30 (35) pp. 4427-4438 American Society of Clinical Oncology
Purpose To develop an evidence-based guideline for the empiric management of pediatric fever and neutropenia (FN).
Methods The International Pediatric Fever and Neutropenia Guideline Panel is a multidisciplinary and multinational group composed of experts in pediatric oncology and infectious disease as well as a patient advocate. The Panel was convened for the purpose of creating this guideline. We followed previously validated procedures for creating evidence-based guidelines. Working groups focused on initial presentation, ongoing management, and empiric antifungal therapy. Each working group developed key clinical questions, conducted systematic reviews of the published literature, and compiled evidence summaries. The Grades of Recommendation Assessment, Development, and Evaluation approach was used to generate summaries, and evidence was classified as high, moderate, low, or very low based on methodologic considerations.
Results Recommendations were made related to initial presentation (risk stratification, initial evaluation, and treatment), ongoing management (modification and cessation of empiric antibiotics), and empiric antifungal treatment (risk stratification, evaluation, and treatment) of pediatric FN. For each recommendation, the strength of the recommendation and level of evidence are presented.
Conclusion This guideline represents an evidence-based approach to FN specific to children with cancer. Although some recommendations are similar to adult-based guidelines, there are key distinctions in multiple areas. Implementation will require adaptation to the local context.
Khair K, Gibson F, Meerabeau L (2011) 'Just an unfortunate coincidence': children's understanding of haemophilia genetics and inheritance., Haemophilia 17 (3) pp. 470-475
This paper presents the results of a study talking to children and young people affected with severe haemophilia A and/or haemophilia B about their knowledge and understanding of genetics and inheritance. These data were gathered in a qualitative study using semi-structured interviews with thirty boys aged four to sixteen discussing the impact of haemophilia on their lives. Responses were tape recorded, transcribed and analysed, using thematic analysis; one of the themes identified was genetic knowledge which is presented in this paper. Genetic knowledge was formed within the context of normal day-to-day lives within families affected by haemophilia, with parents and haemophilia centre staff being sources of information about individual inheritance patterns as well as providers of information about the future genetic impact of having haemophilia.
Glenny AM, Gibson F, Auld E, Coulson S, Clarkson JE, Craig JV, Eden TOB, Khalid T, Worthington HV, Pizer B (2010) The Development of Evidence Based Guidelines on Mouth Care for Children, Teenagers and Young Adults Treated for Cancer, European journal of cancer 46 (8) pp. 1399-1412 Elsevier
The aim was to produce evidence-based guidelines on mouth care for children, teenagers and young adults receiving chemotherapy and/or radiotherapy.
Systematic reviews were undertaken and research was graded according to the methods of the Scottish Intercollegiate Guidelines Network. Where no relevant research was identified, an opinion-gathering process was undertaken.
?Best practice? recommendations were developed with regard to appropriate dental care and basic oral hygiene. An evaluation of oral assessment tools identified seven which had been assessed for reliability and/or validity. Only Eilers? Oral Assessment Guide was felt to be relevant for daily clinical practice.
A variety of interventions have been used for the management of oral mucositis, candidiasis, xerostomia and herpes simplex virus; few are supported by research evidence.
Careful oral management of children treated for cancer can improve the quality of life during treatment. The guidelines have the potential to improve patient care by promoting interventions of proven benefit and discouraging use of ineffective or potentially harmful practices which may result in adverse patient outcomes.
Modi N, Vohra J, Preston J, Elliott C, Van't Hoff W, Coad J, Gibson F, Partridge L, Brierley J, Larcher V, Greenough A (2014) Guidance on clinical research involving infants, children and young people: an update for researchers and research ethics, Archives of Disease in Childhood BMJ Publishing Group Ltd
Gibson F, Aldiss S, Horstman M, Kumpunen S, Richardson A (2010) Children and young people's experiences of cancer care: a qualitative research study using participatory methods., Int J Nurs Stud 47 (11) pp. 1397-1407
BACKGROUND: Little is known about whether children's cancer services actually meet children's needs, as the majority of previous research has sought the views of parents as proxies. OBJECTIVES: To explore children's and young peoples' views of cancer care and to present a conceptual model of communication and information sharing. SETTINGS: Three Principal Cancer Treatment centres in the United Kingdom. PARTICIPANTS: Thirty-eight participants at different stages of the cancer journey (e.g. on treatment, near end of treatment, up to 18 months following treatment) were grouped for data collection by age: young children (4-5 years), older children (6-12 years) and young people (13-19 years). METHODS: Data were collected concurrently over 6 months using age-appropriate, participatory-based techniques. Techniques included play and puppets, the draw and write method, interviews and an activities day. RESULTS: Some findings confirmed previously reported issues, such as, young children's inabilities to voice their preferences, and the importance of familiar environments and parental support for all ages. New findings suggested children worry about the permanence of symptoms, and older children are unhappy about their parents leading communications with health professionals. As communication and information sharing featured as an area in which children's and young people's preferences changed most dramatically, we propose a conceptual model of communication roles of patients, their parents, and health professionals to illuminate communication patterns. The model suggests children (aged 4-12 years) reside in the background of information sharing with health professionals until they gain autonomy as young people (around age 13). They then move into the foreground, and their parents transition into a supportive background role. Reviewing this model may help younger children realise their abilities to voice their preferences and older children to move into the foreground. Parents and professionals, in turn, can learn to develop in their supportive background roles. We encourage further testing of the model to define roles within relevant contexts. CONCLUSIONS: Overall, this study offers a perspective on the needs and preferences of children and young people receiving cancer care. Differences across ages were more striking with reference to preferences for communication. These differences are highly relevant to the way we communicate information to children and young peo
Growing evidence of the association between health professionals? well-being and patient and organisational outcomes points to the need for effective staff support. This paper reports a brief survey of the UK?s children?s cancer Principal Treatment Centres (PTCs) regarding staff support systems and practices. A short on-line questionnaire, administered in 2012-2013, collected information about the availability of staff support interventions which seek to prevent work-related stress to different members of the multi-disciplinary team (MDT). It was completed by a member of staff with, where required, assistance from colleagues. All PTCs (n=19) participated. Debriefs following a patient death was the most frequently reported staff support practice. Support groups were infrequently mentioned. There was wide variability between PTCs, and between professional groups, regarding the number and type of interventions available. Doctors appear to be least likely to have access to support. A few Centres routinely addressed work-related stress in wider staff management strategies. Two Centres had developed a bespoke intervention. Very few Centres were reported to actively raise awareness of support available from their hospital?s Occupational Health department. A minority of PTCs had expert input regarding staff support from clinical psychology/liaison psychiatry.
Gibson F, Auld EM, Bryan G, Coulson S, Craig JV, Glenny AM (2010) A systematic review of oral assessment instruments: what can we recommend to practitioners in children's and young people's cancer care?, Cancer Nurs 33 (4) pp. E1-E19
BACKGROUND: Observing and recording the signs and symptoms of oral mucositis are an important part of oral care, essential to the prevention and treatment of mucositis. Structured oral assessment enables a more informed and accurate identification of signs and symptoms and will enable early and individualized interventions. OBJECTIVE: A United Kingdom-based mouth-care group conducted a systematic review of the published literature through to March 2004 and repeated in 2008. The goal of this review was to identify and evaluate the range of instruments used to assess oral mucositis to recommend in evidence-based guidelines the "best" instrument to use in the field of children's and young people's cancer care. METHODS: Search sources included the Cochrane Library, MEDLINE, EMBASE, and CINAHL. Studies were selected using defined criteria and reviewed by 3 pairs of group members. RESULTS: Fifty-four individual oral assessment instruments were identified with only 15 reporting evidence of reliability and validity testing. Only 3 articles reported on oral assessment exclusively in our population. CONCLUSIONS: The guidelines recommend only 1 assessment instrument, the Oral Assessment Guide, or adaptations of this instrument, to be used in clinical practice. Five factors influenced this recommendation: purpose of assessment, population, outcomes assessed, and quality of the instrument and ease of use. IMPLICATIONS FOR PRACTICE: The Oral Assessment Guide has been consistently judged to be user-friendly and appropriate for everyday clinical practice with both adults and children, as well as a useful research tool.
Adolescents and young adults (AYA) face individual and social challenges different to other age groups that shape their experience of cancer and the associated psychological distress. This critical review examined the availability of AYA-specific psychosocial interventions in order to assess the impact they have and identify elements that make them successful. Five literature databases were searched for psychosocial intervention studies involving AYAs with cancer, on and off-treatment, aged 10-30 years, published between 1980 and 2016. Eleven out of 42 identified studies were included in the final review after quality assessment. All but two interventions showed positive results on at least one measure of psychosocial wellbeing. A distinctive difference between the supportive needs of those on and off-treatment was noted, and differences in intervention design and delivery formats were identified between the two sub-groups. Analysis of specific intervention characteristics that achieved the successful outcomes was more challenging due to the large variation in outcome measures used. This review demonstrates that psychosocial intervention research for AYA with cancer is increasing and the results show a potential benefit of intervention participation. Further work is needed to validate whether the benefits achieved by intervention participation remain over time.
Baggott C, Gibson F, Coll B, Kletter R, Zeltzer P, Miaskowski C (2012) Initial Evaluation of an Electronic Symptom Diary for Adolescents with Cancer, Journal of Medical Internet Research 1 (2) e23
Background: The delivery of optimal care depends on accurate communication between patients and clinicians regarding
untoward symptoms. Documentation of patients? symptoms necessitates reliance on memory, which is often imprecise. We
developed an electronic diary (eDiary) for adolescents and young adults (AYAs) with cancer to record symptoms.
Objective: The purpose of this paper is to describe the utility of an eDiary designed for AYAs with cancer, including dependability
of the mobile application, the reasons for any missing recorded data, patients? adherence rates to daily symptom queries, and
patients? perceptions of the usefulness and acceptability of symptom data collection via mobile phones.
Methods: Our team developed an electronic symptom diary based on interviews conducted with AYAs with cancer and their
clinicians. This diary included daily severity ratings of pain, nausea, vomiting, fatigue, and sleep. The occurrence of other selected
physical sequelae was assessed daily. Additionally, patients selected descriptors of their mood. A 3-week trial of the eDiary was
conducted with 10 AYA cancer patients. Mobile phones with service plans were loaned to patients who were instructed to report
their symptoms daily. Patients completed a brief questionnaire and were interviewed to elicit their perceptions of the eDiary and
any technical difficulties encountered.
Results: Overall adherence to daily symptom reports exceeded 90%. Young people experienced few technical difficulties and
reported benefit from daily symptom reports. Symptom occurrence rates were high and considerable inter- and intra-patient
variability was noted in symptom and mood reports.
Conclusions: We demonstrated the utility of an eDiary that may contribute insight into patients?symptom patterns to promote
effective symptom management.
Introduction Despite evidence of health inequalities for adults with intellectual disability (ID) there has yet to be a comprehensive review of how well hospital services are meeting the needs of children and young people (CYP) with ID and their families. We do not know how relevant existing recommendations and guidelines are to CYP, whether these are being applied in the paediatric setting or what difference they are making. Evidence of parental dissatisfaction with the quality, safety and accessibility of hospital care for CYP with ID exists. However, the extent to which their experience differs from parents of CYP without ID is not known and the views and experiences of CYP with ID have not been investigated. We will compare how services are delivered to, and experienced by CYP aged 5-15 years with and without ID and their families to see what inequalities exist, for whom, why and under what circumstances. Methods and analysis We will use a transformative, mixed methods case study design to collect data over four consecutive phases. We will involve CYP, parents and hospital staff using a range of methods; interviews, parental electronic diary, hospital and community staff questionnaire, patient and parent satisfaction questionnaire, content analysis of hospital documents and a retrospective mapping of patient hospital activity. Qualitative data will be managed and analysed using NViVo and quantitative data will be analysed using parametric and non-parametric descriptive statistics.
Ngwenya N, Kenten C, Jones L, Gibson F, Pearce S, Flatley M, Hough R, Stirling L, Taylor R, Wong G, Whelan J (2017) Experiences and preferences for end of life care for young adults with cancer and their informal carers: a narrative synthesis, Journal of Adolescent and Young Adult Oncology 6 (2) pp. 200-212
Mary Ann Liebert
Purpose To review the qualitative literature on experiences of and preferences for end of life care of people with cancer aged 16-40 years (young adults) and their informal carers. Methods A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods programme guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Results Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus and sample but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care whilst negative experiences were loss of ?self? and non-facilitative services and environment. Preferences included a family centred approach to care, honest conversations about end of life and facilitating normality. Conclusions There is little evidence focused on the end of life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end of life experiences and preference for young adults with cancer and their informal carers.
The aims of this paper are to describe the ongoing development of teenage and young adult cancer (TYA) services within the European Union, and develop consensus on key areas within the field. This survey used an e-Delphi design. An initial survey was distributed via email to professionals working in Europe. A snowball sampling technique was used to promote distribution. Consensus was sought over three rounds from October 2012 ? April 2015. Consensus was defined as > 80% agreement (?agree? or ?strongly agree?). Sixty professionals participated in round one, 106 in round two and 61 in round three. Twenty-six countries were represented across all rounds. Consensus was achieved for; the need for national policy guidance, the importance of patient choice, the validity of the International Charter of Rights for Young People and some aspects of multi-disciplinary working. There was 75% agreement on a single definition of the patient age range within TYA cancer care. European professionals with expertise in TYA cancer care reached consensus upon key elements of care for this group. The optimal TYA age-range remained an elusive topic on which to agree. The broad engagement and interest in TYA cancer across the EU through the ENCCA network was also demonstrated.
Introduction: The challenges of achieving timely cancer diagnosis in adolescents and young adults are recognised. However, contributing factors and associated clinical and psychosocial outcomes are poorly understood. Areas covered: We present a scoping review of existing evidence into time intervals to diagnosis and potential mechanisms influencing the identification of cancer symptoms and impact on a timely diagnosis. Charting data using Walters ?pathways to treatment? we summarise the diagnostic pathway into four interval categories: appraisal, help-seeking, diagnostic, and pre-treatment, and illustrate where evidence exists and where unanswered questions remain. Expert commentary: Whilst the research base has expanded over the last decade in cancer care there continues to be limited research that reveals the complexity of the timeliness of diagnosis in this population. There are unique issues facing this age group in terms of rarity of cancer, complexity of symptoms and problems with healthcare system access that create a constellation of challenges. We offer explanations for diagnostic difficulties in this age group, and explain how, with the limited available evidence, we are still seeking solutions to what is a uniquely complex problem.
Background There is evidence that the process of transition from paediatric (child) to adult health services is often associated with deterioration in the health of adolescents with chronic conditions.Transitional care is the term used to describe services that seek to bridge this care gap. It has been defined as ?the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems?. In order to develop appropriate services for adolescents, evidence of what works and what factors act as barriers and facilitators of effective interventions is needed. Objectives To evaluate the effectiveness of interventions designed to improve the transition of care for adolescents from paediatric to adult health services. Search methods We searched The Cochrane Central Register of Controlled Trials 2015, Issue 1, (including the Cochrane Effective Practice and Organisation of Care Group Specialised Register), MEDLINE, EMBASE, PsycINFO, and Web of Knowledge to 19 June 2015. We also searched reference lists of included studies and relevant reviews, and contacted experts and study authors for additional studies. Selection criteria We considered randomised controlled trials (RCTs), controlled before- and after-studies (CBAs), and interrupted time-series studies (ITSs) that evaluated the effectiveness of any intervention (care model or clinical pathway), that aimed to improve the transition of care for adolescents from paediatric to adult health services. We considered adolescents with any chronic condition that required ongoing clinical care, who were leaving paediatric services and going on to receive services in adult healthcare units, and their families. Participating providers included all health professionals responsible for the care of young people.
This mixed-methods study set in the West Midlands region of the UK demonstrates the effectiveness of Q methodology in examining general practitioners' (GPs') perception of their role in children's oncology palliative care.
Using data obtained from the analysis of semistructured interviews with GPs who had cared for a child receiving palliative care at home and bereaved parents, 50 statements were identified as representative of the analysis findings. 32 GPs with a non-palliative child with cancer on their caseload were asked to rank the statements according to their level of agreement/disagreement on a grid. They were then asked to reflect and comment on the statements they most and least agreed with. The data were analysed using a dedicated statistical software package for Q analysis PQMethod V.2.20 (Schmolck 2012). A centroid factor analysis was undertaken initially with 7 factors then repeated for factors 1?6. Varimax and manual flagging was then completed.
4 shared viewpoints were identified denoting different GP roles: the GP, the compassionate practitioner, the team player practitioner and the pragmatic practitioner. In addition consensus (time pressures, knowledge deficits, emotional toll) and disagreement (psychological support, role, experiential learning, prior relationships) between the viewpoints were identified and examined.
Q methodology, used for the first time in this arena, identified 4 novel and distinct viewpoints reflecting a diverse range of GP perspectives. Appropriately timed and targeted GP education, training, support, in conjunction with collaborative multiprofessional working, have the potential to inform their role and practice across specialities.
Purpose: To describe the development and implementation of the specialist nurse key worker role across 18 children?s cancer centres in the United Kingdom, and draw out significant factors for success to inform future development of the role across a range of specialities. Method: Data were obtained through 42 semi?structured interviews and a focus group with 12 key workers. Framework analysis revealed two main themes: models of care and key workers? perspectives of the role. Results: Four models of care were identified and described, roles were organised along a continuum of in reach and outreach with either the presence or absence of home visits and direct delivery of clinical care. Key workers? perspectives of the advantages of the role included: coordination of care (being the main point of contact for families/professionals), experience and expertise (communication/information) and the relationship with families. The main challenges identified were: time, caseload size, geographical area covered, staffing numbers and resources available in the hospital and community. Conclusion: The label ?key worker? was disliked by many participants, as the loss of ?specialist nurse? in the title failed to reflect professional group. Leaving aside terminology, key workers shared core role elements within a continuum of in reach and outreach work and their involvement in direct clinical care varied throughout the pathway. Irrespective of the model they worked in, the key worker provided clinical, emotional, educational, and practical support to families, through the coordination of care, experience and expertise and relationship with families and professionals.
Objectives: BRIGHTLIGHT is a national evaluation of cancer services for teenagers and young adults in England. Following challenges with recruitment, our aim was to understand more fully healthcare professionals? perspectives of the challenges of recruiting young people to a low-risk observational study, and to provide guidance for future recruitment processes.
Setting: National Health Service (NHS) hospitals in England.
Methods: Semistructured telephone interviews with a convenience sample of 23 healthcare professionals. Participants included principal investigators/other staff recruiting into the BRIGHTLIGHT study. Data were analysed using framework analysis.
Results: The emergent themes were linked to levels of research organisational management, described using the levels of social network analysis: micro-level (the individual; in this case the target population to be recruited?young people with cancer); meso-level (the organisation; refers to place of recruitment and people responsible for recruitment); and macro-level (the large-scale or global structure; refers to the wider research function of the NHS and associated policies). Study-related issues occurred across all three levels, which were influenced by the context of the study. At the meso-level, professionals? perceptions of young people and communication between professionals generated age/cancer type silos, resulting in recruitment of either children or adults, but not both by the same team, and only in the cancer type the recruiting professional was aligned to. At the macro-level the main barrier was discordant configuration of a research service with a clinical service.
Conclusions: This study has identified significant barriers to recruitment mainly at the meso-level and macro-level, which are more challenging for research teams to influence. We suggest that interconnected whole-system changes are required to facilitate the success of interventions designed to improve recruitment. Interventions targeted at study design/management and the micro-level only may be less successful. We offer solutions to be considered by those involved at all levels of research for this population.
Spathis A, Hatcher H, Booth S, Gibson F, Stone P, Abbas L, Barclay M, Brimicombe J, Thiemann P, McCabe M, Campsey R, Hooker L, Moss W, Robson J, Barclay S (2017) Cancer-Related Fatigue in Adolescents and Young Adults After Cancer Treatment: Persistent and Poorly Managed, Journal of Adolescent and Young Adult Oncology 6 (3) pp. 489-493
Mary Ann Liebert
Cancer-related fatigue is the most prevalent and distressing symptom experienced by adolescents and young adults (AYAs). An electronic survey was undertaken to ascertain current fatigue management and perceptions of its effectiveness. 85% of responders (68/80) experienced fatigue, and it was worse more than one year after cancer treatment ended, compared to less than one year (p=0.007). 41% received no fatigue management. Although advice to exercise was the most frequent intervention, the greatest impact of fatigue was on the ability to exercise and most did not find exercise advice helpful. Early intervention is warranted, supporting AYAs to persevere with increasing activity.
Venepuncture for blood sampling is a needle-related medical procedure most feared by children. We sought to develop and evaluate a prototype ?tool? to help prepare for blood tests.
A user-experience design, using creative arts/art making was utilized. Twenty-three children aged 4-12 with haematological conditions participated. Phase 1 involved children working with a professional illustrator to develop a blood preparatory ?tool?. Phase 2 involved children using a paper prototype of the ?tool? and providing feedback.
Children indicated they wanted the ?tool? to be a game to use before blood tests. Drawing on the work carried out with children, and with input from our advisory group a Blood Quest game was developed. The game was designed to take children on a journey around the body, learning facts about the blood and completing simple blood related activities. Half of all children said they felt better about having their blood taken after playing the ?Blood Quest? game and half reported feeling the same. The majority of children who tested the game found it fun and informative, with 12 of the 16 participants reporting having learnt something new about the blood.
The end product was well received. This small-scale pilot evaluation suggests that with further refinement, the game has the potential for young children to feel more informed and less frightened about having their blood taken.
Duong Nathan, Davis Hailey, Robinson Paula D., Oberoi Sapna, Cataudella Danielle, Culos-Reed S. Nicole, Gibson Faith, Götte Miriam, Hinds Pamela, Nijhof Sanne L., Tomlinson Deborah, van der Torre Patrick, Ladas Elena, Cabral Sandra, Dupuis L. Lee, Sung Lillian (2017) Mind and body practices for fatigue reduction in patients with cancer and hematopoietic stem cell transplant recipients: A systematic review and meta-analysis, Critical Reviews in Oncology/Hematology 120 pp. 210-216
To determine whether non-physical activity mind and body practices reduce the severity of fatigue in patients with cancer or hematopoietic stem cell transplant (HSCT) recipients compared to control interventions.
We included randomized trials which compared non-physical activity mind and body practices compared with control interventions for the management of fatigue in cancer and HSCT patients.
Among 55 trials (4975 patients), interventions were acupuncture or acupressure (n?=?12), mindfulness (n?=?11), relaxation techniques (n?=?10), massage (n?=?6), energy therapy (n?=?5), energizing yogic breathing (n?=?3) and others (n?=?8). When combined, all interventions significantly reduced fatigue severity compared to all controls (standardized mean difference ?0.51, 95% confidence interval ?0.73 to ?0.29). More specifically, mindfulness and relaxation significantly reduced fatigue severity.
Mindfulness and relaxation were effective at reducing fatigue severity in patients with cancer and HSCT recipients. Future studies should evaluate how to translate these findings into clinical practice across different patient groups.
Tomlinson D, Robinson P, Oberoi S, Cataudella D, Culos-Reed N, Davis H, Duong N, Gibson F, Götte M, Hinds P, Nijhof S, van der Torre P, Dupuis L, Sung L (2017) Pharmacological interventions for fatigue in cancer and transplant meta-analysis, Current Oncology
Background: Objective was to determine whether pharmacological interventions reduce the severity of fatigue in patients with cancer or hematopoietic stem cell transplant (HSCT) recipients as compared to control interventions.
Methods: We conducted a systematic review and searched MEDLINE, Embase, Cochrane Central Register of Controlled Trials, CINAHL and PsychINFO for randomized trials of systemic pharmacological interventions for the management of fatigue in patients with cancer or HSCT recipients. Two authors independently identified studies and abstracted data. Methodological quality was assessed using the Cochrane Risk of Bias tool. Primary outcome was fatigue severity across different fatigue scales. Data were synthesized with random effects models.
Results: There were 117 trials (19,819 patients) included. Pharmacological agents were: erythropoietins (n=31); stimulants (n=19); L-carnitine (n=6); corticosteroids (n=5); anti-depressants (n=5), appetite-stimulants (n=3) and other agents (n=48). Erythropoietin (standardized mean difference (SMD) -0.52, 95% confidence interval (CI) -0.89 to -0.14) and methylphenidate (SMD -0.36, 95% CI -0.56 to -0.15) significantly reduced fatigue while modafinil/armodafinil and corticosteroids were not effective.
Conclusions: Erythropoietin and methylphenidate significantly reduced fatigue severity in patients with cancer and in HSCT recipients. Concerns regarding the safety of these agents may limit their usefulness. Future research should identify effective interventions for fatigue with minimal adverse effects.
The need to review health service provision for children and young people (CYP) with disabilities and their families in the United Kingdom has been expressed in multiple reports: the most consistent message being that services need to be tailored to meet their individual needs. Our aim was to understand the hospital related needs and experiences of CYP with intellectual disabilities.
An ethnographic study of a neurosciences ward and out-patient department was conducted within a paediatric tertiary hospital setting.
Five themes, developed using the acronym LEARN, explained what is important to CYP with intellectual disabilities in hospital; 1) Little things make the biggest difference, 2) Eliminate unnecessary waiting, 3) Avoid boredom, 4) Routine and home comforts are key and 5) Never assume.
It is imperative that we continue to challenge the idea that it is acceptable to exclude CYP with intellectual disabilities from research because of their inability to participate.
Oberoi Sapna, Robinson Paula D., Cataudella Danielle, Culos-Reid Nicole, Davis Hailey, Duong Nathan, Gibson Faith, Götte Miriam, Hinds Pamela, Nijhof Sanne L, Tomlinson Deborah, van der Torre Patrick, Cabral Sandra, Dupuis LLee, Sung Lillian (2017) Physical activity reduces fatigue in patients with cancer and hematopoietic stem cell transplant recipients: A systematic review and meta-analysis of randomized trials, Critical Reviews in Oncology/Hematology 122 pp. 52-59
Objective was to determine whether physical activity reduces the severity of fatigue in patients with cancer or hematopoietic stem cell transplant (HSCT) recipients.
We conducted a meta-analysis of randomized trials comparing physical activity with control interventions for the management of fatigue in patients with cancer or HSCT recipients.
There were 170 trials included. Physical activity reduced the severity of fatigue when compared to all control groups (standardized mean difference ?0.49, 95% confidence interval ?0.60 to ?0.37; P/0.00001). Aerobic, neuromotor, resistance and combination exercises were all effective in reducing fatigue although smaller effects were observed with resistance exercises (P interaction/=/0.01). Other intervention and patient characteristics did not influence the effect of physical activity on the severity of fatigue.
Physical activity was effective at reducing fatigue in patients with cancer and HSCT recipients across patient sub-groups. Determining the best approaches for safe implementation should be a priority.
Cancer is the leading cause of disease death for Adolescents and Young
Adults (AYA) in developed countries. It is believed that young people
experience prolonged intervals to cancer diagnosis but evidence
quantifying this and identifying higher risk patient sub-groups is
lacking. We examined diagnostic timeliness in a cohort of AYA with
incident cancers, identifying factors associated with variation in
We analysed data from 830 AYA aged 12-24 who completed BRIGHTLIGHT faceto-
face interviews, for variation in the patient interval (time from
symptom onset to first healthcare presentation), the number of prereferral
General Practitioner (GP) consultations, and the symptom onsetto-
diagnosis interval (time from symptom onset to diagnosis). We present
descriptive statistics of outcomes by patient characteristics and cancer
site and multivariable regression models for adjusted estimates of
Among participants, 27% (204/748) experienced a patient interval of >1
month and 35% (242/701) of those consulting a GP had 3 or more prereferral
consultations. The median symptom onset-to-diagnosis interval
was 58 days. There was statistically significant variation for 3 or more
consultations and symptom onset-to-diagnosis interval by gender
(p=0.0093) and cancer site (p
or more consultations and longer symptom onset-to-diagnosis intervals.
Patients with lymphoma or bone tumours were most likely to have 3 or more
consultations and those with melanoma least likely; females and those
with bone tumours had the longest median symptom onset-to-diagnosis
intervals and leukaemia the shortest.
The findings benchmark for diagnostic timeliness in young people with
cancer, identifying subgroups at higher risk of a prolonged diagnostic
journey and providing a point of reference for comparisons. Further work
is now required to understand reasons, and prioritise and stratify early
diagnosis initiatives for AYA.
Background: For adolescents and young adults living in high-income countries cancer remains the most common disease-related death. Increasing survival rates and projected longevity are positive outcomes, although long-term consequences of cancer and/or its treatment will likely increase the global burden of cancer. In low and middle-income countries the impact and needs of young adults with cancer are largely unknown and require further attention. However, universal studies have revealed that cancer-related needs for this group are multifactorial, complex and largely unmet. In response to these findings, the body of work on supportive care for young adults with cancer is growing. Yet, there is no published research in the context of the United Kingdom, regarding the role young adults play in managing their supportive cancer care needs.
Objective: To explore the experience, purpose and meaning of supportive cancer care to young adults recently diagnosed with cancer.
Design, setting and participants: Using constructivist grounded theory, data were collected in one to one interviews with eleven young adults (seven women and four men aged 19-24 years) being treated for cancer in two English hospitals. Data were analyzed using open and focused coding, constant comparison, theoretical coding and memoing, and this enabled construction of a subjective theory.
Results: Young adults in this study interpreted cancer as an interruption to the events, experiences and tasks forming the biographical work of their adult identity. Data analysis led to the construction of the theory, ?protecting an adult identity: self in relation to a diagnosis of cancer in young adulthood?. This theory arose from three categories: fragility of self, maintaining self in an altered reality and mobilizing external resources. Young adults faced the loss of their early adult identity. Interpreting cancer as a temporary interruption, they sought to re-establish their identity by directly and indirectly managing their supportive care needs.
Conclusions: These findings contribute to the understanding of young adults? desired purpose of supportive cancer care. There are also implications for how health and social care professionals provide supportive care interventions to meet the needs of this population
Effective communication is central to children, young people and their families? experiences of healthcare. Most patient complaints in developed health care systems result from ineffective communication including: inadequate information provision; not feeling listened to; failure to value patients concerns; and patients not feeling involved in care decisions. Advanced communication skills training is now embedded within cancer care policy in the United Kingdom and now features prominently within cancer education in many countries. Here we share findings from a research evaluation of an Advanced Communication Skills Training program dedicated to health professionals caring for children and young people with cancer. We evaluated participants? (n = 59) perceptions of the program, impact on their skills, knowledge, competence and confidence. An Appreciative Inquiry design was adopted; data included interviews, pre-post course evaluations, e-mail blog survey and 360-degree reflective work records. The framework approach underpinned data analysis and triangulation of data sets. Key findings highlighted good and poor practice in health professionals? engagement with children, young people and their families; the purpose of communicating effectively was not always consistent with collaborative working. Attending a program helped participants expand their knowledge of communication theories and strategies. Participants valued using simulated scenarios to develop their skills, and were keen to use their new skills to enhance care delivery. Our emphasis within this evaluation, however remained on what was communicated, when and how, rather than to what effect. The impact of programs such as these must now be evaluated in terms of patient benefit.
Oulton K, Gibson F, Carr L, Hassiotis A, Jewitt C, Kenten C, Russell J, Whiting M, Tuffrey-Wijne I, Wray J (2018) Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study., BMC Health Services Research 18 (203)
Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission?s (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies13. What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs.
Individual interviews (n=65) and anonymised online survey (n=2261) were conducted with hospital staff working with CYP in 15 children?s and 9 non-children?s hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Ethics approval was obtained and verbal or written consent for data collection was obtained from all interview participants.
The nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD.
Findings indicate inequality with regards the provision of high quality hospital care to children and young people with intellectual disabilities that meets their needs.
There is a pressing need to understand the impact this has on them and their families.
Background: Many parents report a strong desire to take on information-giving roles, and believe they are best positioned to discuss their child?s illness with their child. Healthcare professionals have a supporting role to reduce the burden on parents who feel responsible for conveying information to their child and other family members.
Objective: To examine parents? and healthcare professionals? perceptions of roles in receiving and communicating information when a child is diagnosed with and treated for acute lymphoblastic leukaemia.
Design, setting and participants: We used the principles of a grounded theory approach. This was a single site study, recruiting from a principal children?s cancer treatment centre in the United Kingdom. The sample included parents of children receiving and completed treatment for acute lymphoblastic leukaemia (n=28), and healthcare professionals (n=34).
Methods: Methods included individual interviews, face-to-face and telephone, focus groups, and an online forum.
Findings: Communication ?touch points? are many over the course of a child?s cancer journey. We describe often ?mismatched? communication encounters where those seeking information and those providing information have different goals. Healthcare professionals in the encounter have expertise at the outset while parents have less expertise, but this expertise grows over time and this can increase the perceptions of this ?mismatch? and create different challenges.
Conclusions: Considered in the context of middle range transition theory, we might suggest that parental foreground (seeking information directly) and background (passive actors) roles are the result of differing levels of uncertainty, and depend on the situation and preferences and child and family needs that may present differently over time in different contexts. Our work contributes to the emerging consensus that communication is more than a core set of skills that healthcare professionals just need to learn: clear specifications of mutual roles, responsibilities and a shared understanding of goals is also essential.
Background: Congenital heart disease (CHD) is the most common class of birth defects, which encompasses a broad spectrum of severity ranging from relatively minor to extremely complex. Improvements in surgery and intensive care have resulted in an increasing number of infants with the most complex lesions surviving after surgery until the time of discharge from the hospital, but there remain concerns about out-of-hospital mortality, variability in how services are provided at the time of discharge and beyond, and difficulties experienced by some families in accessing care.
Objective: As part of a mixed-methods program of research, this study aimed to elicit parental experiences of caring for a child with CHD after hospital discharge following a cardiac surgery and collect information to inform interviews for a subsequent stage of the project.
Methods: A closed online discussion group was set up via the main Facebook page of the Children?s Heart Federation (CHF), a national charity offering support to children with heart disease and their families. The discussion group was advertised through the charity?s webpage, and interested participants were directed to the charity?s Facebook page from where they could access the closed Facebook group and respond to questions posted. The CHF moderated the forum, and the research team provided questions to be posted on the forum. Responses were collated into a single transcript and subjected to thematic analysis.
Results: The forum was open for 4 months, and 91 participants (mean age 35 years, range 23-58 years, 89 females, 89 parents, and 2 grandparents) submitted demographic information and were given access to the closed forum group. A common experience of isolation emerged from the data, with descriptions of how that isolation was experienced (physical, social, knowledge) and its psychological impact, together with the factors that made it worse or better. Woven through this theme was the notion that parents developed expertise over time.
Conclusions: The use of an online forum provided a means for eliciting data from a large number of parents regarding their experiences of caring for their child after hospital discharge following cardiac surgery. Parents engaged with the forum and were able to articulate what went well and what went less well, together with sharing their stories and supporting each other through doing so. Some parents clearly found participating in the forum a positive experience in itself, demonstrating the potential of social media as a mechanism for providing support and reducing isolation. Information gained from the forum was used to shape questions for interviews with parents in a subsequent phase of the study. Furthermore, the themes identified in the online forum have contributed to identifying ways of improving the provision of care and support for parents of high-risk babies following discharge after cardiac surgery.
This study aimed to: 1) explore views of known experts leading on transition, 2) gather insights on the essential features of transitional care models, 3) highlight opportunities for and barriers to change: to inform core elements of benchmarks for transitional care. We held three workshops (n=20), and used a telephone interview (n=1) with health and social care professionals with expertise working with young people with a range of health conditions and disabilities. The workshops included individual brainstorming, and group discussion. Data were analysed using qualitative content analysis. The general consensus from stakeholders? discussions about transition was that, ?things have become stuck?. Themes included: professionals? attitudes towards and knowledge about young people and transition, organisational barriers and ?lack of joined up thinking? between services. Our work offers further insight into experts? perceptions of transition services within the United Kingdom. It is clear there is still much to be done to improve transition, to better meet the needs of young people and parents and begin to offer equitable access to transitional care programmes. The benchmarks offer a starting point for professionals seeking to improve transition through enabling the identification of gaps in services and providing a platform to share successful practice initiatives.
Low recruitment of adolescents and young adults in cancer clinical trials is widely reported and may be linked to limited improvements in survival. Research to date does not adequately explain all underlying reasons for poor trial accrual. This paper reports health professional perceptions of communicating with adolescents and young adults with bone sarcoma about clinical trial participation.
This study used narrative inquiry. Findings are reported from thematic analysis of in-depth interviews with 18 multidisciplinary health professionals working in a supra-regional bone and soft tissue sarcoma centre.
Participants described professional expertise, the development of specialist knowledge and skills and strategies used to develop trusting relationships with adolescents and young adults with bone sarcoma. These factors were perceived to facilitate communication about clinical trial participation. Emergent themes were having credibility through expertise of the team, developing specialist communication skills through reflection on practice, having inclusive approaches to education and training about clinical trials, individual communication styles used to form trusting relationships, using a patient-centred approach to connect with adolescents and young adults, creating time needed to form trusting relationships and effective team working.
We aligned findings of this study with characteristics of patient-physician trust and provide a basis for transferable recommendations. Our findings can be used to inform the development of age-specific, specialist communication skills and highlight health professional education needs about clinical trials. Additional research is needed to explore which elements of team working optimise improved clinical trial participation, in what contexts and why.
Increased emphasis on the child?s voice and point of view in care and treatment has led to an
expansion in the development of methods to access and identify their perspectives. Drawing
on our experiences in a study of children with leukemia in hospital, this article explains the
challenges and opportunities that arise in the use of five commonly used methods in a study
of hospitalized children?s experiences with health care professionals, including: the ?Draw
and Write? technique; a sticker activity; a paper person exercise; informal interviews; and
participant observation. Each of these methods was examined with regard to ease of use, data
generation, and utility of data for accessing children?s perspectives and development of initial
Teenage and young adult cancer care in England is centralised around 13 principal treatment centres, alongside linked ?designated? hospitals, following recommendations that this population should have access to ?age-appropriate care?. The term ?age-appropriate care? has not yet been defined: it is however the explicit term used when communicating the nature of specialist care. The aim in this study was to develop an evidence-based, contextually relevant and operational model defining ?age-appropriate care? for teenagers and young adults with cancer.
Patients and methods:
A mixed methods study was conducted comprising (i) semi-structured interview data from young people with cancer and healthcare professionals involved in their care (ii) an integrative literature review to identify current understanding and use of the term ?age-appropriate care? (iii) synthesis of both sets of data to form a conceptual model of age-appropriate care. A combination of qualitative content, thematic and framework analysis techniques were used to analyse and integrate data.
Analysis and synthesis across data sources enabled identification of seven core components of age-appropriate care, which are presented as a conceptual model: best treatment; healthcare professional knowledge; communication, interactions and relationships; recognising individuality; empowering young people; promoting normality; and the environment. Sub-themes of healthcare professional clinical and holistic expertise and the environment comprising of both physical and social elements also emerged.
The proposed model, necessarily constructed from multiple components, presents an evidence-based, comprehensive structure for understanding the nature of ?age-appropriate care?. It will be useful to clinicians, health service managers and researchers who are designing, implementing and evaluating interventions that might contribute to the provision of age-appropriate care. While the individual elements of age-appropriate care can exist independently or in part, age-appropriate care is optimal when all seven elements are present, and could be applied to the care of young people with long-term conditions other than cancer.
This study explored the relationships among resilience, self-esteem, and depressive symptoms in Hong Kong Chinese adolescents. We selected a stratified random sample of 1816 Form 1 students from all 18 districts of Hong Kong. This study revealed that about 21% adolescents are experiencing some depressive symptoms. Our results contribute novel findings to the literature showing that resilience is a strong indicator of adolescents at a higher risk of depression and increasing adolescents? resilience to psychological distress is crucial to enhance their mental wellbeing. It is crucial to develop interventions that can enhance resilience and promote positive mental wellbeing among adolescents.
Adolescent and Young Adult (AYA) Oncology research is steadily but perceptibly entering a more mature phase. Adolescent and Young Adult-specific services have existed for almost 30 years, embedded in England since the National Institute for Health and Care Excellence (NICE) published guidance in 2005 directing where and how AYA aged 16-24 years were to be treated and cared for. Similar progress is being made with services across the world, where the lower age is considered to be in the region of 13 years at diagnosis and the upper age ranging from 29-39 years depending on jurisdiction (Husson, Manten-Horst et al., 2016, Saloustros, Stark et al., 2017, Stark, Bielack et al., 2016). Somewhat later than the development of specialist services was the need to evaluate the outcomes associated with such services, subsequently there has been an increase in high quality, programmatic research to evaluate and guide services (Parsons, Harlan et al., 2015, Stark, Bielack et al., 2016, Whelan J, 2012, White, Daly et al., 2016).
Young people with cancer, broadly those aged 13-24 years at diagnosis, warrant special
attention; physiological and psychological growth creates complex psychosocial needs which
neither adult nor child systems are suitably designed to deal with. Resulting from these
needs, they are often described as ?vulnerable?, ?hard to reach? and ?difficult to engage?, and consequently are often over looked for patient and public involvement/engagement (PPIE)
roles. In our study ?BRIGHTLIGHT?, we set out to evaluate whether specialist care for young
people adds value, ensuring young people were central to our PPIE activities. We believe
that BRIGHTLIGHT is unique as a very large study of young people with cancer which has
successfully overcome the challenges of including young people in the research process so
we are confident that they have influenced every aspect of study design, conduct and
We chronicle a period of 10 years, over which we describe our approach and our methods to
involving young people in PPIE activities in BRIGHTLIGHT. We describe the feasibility work,
study set up, conduct and dissemination of our findings, and weave through our story of
PPIE to illustrate its benefits. Through the narration of our experience we highlight significant
points that both influenced and changed our direction of travel. We reflect on our
experiences and offer some practical advice for those looking to do the same.
In the ten years since the BRIGHTLIGHT feasibility work began we have involved more than
1,200 young people. Their contributions have been isolated and mapped over a 10-year
period. We begin at an early step of identifying what research questions to prioritize, we then
plot PPIE activities for one of these research priorities, place of care, which evolved into
BRIGHTLIGHT. We document steps along the way to evidence the impact of this
Young people can make a valuable contribution to healthcare research given adequate
support from the research team. Although some challenges exist, we propose that the
benefits to young people, researchers and the study considerably outweigh these challenges
and PPIE with young people should be integrated in all similar research studies.
Kenten Charlotte, Ngwenya Nothando, Gibson Faith, Flatley Mary, Louise Jones, Susie Pearce, Wong Geoff, Black Kath, Haig Sue, Hough Rachael, Hurlow Adam, Stirling L. Caroline, Taylor Rachel M, Tookman Adrian, Whelan Jeremy Understanding care when cure is not likely for young
adults who face cancer: a realist analysis of data
from patients, families and healthcare professionals, BMJ Open
BMJ Publishing Group
Objectives: To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16-40 years and how this might affect care.
Design: We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care.
Setting: Three cancer centres and associated palliative care services across England. Participants: We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16-24 years for whom there may be specialist cancer centres and those 16-40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16-24 years and 30 people 25-40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma;central nervous system tumours) with a clinician-estimated prognosis of less than 12 months along with nominated family carers and healthcare professionals. Nineteen bereaved family members and 47 healthcare professionals participated in workshops.
Results: Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals;financial concerns.
Conclusions: Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16-40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.
Readers of this journal are well placed to reflect on the highs and lows of receiving grant funding. I am recalling a respected pediatric oncologist offering me encouraging words when in the midst of a grant application: saying ?you stand a better chance of getting a grant when you submit to the call than if you didn?t!? Disappointment or success is not my focus here. Rather, my focus is on how research priorities described by healthcare professionals, with and without the inclusion of the voice of their respective patient groups, influences research undertaken in our various cancer populations.
Kenten Charlotte, Ngwenya Nothando, Gibson Faith, Flatley Mary, Jones Louise, Pearce Susie, Wong Geoff, Black Kath M, Haig Sue, Hough Rachael, Hurlow Adam, Stirling L Caroline, Taylor Rachel M, Tookman Adrian, Whelan Jeremy (2019) Understanding care when cure is not likely for young adults who face cancer: a realist analysis of data from patients, families and healthcare professionals, BMJ Open 9 (1)
BMJ Publishing Group
Objectives To understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16?40 years and how this might affect care.
Design We used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care.
Setting Three cancer centres and associated palliative care services across England.
Participants We aimed for a purposive sample of 45 people with cancer from two groups: those aged 16?24 years for whom there may be specialist cancer centres and those 16?40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16?24 years and 30 people 25?40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of Â12 months along with nominated family carers and healthcare professionals. 19 bereaved family members and 47 healthcare professionals participated in workshops.
Results Data were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns.
Conclusions Current care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16?40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.
Loeffen Erik A. H., Stinson Jennifer N., Birnie Kathryn A., van Dijk Monique, Kulkarni Ketan, Rijsdijk Mienke, Font-Gonzalez Anna, Dupuis L. Lee, van Dalen Elvira C., Mulder Renée L., Campbell Fiona, Tissing Wim J. E., van de Wetering Marianne D., Gibson Faith (2019) Measurement properties of instruments to assess pain in children and adolescents with cancer: a systematic review protocol, Systematic Reviews 8 33 pp. 1-8
Pain in children and adolescents with cancer has been identified as an area where many healthcare professionals seek guidance. This protocol details a systematic review whose aim is to explore current knowledge regarding measurement instruments to assess pain (and pain-related distress) in children and adolescents with cancer. After completion of the review, the information will be used in the development of a clinical practice guideline.
We will search four electronic databases (MEDLINE via PubMed, CINAHL, PsycINFO and HaPI). Additional relevant studies will be identified by reference checking and expert consultation. All citations will be screened independently by two reviewers in a three-step approach: first selection based on title, second selection based on abstract, third selection based on full-text. Studies in children and adolescents with cancer that aimed to evaluate the clinimetric properties of an existing pain measurement instrument or to develop a new pain measurement instrument and that include at least one relevant outcome (reliability, validity, responsiveness, interpretability, clinical utility) are eligible for inclusion. For all steps of evidence selection, a detailed list with eligibility criteria will be determined a priori. Data extraction and quality assessment of included studies (according to the COnsensus-based Standards for the selection of health Measurement INstruments, COSMIN criteria) will be conducted independently by two authors.
This systematic review will provide an overview of the current literature regarding measurement instruments to assess pain in children and adolescents with cancer. This knowledge synthesis will be used to formulate recommendations for clinical practice. Also, by synthesizing existing evidence, knowledge gaps will be identified.
Taylor Rachel, Fern Lorna, Barber Julie, Alvarez Galvez Javier, Morris Stephen, Feltbower Richard, Hooker Louise, McCabe Martin G, Gibson Faith, Raine Rosalind, Stark Dan, Whelan Jeremy (2019) Description of the BRIGHTLIGHT Cohort: the evaluation of teenagers and young adult cancer services in England, BMJ Open
BMJ Publishing Group
Objective: International recognition of the unique needs of young people with cancer is
growing. Many countries have developed specialist age-appropriate cancer services
believing them to be of value. In England, 13 specialist Principal Treatment Centres (PTC)
deliver cancer care to young people. Despite this expansion of specialist care, systematic
investigation of associated outcomes and costs has to date, been lacking. The aim of this
paper is to describe recruitment and baseline characteristics of the BRIGHTLIGHT cohort,
and the development of the bespoke measures of levels of care and disease severity, which
will inform the evaluation of cancer services in England.
Design: Prospective, longitudinal, observational study.
Setting: Ninety-seven NHS hospitals in England.
Participants: A total of 1,114 participants were recruited diagnosed between July 2012 and
December 2014: 55% (n=618) male, mean age was 20.1 years (SD=3.3), most (86%) were
white and most common diagnoses were lymphoma (31%), germ cell tumour (19%) and
Results: At diagnosis, median quality of life score was significantly lower than a published
control threshold (69.7 points); 40% had borderline-severe anxiety, and 21% had borderlinesevere
depression. There was minimal variation in other patient-reported outcomes
according to age, diagnosis or severity of illness. Survival was significantly worse in the
Cohort than for young people diagnosed during the same period who were not recruited
(cumulative survival probability 4 years after diagnosis: 88% vs. 92%).
Conclusions: Data collection was completed in March 2018. Longitudinal comparisons will
determine outcomes and costs associated with access/exposure to PTCs. Findings will
inform international intervention and policy initiatives to improve outcomes for young people
Growing consensus describes it as ?inappropriate? to deliver care to young people in either child or adult environments of care or in settings not equipped to meet their psychosocial needs. The aim of this review was to identify what patient and professional experience tells us about the culture of care specific to young people receiving cancer care in the UK.
A narrative review of published, UK-based research was conducted. Five online databases were searched using terms related to ?culture of care?, ?cancer? and ?adolescent?. Papers were assessed for relevance, according to pre-determined criteria: 19/1366 identified papers met our inclusion criteria.
Studies included in this review were predominantly reflective of care received in specialist units. The findings were in support of ?young people-friendly?, ?tailored environments?, showing how they facilitate young people to have positive experiences of care. Communication, information delivery and patient choice were themes that were central to the culture of care.
Highlighted was the need to provide care beyond addressing clinical needs through a young-person centred approach, to facilitate optimal experiences of care. However, to fully understand the culture of care, research needs to focus on the delivery of care outside of specialist units.
Children and young people with learning disabilities experience poor health outcomes and lengthier hospital admissions than those without learning disabilities. No consistently applied, systematic approach exists across the NHS to identify and record this population. This paper describes practices in English hospitals to identify children and young people with learning disabilities.
Interviews: 65 NHS staff. Questionnaire: 2,261 NHS staff. Conducted across 24 NHS hospitals in England.
No standardized approach exists to identify children or young people with a learning disability or for this information to be consistently recorded, communicated to relevant parties within a hospital, Trust or across NHS services. Staff reported a reliance on parents to inform them about their child's needs but concerns about ?flagging? patients might be a significant barrier.
Without an integrated systematic way across the NHS to identify children with learning disabilities, their individual needs will not be identified.
Objectives: Juvenile Dermatomyositis is a rare, potentially life-threatening condition with no known cure. There is no published literature capturing how children and young people feel about their condition, from their perspective. This study was therefore unique in that it asked children and young people what is it like to live with Juvenile Dermatomyositis.
Methods: Data were obtained from fifteen young people with Juvenile Dermatomyositis, between eight and nineteen years of age from one Paediatric Rheumatology department using audio-recorded interpretive phenomenology interviews. Data were analyzed phenomenologically, using a process that derives narratives from transcripts resulting in a collective composite of participants shared experiences, called a ?phenomenon?.
Results: The overarching metaphor of a rollercoaster captures the phenomenon of living with Juvenile Dermatomyositis as a young person, with the ups and downs at different time points clearly described by those interviewed. The five themes plotted on the rollercoaster, began with confusion; followed by feeling different, being sick, steroidal and scared from the medications; uncertainty; and then ended with acceptance of the disease over time.
Young people were able to talk about their experiences about having Juvenile Dermatomyositis. Our findings will aid clinicians in their practice by gaining a deeper understanding of what daily life is like and highlighting ways to enhance psychosocial functioning. Hopefully, this study and any further resulting studies, will raise understanding of Juvenile Dermatomyositis worldwide and will encourage health care professionals to better assess psychosocial needs in the future.
Qualitative research is about people?s lives; their stories, their thoughts, their feelings, and their experiences. Researchers continue to reflect on the best way to present other people?s stories in a way that stays true to their accounts and delivers the message in a manner which resonates. This article presents one such way, discovered through serendipity, which allowed the researcher to share findings from young people?s stories eloquently and passionately to audiences of healthcare professionals from different disciplines. The silence and raw emotion witnessed after the poetry delivery was akin to that often seen during childbirth when those around are stunned into thoughtful awe. The poetry, which was crafted entirely from young participant?s interview transcripts had two benefits; 1) sharing young people?s stories using their own words and 2) using a presentation format that demanded attention; so that people took notice, listened and reflected on the words and experiences being expressed.
Aldiss Susie, Fern Lorna A, Phillips Robert S, Callaghan Amy, Dyker Karen, Gravestock Helen, Groszmann Michael, Hamrang Leila, Hough Rachael, McGeachy Demi, Morgan Sue, Smith Sam, Upadhyaya Sheela, Veitch Helen, Veitch Lara, Williamson Max, Whelan Jeremy S, Gibson Faith (2019) Research priorities for young people with cancer: a UK priority setting partnership with the James Lind Alliance, BMJ Open 9 (8) e028119 pp. 1-10
BMJ Publishing Group
Objectives To conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify and prioritise research questions to inform decisions of research funders and support the case for research with this unique cancer population.
Design James Lind Alliance Priority Setting Partnership.
Setting UK health service and community.
Methods A steering group oversaw the initiative and partner organisations were recruited. Unanswered questions were collected in an online survey. Evidence searching verified uncertainties. An interim survey was used to rank questions prior to a final prioritisation workshop.
Participants Young people aged 13?24 years with a current or previous cancer diagnosis, their families, friends, partners and professionals who work with this population.
Results Two hundred and ninety-two respondents submitted 855 potential questions. Following a refining process and removal of ?out of scope? questions, 208 unique questions remained. Systematic evidence checking identified seven answered questions and 16 were the subject of ongoing studies. The interim survey was completed by 174 participants. The top 30 questions were prioritised at a workshop attended by 25 young people, parents and multidisciplinary professionals. The top three priorities are: (1) What psychological support package improves psychological well-being, social functioning and mental health during and after treatment? (2) What interventions, including self-care, can reduce or reverse adverse short-term and long-term effects of cancer treatment? (3) What are the best strategies to improve access to clinical trials? The remaining questions reflect the complete cancer pathway: new therapies, life after cancer, support, education/employment, relapse and end-of-life care.
Conclusions We have identified shared research priorities for young people with cancer using a rigorous, person-centred approach involving stakeholders typically not involved in setting the research agenda. The breadth of priorities suggest future research should focus on holistic and psychosocial care delivery as well as traditional drug/biology research.
Despite increasing international awareness of the impact of cancer on young adults, to date there has been limited in-depth research to understand their experiences following a diagnosis using a qualitative and longitudinal perspective.
To explore the impact of cancer on young adults? evolving sense of self and identity over one year from the time of diagnosis. In addition, to contribute further to an understanding of innovative research methods used to examine this experience.
This was a longitudinal narrative study using visual methods and a psychosocial lens. Narrative was used to re-present experiences over time.
Setting and Sample
Recruitment was from a Principal Treatment Centre for Teenagers and Young Adults with Cancer and a Cancer Centre for Adults in the United Kingdom. Total population sampling was used over a six-month period, recruiting 18 young adults aged between 16 and 30, one to three months from a diagnosis of bone cancer, lymphoma or leukaemia.
In depth, free association narrative interviews at three-time points over a year were undertaken. Photographs were used to help with story-telling. Extensive reflexive field notes, debriefing and the use of a psychosocial research group, also formed data sources. Forty interviews were conducted with 18 participants: eight took part in three interviews, six in two interviews and four in one interview. Analysis focused on the holistic ?case? of the individual temporally. In-depth, visual images were analysed from discussion in the narrative text. Through memoing, coding and comparison, themes were developed across all cases and a conceptual framework developed.
The conceptual framework illustrates the renegotiation of self over time through narrative. This was ?biographically? during young adult development and across ?cancer time?; through the core components of: the inner world, (psyche, emotion and coping); self as embodied; self as relating to others, and self as relating to place. Stories indicated that there was a constant inter- relationship over time between the renegotiation of identity and adaption of biography.
The focus in this paper is on ?the temporality of cancer? through the first year from diagnosis, and the juxtaposed process of managing biographical and developmental milestones. The importance of developing health care and research which enables narrative and the patient's voice has been highlighted. It emphasizes the need for professionals to ?be with? and ?walk alongside? through the intensity of a biographically and identity changing illness.
Background: Unintentional injuries are a leading cause of preventable death and a major cause of ill health and disability in children under five years of age. A health promotion mobile phone application, ?Grow up Safely?, was developed to support parents and carers in reducing unintentional injuries in this population of children.
Methods: A prototype of the mobile application was developed to deliver health education on unintentional injury prevention linked to stages of child development. In order to explore the usability of the app and refine its content, three focus groups were conducted with 15 mothers. Data were analysed using thematic analysis.
Results: The majority of participants reported previous use of health apps, mainly related to pregnancy, and recommended by health professionals. The app was considered user?friendly and easy to navigate. Participants in two focus groups found the app informative, offered new information and they would consider using it. Participants in the ?young mum's? group considered the advice to be ?common sense?, but found the language too complex. All participants commented that further development of push?out notifications and endorsement by a reputable source would increase their engagement with the app.
Conclusion: The ?Grow Up Safely? mobile phone app, aimed at reducing unintentional injuries in children under five, was supported by mothers as a health promotion app. They would consider downloading it, particularly if recommended by a health professional or endorsed by a reputable organisation. Further development is planned with push?out notifications and wider feasibility testing to engage targeted groups, such as young mothers, fathers and other carers.
Teenage and young adult cancer services in England are centralised in 13 principal treatment centres (TYA-PTC). These ?specialist services? are designed to support caregivers as well as young people.
Objectives: We sought to evaluate whether caregivers of young people with cancer had fewer unmet information and support needs if they had all/some care in a TYA-PTC.
Methods: Participants in a cohort study of young people with cancer nominated their main carer to complete the BRIGHTLIGHT Carer Questionnaire, completed six months after diagnosis. Comparisons were made according to where young people?s care was delivered: all, some or no care in a TYA-PTC. Principal component analysis reduced the questionnaire to five dimensions, which were used as dependent variables in subsequent regression analysis.
Results: Four hundred and seventy-six responses out of 514 returned questionnaires (92%) were included in the analysis. The majority of caregivers were white, middle aged, married/cohabiting mothers. Adjusted analysis indicated caregivers who had all/some care in a TYA-PTC had more satisfaction with support and also with services specifically provided for carers. Those who had some TYA-PTC care had greater satisfaction with information but less opportunity to be involved in decisions.
Conclusions: Caregivers of young people who had no TYA-PTC care have the most unmet information and support needs. Implications for Practice: Nurses outside of the TYA-PTC need to be supported by the TYA-PTC in providing information/support for caregivers. When a young person is receiving care in multiple hospitals nurses need optimise opportunities for caregivers to be involved in decision-making.
In this paper, we examine the use of creative methods for understanding the experience of young adults aged between 16 and 30 years over a year following a cancer diagnosis. Exploring the renegotiation of identity, the narrative, longitudinal research design of the study demonstrated the unfolding process of the narrative work between participants and researcher. We used a combination of visual, spoken and reflexive psychosocial approaches to understand emergent narratives, many of which do not always find symbolisation in language. Our methodological approach focused on the difficult and sometimes ?unspeakable? nature of the young adults? narratives, demonstrating the importance of different modes of communication in articulating complicated relations with uncertain futures. In this respect the links between narrative, social action and the imagining of possible futures are precarious. In this paper, we explore how untellable issues were explored, and the challenges of doing so.
Background: A reliable and valid instrument that accurately measures resilience is crucial
for the development of interventions to enhance the resilience of adolescents and promote
their positive mental well-being. However, there is a lack of adolescent resilience assessment
tools with good psychometric properties suitable for use with Hong Kong participants. This
study aimed to evaluate the psychometric properties of the traditional Chinese version of the
Methods: Between October 2017 and January 2018, a stratified random sample of 1816
Grade 7 (aged 11?15 years) students from all 18 districts of Hong Kong were invited to
participate in the study. Subjects were asked to respond to the traditional Chinese version of
the Resilience Scale-14, the Center for Epidemiologic Studies Depression Scale for children,
and Rosenberg?s Self-Esteem Scale. The psychometric properties, including the internal
consistency, content validity, convergent and discriminant validity, exploratory and
confirmatory factor analyses, and test?retest reliability of the Resilience Scale-14 were
Results: The translated scale demonstrated good internal consistency and test?retest
reliability, excellent content validity, and appropriate convergent and discriminant validity.
The results of the confirmatory factor analysis supported the two-factor structure of the
traditional Chinese version of the Resilience Scale-14.
Conclusions: Results suggest that the translated scale is a reliable and valid tool to assess the resilience of young Hong Kong Chinese adolescents. Healthcare professionals could use the newly translated scale to assess resilience levels among Hong Kong adolescents and develop
interventions that can help them combat mental health problems and lead healthier lives.
Importance: Evidence relating to the presenting symptoms of adolescent and young adults with
cancer can support the development of early diagnosis interventions.
Objective: To examine common presenting symptoms in adolescents and young adults aged 12?24
years subsequently diagnosed with cancer and potential variation in time to help-seeking by
Design: Cross-sectional analysis of the BRIGHTLIGHT cohort. Information on 17 pre-specified
presenting symptoms and the symptom-onset-to-help-seeking interval (patient interval) was
collected through structured face-to-face interviews and linked to national cancer registry data.
Setting: Multi-centre study across English hospitals.
Exposures: Self-reported presenting symptoms.
Main Outcomes and Measures: Frequencies of presenting symptoms and associated ?symptom
signatures? by cancer group. Proportion of patients with each presenting symptom whose patient
interval was greater than one month.
Results: The study population consisted of 803 adolescents and young adults with valid symptom
information (55% male, 63% aged 19?24 years, and 88% white ethnicity). The number of symptoms
varied by cancer group: for example, 86% of leukaemia patients presented with two or more
symptoms while only 31% of melanoma patients presented with multiple symptoms. In total, 352
unique symptom combinations were reported, with the 10 most frequent combinations accounting
for 38% of patients.
Lump or swelling was reported by over half the patients (prevalence (95% CI): 52% (49?56%)). Other
common presenting symptoms across all cancers were extreme tiredness (38% (35?42%)),
unexplained pain (35% (32?38%)), night sweats (24% (21?27%)), lymphadenopathy (24% (21?27%)),
and weight loss (24% (21?27%)). The relative frequencies of presenting symptoms also varied by
cancer group; some symptoms (such as lump/swelling) were highly prevalent across several cancer
groups (seen in >50% of patients diagnosed with lymphomas, germ cell tumours, carcinomas, bone
tumours, and soft-tissue sarcomas). Over one in four patients (27%) reported a patient interval
longer than one month: this varied from 6% (fits/seizures) to 43% (recurrent infections).
Conclusions and Relevance: Adolescents and young adults with cancer present with a broad
spectrum of symptoms, some of which are shared across cancer types. The findings point to
discordant presenting symptom prevalence estimates when information is obtained from patient
report versus health records.
Taylor Rachel M., Lobel Brian, Thompson Keisha, Onshila Adura, Croasdale Mark, Hall Nathaniel, Gibson Faith, Martins Ana, Wright David, Morgan Sue, Whelan Jeremy, Fern Lorna (2020) BRIGHTLIGHT researchers as ?dramaturgs?: creating There is a Light from complex research data, Research Involvement and Engagement
BRIGHTLIGHT is a national evaluation of cancer services for young people aged 13-24 years in England. It is a mixed methods study with six interlinked studies aiming to answer the question: do specialist cancer services for teenagers and young adults add value? http://www.brightlightstudy.com/
. Young people have been integral to study development and management, working as co-researchers, consultants and collaborators throughout. We aimed to share results in a way that was meaningful to young people, the public, and multidisciplinary professionals. This paper reports the development of ?There is a Light: BRIGHTLIGHT?, a theatrical interpretation of study results by young people, and offers insight into the impact on the cast, researchers and audiences.
The BRIGHTLIGHT team collaborated with Contact Young Company, a youth theatre group in Manchester. Twenty members of Contact Young Company and four young people with cancer worked together over an eight-week period during which BRIGHTLIGHT results were shared along with explanations of cancer, healthcare policy and models of care in interactive workshops. Through their interpretation, the cast developed the script for the performance. The impact of the process and performance on the cast was evaluated through video diaries. The research team completed reflective diaries and audiences completed a survey.
?There is a Light? contained five acts and lasted just over an hour. It played 11 performances in six cities in the United Kingdom, to approximately 1,377 people. After nine performances, a 30-minute talk-back between members of the cast, creative team, an expert healthcare professional, and the audience was conducted, which was attended by at least half the audience. Analysis of cast diaries identified six themes: initial anxieties; personal development; connections; cancer in young people; personal impact; interacting with professionals. The cast developed strong trusting relationships with the team. Professionals stated they felt part of the process rather than sitting on the periphery sharing results. Both professional and lay audiences described the performance as meaningful and understandable. Feedback was particularly positive from those who had experienced cancer themselves.
Using theatre to present research enabled BRIGHTLIGHT results to be accessible to a larger, more diverse audience.