Adolescents and young adults (AYAs) with cancer are a distinct group whose needs have been poorly addressed within health care systems. This imbalance is being addressed in some countries, and this ...growing specialty is now receiving the recognition it requires in order to develop further. This article discusses some of the psychosocial issues of AYAs and, with reference to the phrase of sex, drugs, and rock and roll, highlights the various rites of passage that young people experience. It also discusses how services and professionals can work alongside AYAs, enabling them to feel a part of the process by providing age-appropriate environment and expertise.
IntroductionThe process of transitioning young people from children’s or adolescents’ health services into adults’ services is a crucial time in the lives and health of young people and has been ...reported to be disjointed rather than a process of preparation in which they are involved. Such transitions not only fail to meet the needs of young people and families at this time of significant change, but they may also result in a deterioration in health, or disengagement with services, which can have deleterious long-term consequences. Despite the wealth of literature on this topic, there has yet to be a focus on what works for whom, in what circumstances, how and why, in relation to all young people transitioning from children’s into adults’ services, which this realist synthesis aims to address.Methods and analysisThis realist synthesis will be undertaken in six stages: (1) the scope of the review will be defined; (2) initial programme theories (IPTs) developed; (3) evidence searched; (4) selection and appraisal; (5) data extraction and synthesis; and (6) finally, refine/confirm programme theory. A theory-driven, iterative approach using the ‘On Your Own Feet Ahead’ theoretical framework, will be combined with an evidence search including a review of national transition policy documents, supplemented by citation tracking, snowballing and stakeholder feedback to develop IPTs. Searches of EMBASE, EMCARE, Medline, CINAHL, Cochrane Library, Web of Science, Scopus, APA PsycINFO and AMED will be conducted from 2014 to present, supplemented with grey literature, free-text searching (title, abstract and keywords) and citation tracking. Data selection will be based on relevance and rigour and extracted and synthesised iteratively with the aim of identifying and exploring causal links between contexts, mechanisms and outcomes. Results will be reported according to the Realist And Meta-narrative Evidence Syntheses: Evolving Standards Quality and Publication Standards.Ethics and disseminationThis realist synthesis forms part of the National Transition Evaluation Study, which has received ethical and regulatory approval (IRAS ID: 313576). Results will be disseminated through peer-review publication, conference presentations and working with healthcare organisations, stakeholder groups and charities.Trial registration numberNCT05867745.PROSPERO registration numberCRD42023388985.
The end of active treatment is a period of high stress for young people with cancer, but limited literature exists about their information and support needs during this phase. This study aimed to ...understand the needs of young people with cancer, how these needs are currently being met, and how best to provide information and support at the end of active treatment.
This was a multi-stage, mixed methods study exploring the end of treatment experience from the perspectives of young people, and the healthcare professionals caring for them. Semi-structured interviews were undertaken with healthcare professionals, which informed a survey administered nationally. Subsequently, semi-structured interviews were conducted with young people. These combined results informed a co-design workshop to develop recommendations.
Telephone interviews were conducted with 12 healthcare professionals and 49 completed the online survey. A total of 11 young people aged 19-26 years (female = 8; 73%) were interviewed. The stakeholder workshop was attended by both healthcare professionals (n = 8) and young people (n = 3). At the end of treatment young people experience numerous ongoing physical issues including pain, fatigue and insomnia; in addition to a range of psychosocial and emotional issues including anxiety, fear of recurrence and isolation. The top three priorities for end of treatment care were: earlier provision and preparation around on-going impact of cancer and cancer treatment; standardised and continued follow-up of young people's emotional well-being; and development of more information and resources specific to young people.
The access and availability of appropriate information and sources of support at the end of treatment is variable and inequitable. Young people's needs would be more effectively met by timely, structured and accessible information, and support provision at the end of treatment to both prepare and enable adaptation across their transition to living with and beyond cancer. This will require both organisational and practical adjustments in care delivery, in addition to a renewed and updated understanding of what the 'end of treatment' transition process means.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
ObjectivesTo 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.DesignJames Lind Alliance Priority Setting Partnership.SettingUK health service and community.MethodsA 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.ParticipantsYoung people aged 13–24 years with a current or previous cancer diagnosis, their families, friends, partners and professionals who work with this population.ResultsTwo 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.ConclusionsWe 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.
Sex, Gender and the Sacred Joanna de Groot, Sue Morgan / Joanna de Groot, Sue Morgan
2014, 2014-04-03
eBook
Sex, Gender and the Sacred presents a multi-faith, multi-disciplinary collection of essays that explore the interlocking narratives of religion and gender encompassing 4, 000 years of history. * ...Contains readings relating to sex and religion that encompass 4, 000 years of gender history * Features new research in religion and gender across diverse cultures, periods, and religious traditions * Presents multi-faith and multi-disciplinary perspectives with significant comparative potential * Offers original theories and concepts relating to gender, religion, and sexuality * Includes innovative interpretations of the connections between visual, verbal, and material aspects of particular religious traditions
The biographical disruption that occurs in adolescents and young adults following a cancer diagnosis can affect various important psychosocial domains including relationships with family and friends, ...sexual development, vocational and educational trajectories, and physical and emotional wellbeing. While there is evidence of the physical impact of cancer during this period, less is known about the impact on emotional wellbeing and especially on the barriers for young people accessing help and support. We aimed to obtain a more in-depth understanding of young people's experiences of their diagnosis, treatment, psychological impact, and range of resources they could or wanted to access for their mental health. We conducted an in-depth qualitative study using semi-structured interviews with 43 young people who had developed cancer aged 16 to 39 years and were either within 6 months of diagnosis or 3-5 years after treatment had ended. Framework analysis identified three themes: the emotional impact of cancer (expressed through anxiety, anger, and fear of recurrence); personal barriers to support through avoidance; and support to improve mental health through mental health services or adolescent and young adult treatment teams. We showed the barriers young people have to access care, particularly participant avoidance of support. Interrupting this process to better support young people and provide them with flexible, adaptable, consistent, long-term psychological support has the potential to improve their quality of life and wellbeing.
Objective
We conducted a UK‐wide survey to identify the top 10 research questions for young people's cancer. We conducted secondary analysis of questions submitted, which were ‘out‐of‐scope’ of the ...original survey aim. We sought to disseminate these questions, to inform practice, policy and the development of potential interventions to support young people with cancer.
Design
James Lind Alliance Priority Setting Partnership.
Participants
Young people aged 13‐24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population.
Methods
Eight hundred and fifty‐five potential research questions were submitted, and 326 were classified as ‘out‐of‐scope’. These questions, along with 49 ‘free‐text’ comments, were analysed using thematic analysis.
Results
The 375 out‐of‐scope questions and comments were submitted by: 68 young people, 81 family members/partners/friends and 42 professionals. Ten overarching themes were identified: diagnostic experience; communication; coordination of care; information needs and lack of information; service provision; long‐term effects and aftercare support; family support; financial impact; end‐of life care; and research methods and current research.
Conclusions
The need to tailor services, information and communication is a striking thread evidenced across the ‘out‐of‐scope’ questions. Gaps in information highlight implications for practice in revisiting information needs throughout the cancer trajectory. We must advocate for specialist care for young people and promote the research priorities and these findings to funding bodies, charities, young people and health and social care policymakers, in order to generate an evidence base to inform effective interventions across the cancer trajectory and improve outcomes.
Patient/public contributions
Patients and carers were equal stakeholders throughout.
To gather the perspectives of Teenagers and Young Adults (TYA) with cancer across Europe on the care they received and research priorities for TYA services.
A questionnaire was designed by TYA ...oncology specialists in the United Kingdom and translated into 11 other European languages. It was disseminated to TYAs in various European countries with the help of collaborators in the European Network for Cancer in Children and Adolescents (ENCCA). Free text responses were analyzed using a thematic approach.
301 participants representing 25 countries were entered into the analysis. Only 9% of the sample had experience of a ward solely for the use of TYAs. Two thirds of participants agreed with the need for TYA-specific services. Participants reported that important aspects of TYA care included access to psychological care, youth workers and physiotherapists, higher levels of staffing, and healthcare workers who understand the needs of TYAs and communicate effectively. The most frequently endorsed areas for future research were "monitoring after treatment," "communication between professionals and young people," "research about cancer," "fertility preservation," and "back to work/school."
European collaboration between TYA and professionals in delivering this project has been feasible. This study contributes to developing a healthcare culture that values the perspectives of service users. It has provided an insight into what TYAs perceive as important aspects of their care, how they think TYA care can be improved, and what they consider to be important areas for research.
The late‐Victorian social purity movement heralded a new phase in the history of moral regulation, generating significant levels of Anglican and Nonconformist support for male chastity and the ...elimination of the sexual double standard. Historians have so far highlighted the more repressive aspects of these campaigns such as their willingness to use criminal legislation and censorship to elevate standards of public morality. This article rehabilitates the discourse and activity of churchwomen — not least Ellice Hopkins — who were prominent campaigners for social purity. Women purity workers exerted enormous pressure upon the professional hierarchies of church and chapel, actively reworking Christian readings of the body so as to bring the moral influence of the churches to bear upon public opinion. In so doing they brought about a significant transformation in clerical attitudes that regarded discussions of sex as beyond the boundaries of civilized discourse and led in the promotion of a regulatory, but nonetheless highly public, religious discourse on sexuality.
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