1,721,150 research outputs found
Developing an Integrated Approach to the Care of Adolescents and Young Adults with Cancer
No full textSupporting parent treatment decision-making in relapsed and refractory neuroblastoma: co-design of a web-based intervention
No full textBackground: parents of children diagnosed with relapsed or refractory neuroblastoma become involved in making treatment decisions for their child due to an absence of no standard treatment protocol with no clear treatment endpoints. Relapsed and refractory neuroblastoma is a poor-prognosis childhood cancer with varying treatment options available depending on their child’s response to treatment. As a result, parents in partnership with their child’s medical team make repeated treatment decisions over time. Research has shown how this decision-making is influenced by uncertainty of their child’s response to treatments and overall outcome, and parents’ emotional and cognitive adjustments. Having time to research and gather information has also shown to enable and inform parent involvement and responsibility within decision-making. An intervention to support parents can help them navigate these complex decisions aiding their cognitive, emotional, and practical needs to enable and inform their decision-making.Methods: intervention development followed the Medical Research Council Framework for developing complex intervention co-designed with a parent stakeholder group. A review of the literature and analysis of parent interviews informed the intervention. A one-off clinical advisory group was formed to review draft content. Intervention user testing was completed using cognitive think-aloud interviews.Results: a web-based intervention was developed to support and facilitate parent treatment decision-making in relapsed and refractory neuroblastoma. Co-design was iterative with a combination of ten face-to-face and virtual workshops to discuss and develop the website content, design, and layout. User testing was completed with seven parents and findings informed changes which included reformatting web pages, reducing text paragraphs for easier reading, creating additional webpages for ease of navigation of information and providing parent quotes for authenticity. Recommendations for intervention development using co-design are provided based on our experiences of using this approach.Conclusions: this is a disease specific intervention developed to support and facilitate parent treatment decision-making in a specific poor-prognosis childhood cancer. Co-design was essential to ensure the intervention met the needs of this parent population. Further work following the MRC framework will test and evaluate its impact and effectiveness in clinical practice
The approach and application of analysing inductive and deductive datasets: a worked example using reflexive thematic analysis
No full textBraun and Clarke’s reflexive thematic analysis (reflexive TA) has gained wide attraction since its conception in 2006. Reflexive TA is methodologically flexible with researchers making decisions, which support their philosophical positionings. Qualitative research publications are often criticised for their lack of detail on the analytical processes undertaken to develop the analysis. This level of detail is important for novice researchers in learning ‘how to do’ analysis. This paper provides a worked example of the analytical approach using reflexive TA when exploring parent treatment decision-making in poor-prognosis childhood cancer. Qualitative analysis was undertaken of interview transcripts at different decision timepoints incorporating inductive and deductive approaches resulting in within and across case analysis. Discussion reflecting on the challenges, iterative processes and contextual decisions made on and towards the data is provided. The aim is to share an example of ‘how to’ approach reflexive TA to support novice researchers in their learning
Parent values and preferences underpinning treatment decision-making in poor-prognosis childhood cancer: a scoping review protocol
Full text linkIntroduction Parents of a child with cancer want to be involved in making treatment decisions for their child. Underpinning and informing these decisions are parents' individual values and preferences. Parents of a child who has a poor prognosis cancer and who subsequently dies can experience decisional regret. To support parents, and potentially reduce decisional regret, identifying the values and preferences of parents who are making these treatment decisions may enhance the support that can be provided by healthcare professionals. An increased understanding will support future work in this area and identify research gaps that could strengthen support strategies in clinical practice. The aim of this scoping review is to explore parent values and preferences underpinning treatment decision making when their child is receiving cancer-directed therapy for a poor prognosis cancer. Methods and analysis The Joanna Briggs Institute scoping review methodology will be followed. An initial database search of CINHAL and MEDLINE will be conducted to analyse the keywords using subject headings and Medical Subject Headings terms. Articles will be initially screened on title and abstract. The reference and citation lists of the full-text articles to be included will be searched using Web of Science. Articles will be independently reviewed by two reviewers and any discrepancies discussed with a third reviewer. Data extracted will be presented in tabular, diagrams and descriptive summaries. Ethics and dissemination Ethical approval is not required for this scoping review. This review will inform further research with parents to understand their values and preferences when making repeated treatment decisions when their child has a poor prognosis cancer. All outputs will be disseminated through peer-reviewed publications and conference presentations. This scoping review is registered on the Open Science Framework (https://osf.io/n7j9f).</p
Methodological issues when using the draw and write technique with children aged 6-12 years
No full textResearchers 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 create
Follow-up after cancer: a typology of young people's health care needs
No full textBackground: the paediatric oncology community is focused on providing appropriate care to survivors of childhood cancer, given that despite increases in survival rates it is estimated that 60% will have one or more problems related to their disease or treatment. Agreement and consistency in how follow-up for this group of young people should be designed and delivered has not yet been reached and rarely have young people been asked to contribute to this discussion.Methodology: the study aimed to find out what young people who are receiving long-term follow-up for childhood cancer would like from their follow-up service. It aimed to illuminate the dimensions of care valued by young people as well as make explicit to professionals health care needs that must be met to provide optimum care into their adult life. The emphasis was on qualitative, participatory methods using reflexive and responsive approaches to give primacy to the voice of participants. Data were generated through a series of workshops, interviews and questionnaires.Findings: forty young people (12 male: 30% and 28 female: 70%), participated in the study. Preliminary analysis yielded a descriptive typology that could serve as a basis for classifying and clarifying health care needs: defined as what the young people in this study wanted from a follow-up service. Five categories of health care need were identified: (i) need for a positive relationship with health care professionals; (ii) need for information; (iii) need for communication; (iv) need for parents to be supported; (v) need for health care professionals to have appropriate knowledge.Conclusions and relevance to practice: young people in this study were clear about the structure and process of a service that would meet their needs. Assembling data into a typology of health care need presents those delivering and commissioning services a tangible indicator of outcome that can be confidently described as what young people want from any current or future model of follow-up servic
A review of long-term follow up for survivors of childhood cancer.
No full textThough cure from cancer is not guaranteed, children’s chances of survival have increased significantly. As a result the paediatric oncology community is focused on providing appropriate follow-up care to an increasing number of young cancer survivors. How this care should be designed and delivered however remains the centre of ongoing discussion and was the focus of this review. The aims of the review were to (1) gain an understanding of current follow-up practices from studies involving health care professionals, (2) identify and evaluate studies presenting views of survivors, (3) examine commentaries on both the current and future design of long-term follow-up services and (4) evaluate existing follow-up guidelines.Empirical research, commentary papers and published guidelines were reviewed. Twenty-eight papers and five guidelines were analysed. Empirical papers were examined in relation to sample, design, findings and limitations. Commentary papers were assessed in relation to key issues about follow-up care. Guidelines were assessed on how far they were evidence-based, peer-reviewed and involved users in their development. Varying models of care were illustrated, and were dependent upon personnel and centre orientation. Variability in the level and degree to which long-term survivors were followed up was also reported. Inconsistencies in practice were noted. Nonetheless requirements for an effective service were highlighted in the majority of publications, these included communication and information. Although young people and professionals had a shared view on many aspects of follow-up care, these preferences were not consistently mirrored in service provisio
'Heavy to carry': a survey of parent/caregiver and healthcare professionals' perceptions of cancer-related fatigue in children and young people.
No full textCancer-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 famil
Children and young people's experiences of cancer care: A qualitative research study using participatory methods
No full textBackground: 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 people.<br/
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