Transition to adult services for children and young people with palliative care needs : a systematic review

Objective: To evaluate the evidence on the transition process from child to adult services for young people with palliative care needs. Design: Systematic review Setting: Child and adult services and interface between healthcare providers. Patients: Young people aged 13 to 24 years with palliative care conditions in the process of transition. Main outcome measures: Young people and their families’ experiences of transition, the process of transition between services and its impact on continuity of care, and models of good practice. Results: 92 studies included. Papers on transition services were of variable quality when applied to palliative care contexts. Most focused on common life threatening and life limiting conditions. No standardised transition programme identified and most guidelines used to develop transition services were not evidence based. Most studies on transition programmes were predominantly condition-specific (e.g. cystic fibrosis, cancer) services. Cystic fibrosis services offered high quality transition with the most robust empirical evaluation. There were differing condition-dependent viewpoints on when transition should occur but agreement on major principles guiding transition planning and probable barriers. There was evidence of poor continuity between child and adult providers with most originating from within child settings. Conclusions: Palliative care was not, in itself, a useful concept for locating transition-related evidence. It is not possible to evaluate the merits of the various transition models for palliative care contexts, or their effects on continuity of care, as there are no long-term outcome data to measure their effectiveness. Use of validated outcome measures would facilitate research and service development

Optimizing Survivorship Care Services for Asian Adolescent and Young Adult Cancer Survivors: A Qualitative Study.

Purpose: With an increasing focus on developing survivorship services tailored for adolescent and young adult (AYA) cancer survivors, incorporation of viewpoints from both survivors and health care professionals (HCPs) is important. This study aims to explore the perceptions of current and prospective survivorship services from both groups in Singapore to propose service design and delivery strategies. Methods: Focus group discussions with 23 AYA cancer survivors between the ages of 16 and 39 years at diagnosis and 18 HCPs were conducted in National Cancer Centre Singapore (NCCS) and Singapore Cancer Society (SCS). All focus group discussions were transcribed verbatim. Deductive thematic analysis was performed according to the components of a design thinking model: empathizing with AYA survivors, defining care gaps, proposing services, and implementation strategies. Results: AYA survivors preferred age-specific services that are aligned with their personal goals. Current survivorship care failed to address the needs of survivors' dependents (caregivers and children) and to consider the utility of each service temporally. Prospective services should clarify disease disclosure obligation in job search and introduce a care navigator. Key implementation strategies included (1) training HCPs on communication techniques with AYA, (2) selecting engagement platforms that complement survivors' information-seeking behavior, (3) improving outreach to survivors through appropriate branding and publicity, and (4) consolidating services from multiple providers. Conclusions: The design of survivorship care services for AYA survivors should be systematic in its conceptualization process and employ implementation strategies. The coordination of the wide spectrum of services warrants a concerted effort by cancer centers, community partners, and the government

What teens know about HPV? A cross-sectional study with HBSC Portuguese survey

© 2016 Apex Journal InternationalGlobally, cervical cancer is the fourth leading cause of death for women and is usually associated with infection by the human papillomavirus (HPV). To analyse knowledge related to HPV in Portuguese adolescents, and identify the influence of gender, school year, having had sexual education/sexual intercourse in adolescents’ knowledge of HPV. The 2010 study provides national representative data of 5050 Portuguese adolescents, randomly chosen from those attending 6th, 8th and 10th grades during the 2009/2010 academic year. The sample included 52.3% girls and 47.7% males; whose mean age was 14.0 years old. Measures included knowledge of HPV transmission/prevention and having had sexual education/sexual intercourse. Overall, results showed the majority had low level of knowledge, responding incorrectly or saying they did not know the answer. Nevertheless, girls and adolescents who reported having had sex education in a school context showed significantly more knowledge than boys and adolescents who did not report having had sex education in a school context. Another result that should be emphasized is the positive effect that sex education at school had specifically in what regards knowledge about HPV. These results could have significant implications for information provision andthe targeting of future education programmes. In terms of prevention, it emphasises the need to teach about this issue, encourages HPV vaccination and regular screening for cervical cancer and other STIs, that are crucial for the promotion of healthy sexual behaviours.info:eu-repo/semantics/publishedVersio

Health Inequalities and People with Learning Disabilities in the UK

This briefing paper will assist Primary, Acute and Specialist NHS Trusts in fulfilling their responsibilities. In this report we summarise the most recent evidence from the UK on the health status of people with learning disabilities and the determinants of the health inequalities they face. Later in the autumn, IHaL will be producing a briefing for GP Commissioning Consortia and PCTs on practical commissioning actions to help address the issues identified in this report

Systematic review of transition models for young people with long-term conditions: A report for NHS Diabetes.

Aims For many young people with Type 1 diabetes, transition from paediatric to adult care can result in a marked deterioration in glycaemic control. A systematic review assessed the effectiveness of transition models, or components of models, for managing the transition process in young people with long-term conditions, including Type 1 diabetes. This involved identifying (i) the main barriers and facilitators in implementing a successful transition programme, and (ii) the key issues for young people with long-term conditions and professionals involved in the transition process. Methods The following databases were searched from inception to August 2012: MEDLINE, EMBASE, PsychINFO, CINAHL, ASSIA, Social Services Abstracts, Academic Search Complete, Social Science Citation Index, Cochrane and Campbell Libraries. Selected studies included young people aged 11 to 25 diagnosed with long-term conditions who were in transition from paediatric to adult secondary health care services. Results 16 systematic reviews and 13 primary studies were included from 9992 records retrieved. No single transition model was uniquely effective. The most successful transitions centred around: young person-focused; age and developmentally appropriate content and delivery; self-management education; family participation; paediatric and adult collaboration; designated transition clinics; transition co-ordinator; young person’s portfolio; specific professionals training; multidisciplinary approach; structured process embedded in service delivery. There were no distinctive characteristics of condition-specific Type 1 diabetes services. Conclusion This important and timely review summarises the key factors that need to be considered for the development of transition programmes for young people with long-term conditions, including those with Type 1 diabetes

Sex, Body Image, and Relationships: A BRIGHTLIGHT Workshop on Information and Support Needs of Adolescents and Young Adults

PURPOSE: Discovering sexuality and romantic relationships are important development milestones in adolescence and young adulthood. A cancer diagnosis imposes obstacles for young people such as changes in their sexual function due to the disease and/or side effects of treatment, body image concerns, and interpersonal relationship difficulties. This can cause psychological distress and can impact on quality of life. We aimed to explore sexual health information and support needs of adolescents and young adults with cancer. METHODS: Five young people aged 16-24 years, with a previous cancer diagnosis when aged 13-22 years, attended an in-depth 4-hour workshop. The framework approach was used to analyze workshop transcripts. RESULTS: Three overarching themes emerged: (i) information sharing; (ii) contexts and relationships (influencing factors); and (iii) information sharing preferences. Information shared by healthcare professionals was focused on a medicalized view of sex with symptoms, infection control, and protected sex at its core. Young people had unanswered questions related to sexual function, the impact of cancer and how to manage it, and about pleasure, body image, and relationships. Parents' presence at clinical consultations inhibited discussions about sex. Young people wanted professionals who were comfortable to talk about sex with them. CONCLUSION: Young people exhibited significant unmet needs around information provision on sex, body image, and relationships. They wanted information to be given by professionals and access to online resources. Development of training for professionals and resources to support young people requires further work

Differences in Internet use and eHealth needs of adolescent and young adult versus older cancer patients:Results from the PROFILES registry

SIMPLE SUMMARY: The internet has become an important health information source for patients with cancer. AYAs (adolescents and young adults; 18–39 years at time of diagnosis) can be considered as digital natives; they work with the internet and related technologies in their daily lives. It is likely that AYAs are more used to using the internet, while older cancer patients might prefer former ways of information provision to obtain health-related information. The question arises whether internet use and eHealth needs of AYA cancer patients are comparable to those of older ones. By conducting a cross-sectional survey, we evaluated differences in cancer-related internet patterns between AYAs and older cancer patients (40+ years at time of diagnosis). A better understanding of differences between generations will help inform healthcare providers on how to guide cancer patients of different ages regarding cancer-related internet use. ABSTRACT: Background: Our aim was to evaluate differences in cancer-related internet patterns between AYAs (adolescents and young adults; 18–39 years at time of diagnosis) and older adult cancer patients (40+ years). Methods: Cross-sectional surveys were distributed among AYA and older adult cancer patients regarding cancer-related internet use and eHealth needs. Results: 299 AYAs (mean age 31.8 years) and 270 older adults (mean age 55.8 years) participated. AYAs searched significantly more often on the internet on a daily basis just before diagnosis (45% vs. 37%), right after diagnosis (71% vs. 62%) and during treatment (65% vs. 59%) compared to older adults. During follow up, there was a trend that AYAs searched less often on the internet compared to older adults (15% vs. 17%). AYAs searched more often on topics, such as alternative or complementary therapies, treatment guidelines, fertility, end of life, sexuality and intimacy, lifestyle and insurance. AYAs felt significantly better informed (75%) after searching for cancer-related information compared to older adults (65%) and had significantly less unmet needs regarding access to their own medical information (22% vs. 47%). AYAs search more on the internet on a daily basis/several times per week in the diagnosis and treatment phase than older cancer patients. They search on different topics than older adults and seems to have less unmet eHealth needs.It is important that these are easy to find and reliable

Predicting the cognitive correlates of sun protective behaviour : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University

Previous research has explored the cognitive correlates of sun protective behaviour and has found that intention to use skin protection is likely to affect an individuals decision to use such behaviour. Other research has used social cognition models such as the Theory of Planned Behaviour to predict the use of sun protective behaviours with mixed results. The present study examined sun protective behaviour on beaches in New Zealand (n=80) and used a modified version of the Jones, Abraham, Harris, Schulz & Chrispin (1998) model of sun protective behaviour to predict sunscreen use. This modified version of the model contained variables from social cognition models, including the Theory of Planned Behaviour and Stage models of Health Behaviour such as that of Gollwitzer (1993). Knowledge, norms, threat likelihood, perceived threat, self-efficacy and motivation to prevent negative effects of sun exposure together accounted for 36.5% of the variance in intention to use sunscreen. The findings also suggest that motivation to prevent negative effects of sun exposure and threat likelihood consistently have the strongest correlational relationship (of all the prior cognitions) with both intention and sunscreen behaviour. A measure of planning did not mediate the effects of intentions on sunscreen use as was originally expected, rather, intentions had the largest effect on sunscreen use. It is reasonable to assume that planning may not always be necessary for the prediction of sunscreen behaviours. It was concluded that a modified version of the sun protective behaviour model may be useful in predicting such behaviours but refinement is required of the model and its measures. Implications for further research and model modification are noted