"It changes everything": Understanding how people experience the impact of living with a lower-grade glioma.

Background: Quantitative studies show people living with a lower-grade glioma (LGG) often report low health-related quality of life. However, it is unclear how this impact is experienced; resulting supportive care needs are also poorly understood. We explored how people experience the impact of living long-term with an LGG, to help identify potential supportive care needs. Methods: We conducted semi-structured interviews with a diverse group of people with LGG (n = 28) across the United Kingdom, who had completed primary treatment (male n = 16, female n = 12, mean age 54.6 years, mean time since diagnosis 8.7 years). Interviews were transcribed and inductive thematic analysis was conducted. Results: Four themes relating to the impact experiences of people with LGG were generated: "Emotional response to the diagnosis," "Living with the 'What ifs'," "Changing relationships," and "Faltering independence." These reflect participants' experiences with symptoms (eg, fatigue, seizures) and impairments (eg, motor dysfunction, cognitive deficits), and how these, in turn, drive impacts on daily living (including on work, relationships, social activities, and transport). Participants spoke about their experiences with profound emotion throughout. Conclusions: People with LGG can experience wide-ranging everyday impacts and may have extensive supportive care needs. This study highlights how this impact is experienced and what it means to people with LGG. Best practice suggestions for conducting comprehensive needs assessments tailored to those with LGG, and the development of personalized plans to meet those needs, would be a critical step to ensure that people with LGG are best supported in living with their condition.

Understanding supported self-management for people living with a lower-grade glioma: Implementation considerations through the lens of normalisation process theory.

BACKGROUND: Supported self-management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self-management support (SMS) for people living with a lower-grade glioma (LGG)-who often have complex support needs-are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG. METHODS: We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives. RESULTS: We generated supporting evidence for all four NPT constructs and related subconstructs, namely: 'Coherence', 'Cognitive participation', 'Collective action' and 'Reflexive monitoring'. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP-support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help-seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation. CONCLUSIONS: This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self-management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG. PATIENT OR PUBLIC CONTRIBUTION: People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings.

Barriers and facilitators to self-management in people living with a lower-grade glioma.

PURPOSE: Self-management can have clinical and quality-of-life benefits. However, people with lower-grade gliomas (LGG) may face chronic tumour- and/or treatment-related symptoms and impairments (e.g. cognitive deficits, seizures), which could influence their ability to self-manage. Our study aimed to identify and understand the barriers and facilitators to self-management in people with LGG. METHODS: We conducted semi-structured interviews with 28 people with LGG across the United Kingdom, who had completed primary treatment. Sixteen participants were male, mean age was 50.4 years, and mean time since diagnosis was 8.7 years. Interviews were audio-recorded and transcribed. Following inductive open coding, we deductively mapped codes to Schulman-Green et al.'s framework of factors influencing self-management, developed in chronic illness. RESULTS: Data suggested extensive support for all five framework categories ('Personal/lifestyle characteristics', 'Health status', 'Resources', 'Environmental characteristics', 'Healthcare system'), encompassing all 18 factors influencing self-management. How people with LGG experience many of these factors appears somewhat distinct from other cancers; participants described multiple, often co-occurring, challenges, primarily with knowledge and acceptance of their incurable condition, the impact of seizures and cognitive deficits, transport difficulties, and access to (in)formal support. Several factors were on a continuum, for example, sufficient knowledge was a facilitator, whereas lack thereof, was a barrier to self-management. CONCLUSIONS: People with LGG described distinctive experiences with wide-ranging factors influencing their ability to self-manage. IMPLICATIONS FOR CANCER SURVIVORS: These findings will improve awareness of the potential challenges faced by people with LGG around self-management and inform development of self-management interventions for this population.

Health literacy, eHealth literacy and their association with burden, distress, and self-efficacy among cancer caregivers.

Purpose: Health literacy skills are vital for cancer caregivers in helping cancer survivors to navigate their diagnosis, treatment, and recovery but little is known. This study explored health literacy and eHealth literacy among cancer caregivers and the relationship between health literacy/eHealth literacy and potential associated factors. Methods: Informal caregivers who had cared for an individual with cancer completed a survey which collected demographic data and measured caregiver health literacy, eHealth literacy, self-efficacy, burden, and distress. Results: Seven percent of caregivers had inadequate health literacy. Caregivers scored lowest on health literacy domains related to caregiver social support, information seeking and understanding care recipient preferences. eHealth literacy was associated with self-efficacy and burden while, different health literacy domains were associated with burden ('Understanding care recipient needs and preferences'), self-efficacy ('Cancer-related communication with the care recipient' and 'Understanding care recipients needs and preferences') and distress ('Proactivity and determination to seek information', 'Understanding care recipient needs and preferences', 'Understanding the healthcare system'). Conclusion: Findings highlight key areas of need regarding cancer caregiver health literacy which future research can target. Given the observed relationship between aspects of health literacy and burden, distress and self-efficacy future work could be carried out on how to alleviate high levels of burden and distress and how to enhance self-efficacy among cancer caregivers by addressing health literacy skills. Implications for cancer survivors: Findings from this study will inform the development of health literacy interventions to support caregivers to build their health literacy skills and enable this group to better support cancer survivors as a result.

'A Constant Black Cloud': The Emotional Impact of Informal Caregiving for Someone With a Lower-Grade Glioma.

Those closest to people with lower-grade gliomas (LGGs) often assume the role of informal caregiver (IC). The additional responsibilities mean ICs of people with cancer can experience adverse impacts on their own lives. We explored the emotional impact of informal caregiving for people with LGGs. This was a descriptive qualitative study within the multi-method Ways Ahead project. We conducted semi-structured interviews with individuals from the United Kingdom, who currently, or in the past 5 years, informally cared for someone with an LGG. Interviews encompassed experiences of emotional impact as a consequence of caregiving for someone with an LGG. Inductive thematic analysis was undertaken. We interviewed 19 ICs (mean age 54.6 years; 14 females, 5 males). Participants reported substantial emotional impact. Four themes and associated subthemes were generated: Emotional responses to the illness (e.g. feeling helpless), Emotional responses to the unknown (e.g. anxiety about future uncertainty), Emotional consequences of care recipient changes (e.g. challenges of changed relationship dynamics), and Emotional weight of the responsibility (e.g. feeling burnout). Emotional impact in one area often exacerbated impact in another (e.g. future uncertainty impacted feelings of helplessness). Participants detailed the factors that helped them manage the emotional impact (e.g. being resilient). ICs of people with LGGs can experience wide-ranging emotional responses to and impacts of the illness, uncertain prognosis, care recipient changes, and the toll of caregiving. Adjustment and resilience are key protective factors, though further consideration of ways to identify and fulfil the emotional support needs of ICs of people with LGGs is required.

Feeling valued: the interplay of assistive technology and identity.

PURPOSE: The aim of this study was to explore the impact of AT in identity for students with disabilities in higher education and if/how this changes over time. METHODS: Using a longitudinal qualitative research design, semi-structured interviews were conducted with students with disabilities (n = 13) in higher education in Ireland on two occasions during an academic year. A trajectory approach to longitudinal analysis was employed. This involved the use of matrices and identification of a through line for the study, which connects participant change over time. RESULTS: The through line identified was feeling valued, which was central in the negotiation of identity over time across three themes: feelings of autonomy and competence; claiming disability; and feeling like you belong as a student. AT impacted experiences across the three themes which subsequently promoted or undermined students' sense of value. Reciprocally, feeling valued influenced use and perceptions of AT. Factors specific to a higher education context were also identified which influenced meanings attached to AT over time. CONCLUSION: Creating an environment where students feel valued is key in promoting use of and positive perceptions of AT. This should form an integral part of AT and disability policy in higher education.

Assistive technology (AT) use can have significant implications for one's identityAT indirectly impacts on students with disabilities' sense of value through its influence on three areas of identity change/continuity; feelings of autonomy and competence, claiming disability and feeling like you belongFeeling valued was central to the negotiation of identity over time for students with disabilities in higher educationCreating an environment where students feel valued is integral to supporting students in their pursuit of a positive sense of identity and key in promoting use of and positive perceptions towards AT. This should form a central part of AT and disability policy in higher education.

Experiences of work for people living with a grade 2/3 oligodendroglioma: a qualitative analysis within the Ways Ahead study.

OBJECTIVES: This study aimed to explore the work experiences of people living with an oligodendroglioma. DESIGN: This was a descriptive qualitative study. One-time semi-structured interviews exploring supportive care needs were conducted; work was discussed at various points throughout each interview. An inductive thematic analysis was undertaken. SETTING: Participants were recruited across the UK through four National Health Service hospitals and the Brain Tumour Charity research involvement networks. PARTICIPANTS: 19 people with grade 2 or 3 oligodendroglioma (mean age 52 years; male n=11). At diagnosis, 16 participants were working, 2 studying and 1 retired. At the interview (mean time since diagnosis 9.6 years; range 1-18 years), seven participants were working, eight retired (four on medical grounds) and four unable to work due to illness. RESULTS: Seven themes were constructed: (1) physical and cognitive limitations; (2) work ability and productivity; (3) work accommodations; (4) changing roles; (5) attitudes of clients and coworkers; (6) feelings and ambitions; and (7) financial implications. Fatigue, seizures and cognitive deficits influenced work ability. A stressful work environment could exacerbate symptoms. Changes in job roles and work environment were often required. Employer and coworker support were integral to positive experiences. Work changes could result in financial stress and strain. CONCLUSIONS: This study has highlighted, for the first time, influences on work experiences in this understudied population. These findings have implications for clinicians and employers, when considering the importance of work in rehabilitation for people with oligodendrogliomas, and the individually assessed adjustments required to accommodate them, should employment be desired.

Body image and cancer-related lymphoedema: A systematic review.

OBJECTIVE: Cancer-related lymphoedema is a common side effect of cancer, affecting 24%-49% of people with cancer. Body image contributes to the well-being of individuals with this condition. This systematic review aimed to explore, for the first time, the state of the science concerning body image in cancer-related lymphoedema, including how body image is measured and variables associated with body image concerns. METHODS: Six databases were systematically searched for peer-reviewed articles describing empirical quantitative studies where body image was measured with a reliable and valid measurement tool in adults with cancer-related lymphoedema. RESULTS: Nine studies with 977 participants were included. The studies involved individuals who had experienced breast, head and neck, melanoma, and urogenital cancers and developed lymphoedema. There was considerable heterogeneity in body image measures used, precluding meta-analysis. The following variables were associated with increased body image concern: higher body integrity beliefs, experience of physical changes (e.g. pain) and differences in sensation and function, including changes in appearance related thoughts, feelings and emotions. Several studies described behavioural and psychological interventions which positively impacted body image outcomes in individuals with lymphoedema relating to specific cancers. CONCLUSION: Regular screening for body image concerns could encourage more positive body image awareness in individuals with cancer-related lymphoedema and lessen some of its associated negative consequences. Future longitudinal and individual differences research in this area is important to inform intervention development. There is also need for a more standardised approach to the study and measurement of body image in people with cancer-related lymphoedema.

Examining the Utility of Stress-, Motivation-, and Commitment-Based Perspectives of Athlete Burnout.

Burnout, characterized by exhaustion, reduced accomplishment, and devaluation, can have substantial negative implications for athletes. Notably, researchers continue to examine burnout from multiple perspectives, commonly focusing on stress-, motivation-, or commitment-related factors, with limited efforts to consider these perspectives together. In contrast, this study aimed to assess the utility of these multiple perspectives and the key predictors of burnout in the same athlete sample. Data on burnout, stress, motivation, motivational climate, and sport commitment were gathered from 370 Gaelic games athletes. Separate structural equation models incorporating stress, motivation, and commitment factors as predictors of burnout dimensions were assessed. All models showed adequate fit. However, differences in effect size suggest that stress is more strongly associated with exhaustion, while commitment and motivation showed a stronger relationship with reduced accomplishment and devaluation. Evidence of significant predictors across perspectives also supports an integrated approach and may inform integration efforts and targeted intervention strategies.

Identifying and understanding how people living with a lower-grade glioma engage in self-management.

PURPOSE: Lower-grade gliomas (LGG) are mostly diagnosed in working-aged adults and rarely cured. LGG patients may face chronic impairments (e.g. fatigue, cognitive deficits). Self-management can improve clinical and psychosocial outcomes, yet how LGG patients self-manage the consequences of their tumour and its treatment is not fully understood. This study, therefore, aimed to identify and understand how LGG patients engage in the self-management of their condition. METHODS: A diverse group of 28 LGG patients (age range 22-69 years; male n = 16, female n = 12; mean time since diagnosis = 8.7 years) who had completed primary treatment, were recruited from across the United Kingdom. Semi-structured interviews were conducted. Informed by a self-management strategy framework developed in cancer, directed content analysis identified and categorised self-management types and strategies used by patients. RESULTS: Overall, 20 self-management strategy types, comprising 123 self-management strategies were reported; each participant detailed extensive engagement in self-management. The most used strategy types were 'using support' (n = 28), 'creating a healthy environment' (n = 28), 'meaning making' (n = 27), and 'self-monitoring' (n = 27). The most used strategies were 'accepting the tumour and its consequences' (n = 26), 'receiving support from friends (n = 24) and family' (n = 24), and 'reinterpreting negative consequences' (n = 24). CONCLUSIONS: This study provides a comprehensive understanding of the strategies used by LGG patients to self-manage their health and wellbeing, with a diverse, and substantial number of self-management strategies reported. IMPLICATIONS FOR CANCER SURVIVORS: The findings will inform the development of a supported self-management intervention for LGG patients, which will be novel for this patient group.

Relationship between parent-adolescent communication and parent involvement in adolescent Type 1 diabetes management, parent/family wellbeing and glycaemic control.

OBJECTIVES: This study investigated the relationship between parent-reported degree of openness and extent of problems in parent-adolescent communication and parent involvement in adolescent Type 1 diabetes management, parent and family wellbeing and adolescent glycaemic control. METHODS: A cross-sectional quantitative survey was conducted. Parents completed measures of parent-adolescent communication, parent monitoring of diabetes care, diabetes family responsibility, parent knowledge of diabetes care, parent activation, parent diabetes distress, and diabetes family conflict. RESULTS: In total, 146 parents/guardians (121 mothers, mean age 46.56 years, SD 5.18) of adolescents aged 11-17 years (mean age 13.9 years, SD 1.81) with Type 1 diabetes completed the survey. Open parent-adolescent communication was significantly correlated to adolescents' voluntarily disclosing diabetes-specific information to their parents more frequently, increased parental knowledge of their adolescent's diabetes care completion, parents feeling more capable and willing to take action in relation to their adolescent's diabetes health, lower levels of diabetes-related parental distress, less diabetes-specific family conflict, and optimal glycaemic control. DISCUSSION: Parent-adolescent communication has an important role to play in Type 1 diabetes healthcare management and psychosocial wellbeing during adolescence. Optimising open parent-adolescent communication represents a potentially useful target for interventional research and should be considered by healthcare professionals during healthcare encounters.

Social support and childhood cancer survivors: A systematic review (2006-2022).

OBJECTIVE: Research has indicated that social support may play a protective role in the face of stress and help children and adolescents cope with the demands and challenges they face on a daily basis during their cancer journey. However, social support tends to reduce over time as survivors overcome their illness despite its ongoing importance even years after treatment has finished. The current review aimed to systematically examine existing evidence on social support in child and adolescent cancer survivors. METHODS: Five databases (PsychINFO, CINAHL, EMBASE, PubMed and Web of Science) were searched systematically to identify quantitative studies which explored social support from the perspective of child and adolescent cancer survivors aged 18 years or younger. RESULTS: A total of 10 studies met the eligibility criteria for inclusion. Findings from the review indicate that family and friends, particularly parents, are important sources of social support for survivors. Social support was positively related to posttraumatic growth, school re-entry and physical activity, and negatively related to psychological stress, depression, anxiety and stress. Furthermore, findings relating to gender, age and group differences were mixed. A number of methodological concerns were identified in the reviewed studies including small sample sizes, as well as a lack of consistency in the measurement of social support. CONCLUSIONS: Future studies of social support for child and adolescent cancer survivors need to address these shortcomings to help inform care and support interventions promoting social support in survivors.

The role of defensive information processing in population-based colorectal cancer screening uptake.

BACKGROUND: Internationally, colorectal cancer screening participation remains low despite the availability of home-based testing and numerous interventions to increase uptake. To be effective, interventions should be based on an understanding of what influences individuals' decisions about screening participation. This study investigates the association of defensive information processing (DIP) with fecal immunochemical test (FIT)-based colorectal cancer screening uptake. METHODS: Regression modeling of data from a cross-sectional survey within a population-based FIT screening program was conducted. The survey included the seven subdomains of the McQueen DIP measure. The primary outcome variable was the uptake status (screening user or nonuser). Multivariable logistic regression was used to estimate the odds ratio (OR) for screening nonuse by DIP (sub)domain score, with adjustments made for sociodemographic and behavioral factors associated with uptake. RESULTS: Higher scores (equating to greater defensiveness) on all DIP domains were significantly associated with lower uptake in the model adjusted for sociodemographic factors. In the model with additional adjustments for behavioral factors, the suppression subdomains of "deny immediacy to be tested" (OR, 0.53; 95% confidence interval [CI], 0.43-0.65; p < .001) and "self-exemption" (OR, 0.80; 95% CI, 0.68-0.96; p < .001) independently predicted nonuse of FIT-based screening. CONCLUSIONS: This is the first study outside the United States that has identified DIP as a barrier to colorectal cancer screening uptake, and it is the first focused specifically on FIT-based screening. The findings suggest that two suppression barriers, namely denying the immediacy to be tested and self-exempting oneself from screening, may be promising targets for future interventions to improve uptake.

Adolescent perspectives on negotiating self-management responsibilities for type 1 diabetes with their parents.

OBJECTIVE: The overall purpose of this study was to explore adolescent perspectives on communicating about self-management of type 1 diabetes (T1D) and negotiating responsibilities for self-management with parents. METHODS: Semi-structured interviews were conducted with 28 adolescents aged 11-17 years living with T1D. Interviews were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: Two themes and five subthemes were identified. The first theme, 'changing levels of involvement in self-management' describes the division of responsibility for self-management within the family and adolescents collaborating and sharing responsibilities with parents for self-management. The second theme, 'talking about self-management with parents' describes changes in patterns of parent-adolescent communication about T1D over time, adolescents' seeking parental feedback and advice and the factors that contribute to the promotion of self-management communication between adolescents and parents. CONCLUSION: This study identified that how adolescents perceive communication with their parents contributes to negotiation of responsibilities for self-management during adolescence. The findings provide a nuanced understanding of adolescent perspectives on communication with parents about T1D self-management and how parent-adolescent communication can be framed in ways that promote positive adolescent engagement with T1D self-management. PRACTICE IMPLICATIONS: Targeting parent-adolescent communication strategies may result in more optimal sharing of responsibilities and improved self-management.

Assistive technologies, educational engagement and psychosocial outcomes among students with disabilities in higher education.

PURPOSE: Increasing numbers of students with disabilities are accessing higher education each year, yet little is known about their assistive technology (AT) needs and its influence on relevant outcomes. The aim of this study was to examine met/unmet AT needs on educational engagement, academic self-efficacy and well-being and the impact of AT use in the areas of competence, adaptability and self-esteem for students with disabilities in higher education in Ireland. METHODS: One hundred and eleven students with disabilities completed a cross-sectional online survey comprising the College Learning Effectiveness Inventory, the Student Course Engagement Questionnaire, the Self-Efficacy for Learning Form Abridged, the Psychosocial Impact of Assistive Devices Scale, and the Warwick-Edinburgh Mental Well-Being Scale. RESULTS: AT use was found to have a positive psychosocial impact in the areas of competence, adaptability and self-esteem. Those whose AT needs were fully met scored significantly higher on academic self-efficacy, well-being, and on 4 of the 10 educational engagement subscales compared to those who had unmet AT needs. Met/unmet AT needs were not predictive of educational engagement. CONCLUSION: These findings highlight the importance of AT from both educational engagement and psychosocial perspectives for students with a wide variety of disability diagnoses. The wide-reaching benefits of AT must be considered by governmental departments when making funding allocations to disability services within higher education institutions. Implications for rehabilitationStudents with disabilities can face many additional challenges within the higher education environment.Findings from this research show that access to appropriate assistive technology can support students' educational engagement, increase well-being and academic self-efficacy and have a positive impact in the areas of competence, adaptability and self-esteem.Disability and Assistive Technology Officers in higher education should be cognizant of both the educational and psychological benefits of assistive technology across diverse students with various disability diagnoses.Policy makers should consider the wide-reaching benefits of assistive technology when making funding allocations to higher education institutions.

Health-related quality of life in adults with low-grade gliomas: a systematic review.

PURPOSE: Low-grade glioma (LGG) patients may face health-related quality-of-life (HRQoL) impairments, due to the tumour, treatment and associated side-effects and prospects of progression. We systematically identified quantitative studies assessing HRQoL in adult LGG patients, for: aspects of HRQoL impacted; comparisons with non-cancer controls (NCC) and other groups; temporal trends; and factors associated with HRQoL. METHODS: MEDLINE, CINAHL, Embase, PubMed, and PsycINFO were systematically searched from inception to 14th September 2021. Following independent screening of titles and abstracts and full-texts, population and study characteristics, and HRQoL findings were abstracted from eligible papers, and quality appraised. Narrative synthesis was conducted. RESULTS: Twenty-nine papers reporting 22 studies (cross-sectional, n = 13; longitudinal, n = 9) were identified. Papers were largely good quality, though many excluded patients with cognitive and communication impairments. Comparators included high-grade gliomas (HGG) (n = 7); NCCs (n = 6) and other patient groups (n = 3). Nineteen factors, primarily treatment (n = 8), were examined for association with HRQoL. There was substantial heterogeneity in HRQoL instruments used, factors and aspects of HRQoL assessed and measurement timepoints. HRQoL, primarily cognitive functioning and fatigue, in adult LGG patients is poor, and worse than in NCCs, though better than in HGG patients. Over time, HRQoL remained low, but stable. Epilepsy/seizure burden was most consistently associated with worse HRQoL. CONCLUSION: LGG patients experience wide-ranging HRQoL impairments. HRQoL in those with cognitive and communication impairments requires further investigation. These findings may help clinicians recognise current supportive care needs and inform types and timings of support needed, as well as inform future interventions.

Characteristics and Components of Self-Management Interventions for Improving Quality of Life in Cancer Survivors: A Systematic Review.

Self-management can improve clinical and psychosocial outcomes in cancer survivors. Which intervention characteristics and components are beneficial is unclear, hindering implementation into practice. We systematically searched six databases from inception to 17 November 2021 for studies evaluating self-management interventions for adult cancer survivors post-treatment. Independent reviewers screened for eligibility. Data extraction included population and study characteristics, intervention characteristics (TIDieR) and components (PRISMS), (associations with) quality of life (QoL), self-efficacy, and economic outcomes. Study quality was appraised, and narrative synthesis was conducted. We identified 53 papers reporting 32 interventions. Studies had varying quality. They were most often randomised controlled trials (n = 20), targeted at survivors of breast (n = 10), prostate (n = 7), or mixed cancers (n = 11). Intervention characteristics (e.g., provider, location) varied considerably. On average, five (range 1-10) self-management components were delivered, mostly "Information about condition and its management" (n = 26). Twenty-two studies reported significant QoL improvements (6 also reported significant self-efficacy improvements); these were associated most consistently with combined individual and group delivery. Economic evaluations were limited and inconclusive. Self-management interventions showed promise for improving QoL, but study quality was variable, with substantial heterogeneity in intervention characteristics and components. By identifying what to adapt from existing interventions, these findings can inform development and implementation of self-management interventions in cancer.

Parents' perspectives of factors affecting parent-adolescent communication about type 1 diabetes and negotiation of self-management responsibilities.

Adolescence is an important time in which young people take on type 1 diabetes (T1D) self-management responsibility. Parents are key facilitators of this process. Little is known about parents' experiences of communicating with their children about T1D during adolescence. Semi-structured interviews were conducted with 32 parents (24 mothers and 8 fathers) of adolescents (11-17 years) living with T1D to explore how parents communicate about T1D and self-management with their adolescent children. Parents were recruited through two national child and adolescent diabetes and endocrine clinics and online advertisement through a national diabetes advocacy organisation. Interviews were transcribed verbatim and thematically analysed. Six themes were identified: parent factors, quality of the parent-adolescent relationship, communication strategies, adolescent factors, communication triggers and family/system factors. Understanding factors that impact communication about self-management between parents and adolescents will enable healthcare professionals to provide support and targeted interventions as parent and adolescent roles change over time.

The impact of prehabilitation interventions on affective and functional outcomes for young to midlife adult cancer patients: A systematic review.

OBJECTIVE: Cancer remains one of the most enduring health crises of the modern world. Prehabilitation is a relatively new intervention aimed at preparing individuals for the stresses associated with treatment from diagnosis. Prehabilitation can include exercise, psychological and nutrition-based interventions. The present systematic review aimed to assess the efficacy of prehabilitation on affective and functional outcomes for young to midlife adult cancer patients (18-55 years). Outcomes of interest included prehabilitation programme composition, duration, mode of delivery and measures used to determine impact on affective and functional outcomes. METHODS: The following databases were searched with controlled and free text vocabulary; Psychological Information database (PsychINFO), Culmunated Index to Nursing and Allied Health Literature (CINAHL), Medical Literature Analysis and Retrieval System Online (MEDLINE), Excerpta Medica Database (EMBASE) and Public MEDLINE (PubMed). Abstract and full-text screening was conducted with a secondary reviewer and final texts were subject to risk of bias analysis. RESULTS: Thirteen texts were included at full-text. These included data of 797 prehabilitation participants (mean age 53 years) and a large representation of female participants (71% average). Evidence was found for the efficacy of psychological prehabilitation for anxiety reduction. Prehabilitation did not significantly affect health related quality of life. Findings moderately supported the therapeutic validity of exercise prehabilitation for functional outcomes, both in terms of clinical and experimental improvement with respect to the quality of evidence. Variation between all prehabilitation types was observed. There was insufficient evidence to support the efficacy of psychological prehabilitation on stress, distress or depression. CONCLUSION: Implications for future research are highlighted and then discussed with respect to this young to midlife age group.

A qualitative meta-synthesis examining spirituality as experienced by individuals living with terminal cancer.

This review aimed to examine and synthesise literature on spirituality as experienced by individuals living with terminal cancer. Six databases were systematically searched for studies with qualitative findings relevant to spirituality and terminal cancer. Thirty-seven studies were included and thematic synthesis was used to identify themes. Analytical themes included: making sense of dying; living with dying; feeling connected; and being reflective. This review highlights how the experience of spirituality can positively impact the lives of terminal cancer patients. Further, these findings suggest that spirituality can be a transformative experience that allows individuals to experience peace at end of life.