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How well do services for young people with long term conditions deliver features proposed to improve transition?

ABSTRACT: BACKGROUND:For young people with long-term conditions, transition from child to adult-oriented health services is a critical period which, if not managed well, may lead to poor outcomes. There are features of transition services which guidance and research suggest improve outcomes. We studied nine such features, calling them 'proposed beneficial features': age-banded clinic; meet adult team before transfer; promotion of health self-efficacy; written transition plan; appropriate parent involvement; key worker; coordinated team; holistic life-skills training; transition manager for clinical team. We aimed to describe the extent to which service providers offer these nine features, and to compare this with young people's reported experience of them. METHODS:A longitudinal, mixed methods study followed 374 young people as their care moved from child to adult health services. Participants had type 1 diabetes, cerebral palsy or autism spectrum disorder with additional mental health difficulties. Data are reported from the first two visits, one year apart. RESULTS:Three hundred four (81.3%) of the young people took part in the second visit (128 with diabetes, 91 with autism, 85 with cerebral palsy). Overall, the nine proposed beneficial features of transition services were poorly provided. Fewer than half of services stated they provided an age-banded clinic, written transition plan, transition manager for clinical team, a protocol for promotion of health self-efficacy, or holistic life-skills training. To varying degrees, young people reported that they had not experienced the features which services said they provided. For instance, the agreement for written transition plan, holistic life-skills training and key worker, was 30, 43 and 49% respectively. Agreement was better for appropriate parent involvement, age-banded clinic, promotion of health self-efficacy and coordinated team at 77, 77, 80 and 69% respectively. Variation in the meaning of the features as experienced by young people and families was evident from qualitative interviews and observations. CONCLUSIONS:UK services provide only some of the nine proposed beneficial features for supporting healthcare transition of young people with long term conditions. Observational studies or trials which examine the influence of features of transition services on outcomes should ensure that the experiences of young people and families are captured, and not rely on service specifications.

SUBMITTER: Colver A

PROVIDER: S-EPMC5941647 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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How well do services for young people with long term conditions deliver features proposed to improve transition?

Colver A A Pearse R R Watson R M RM Fay M M Rapley T T Mann K D KD Le Couteur A A Parr J R JR McConachie H H

BMC health services research 20180508 1

<h4>Background</h4>For young people with long-term conditions, transition from child to adult-oriented health services is a critical period which, if not managed well, may lead to poor outcomes. There are features of transition services which guidance and research suggest improve outcomes. We studied nine such features, calling them 'proposed beneficial features': age-banded clinic; meet adult team before transfer; promotion of health self-efficacy; written transition plan; appropriate parent in ...[more]

PMID: 29739396

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Project description:BACKGROUND:The transition of young patients from child and adolescent to adult mental health services often results in the interruption or termination of care. At this intersection, mental health professionals function as gatekeepers between systems, and their personal views on current clinical practice can contribute to a broader understanding of procedures and help identify reasons for service gaps. This qualitative study investigated the views of mental health professionals on services for young people during the transition from child and adolescent to adult mental health care, as well as on factors which facilitate or hinder continuity of care. METHODS:Four group discussions with 24 mental health professionals with various backgrounds were conducted. Groups were audio-taped, transcribed verbatim and analyzed following the reconstructive approach of R. Bohnsack's documentary method. RESULTS:A main theme and six subthemes emerged. Participants' overall concern was an increasing lack of patient centeredness in care provision. They criticized the limited flexibility and time constraints of their work, which was held to be incompatible with the time-consuming process of engaging young patients in care and coping with their individual needs. A lack of adequate interprofessional exchange and networking was seen as resulting in a diffuse sense of responsibility and a lack of clarity for all involved parties. Participants focused on the adverse impact of neglecting developmental characteristics in care procedures for young patients and revealed personal issues they experienced in their work with young patients (e. g. personal difficulties with diagnosing). CONCLUSIONS:Mental health professionals at this transitional point face a number of complex tasks as well as limitations in terms of time and personal support. An emphasis should be placed on forming and maintaining partnerships within and between systems which could contribute significantly to relieving professionals' workload. Furthermore, an open style of communication to engage young patients in care is essential. Strengthening communicative skills, improving knowledge about this life stage (especially when working in adult services), and promoting interprofessional encounters can help to develop new procedures in clinical practice. On higher system levels, heightened awareness of the need to reduce fragmentation of care and administrative barriers is needed.

Project description:BACKGROUND:Positive psychology interventions show promise for reducing psychosocial distress associated with health adversity and have the potential to be widely disseminated to young adults through technology. OBJECTIVE:This pilot randomized controlled trial examined the feasibility of delivering positive psychology skills via the Vivibot chatbot and its effects on key psychosocial well-being outcomes in young adults treated for cancer. METHODS:Young adults (age 18-29 years) were recruited within 5 years of completing active cancer treatment by using the Vivibot chatbot on Facebook messenger. Participants were randomized to either immediate access to Vivibot content (experimental group) or access to only daily emotion ratings and access to full chatbot content after 4 weeks (control). Created using a human-centered design process with young adults treated for cancer, Vivibot content includes 4 weeks of positive psychology skills, daily emotion ratings, video, and other material produced by survivors, and periodic feedback check-ins. All participants were assessed for psychosocial well-being via online surveys at baseline and weeks 2, 4, and 8. Analyses examined chatbot engagement and open-ended feedback on likability and perceived helpfulness and compared experimental and control groups with regard to anxiety and depression symptoms and positive and negative emotion changes between baseline and 4 weeks. To verify the main effects, follow-up analyses compared changes in the main outcomes between 4 and 8 weeks in the control group once participants had access to all chatbot content. RESULTS:Data from 45 young adults (36 women; mean age: 25 [SD 2.9]; experimental group: n=25; control group: n=20) were analyzed. Participants in the experimental group spent an average of 74 minutes across an average of 12 active sessions chatting with Vivibot and rated their experience as helpful (mean 2.0/3, SD 0.72) and would recommend it to a friend (mean 6.9/10; SD 2.6). Open-ended feedback noted its nonjudgmental nature as a particular benefit of the chatbot. After 4 weeks, participants in the experimental group reported an average reduction in anxiety of 2.58 standardized t-score units, while the control group reported an increase in anxiety of 0.7 units. A mixed-effects models revealed a trend-level (P=.09) interaction between group and time, with an effect size of 0.41. Those in the experimental group also experienced greater reductions in anxiety when they engaged in more sessions (z=-1.9, P=.06). There were no significant (or trend level) effects by group on changes in depression, positive emotion, or negative emotion. CONCLUSIONS:The chatbot format provides a useful and acceptable way of delivering positive psychology skills to young adults who have undergone cancer treatment and supports anxiety reduction. Further analysis with a larger sample size is required to confirm this pattern.

Project description:Objective:The aim of this study was to investigate the provision of community pharmacy services to children and young people with a focus on advanced services such as medicines use review. Perceptions and experiences of community pharmacists, pharmacy staff, young people and their parents or carers on the provision of such services were also explored. Methods:Four different cross-sectional, self-administered questionnaires were distributed in parallel to pharmacists, pharmacy staff members, children and young people and parents in the United Kingdom. Results:An outline of pharmacist's current involvement with children and young people was provided by 92 pharmacists. A different group of 38 community pharmacists and 40 non-pharmacist members of pharmacy staff from a total of 46 pharmacies provided information and views on the conduct of Medicines use review with children and young people. Experiences of advanced pharmacy service provision were collected from 51 children and young people and 18 parents. Most pharmacists offered public health advice to children and young people (73/92; 79.3%) and even more (83/92; 90.2%) reported that they often interacted with children and young people with long-term condition. Despite their high levels of interaction, and a majority opinion that medicines use reviews could benefit children (35/38; 92.1%), the number of pharmacies reporting to have conducted medicines use reviews with children was low (5/41). Pharmacists perceived the main barriers to recruitment as consent (17/29; 58.6%), guideline ambiguity (14/29; 48.3%) and training (13/29; 44.8%). A considerable proportion pharmacists (12/29; 41.4%) and other personnel (14/33; 42.4%) working in community pharmacies were unaware that children were potentially eligible for medicines use reviews. Only 29.4% of the 51 children and young people participants had received advice about their long-term condition from a pharmacist and the majority (46/51; 90.2%) had not taken part in an advanced service focused on adherence. Conclusions:While general engagement with children and young people appears high from the pharmacist's perspective, advice specific to children and young people with long-term conditions and the provision of advanced services in this group remains a challenge.

Project description:BACKGROUND:Adaptive coping behaviors can improve well-being for young people experiencing life stressors, while maladaptive coping can increase vulnerability to mental health problems in youth and into adulthood. Young people could potentially benefit from the use of digital technology tools to enhance their coping skills and overcome barriers in help-seeking behaviors. However, little is known about the desired digital technology use for self-management of well-being among young people in the general population. OBJECTIVE:This is a small, qualitative study aimed at exploring what young people desire from digital technology tools for the self-management of their well-being. METHODS:Young people aged 12-18 years were recruited from the general community to take part in semistructured interviews. Recorded data from the interviews were transcribed and analyzed using inductive thematic analysis. RESULTS:In total, 14 participants were recruited and completed the study, with a mean age of 14.6 years (female n=3). None of the participants reported using any digital tools specifically designed to manage well-being. However, as indicated through the emerged themes, young people used digital technology to reduce their stress levels and manage their mood, mainly through games, music, and videos. Overall, identified themes showed that young people were keen on using such tools and desired certain facets and features of an ideal tool for self-management of well-being. Themes related to these facets indicated what young people felt a tool should do to improve well-being, including being immersed in a stress-free environment, being uplifting, and that such a tool would direct them to resources based on their needs. The feature-based themes suggested that young people wanted the tool to be flexible and enable engagement with others while also being sensitive to privacy. CONCLUSIONS:The young people interviewed in this study did not report engaging with digital technology specialized to improving well-being but instead used media already accessed in their daily lives in order to self-manage their psychological states. As a result, the variety of coping strategies reported and digital tools used was limited to the resources that were already being used for recreational and social purposes. These findings contribute to the scarce research into young people's preferred use of digital technology tools for the self-management of their well-being. However, this was a small-scale study and the current participant sample is not representative of the general youth population. Therefore, the results are only tentative and warrant further investigation.

Project description:ObjectivesTo describe the experiences of patients with long-term conditions who are referred to and engage with a Link Worker social prescribing programme and identify the impact of the Link Worker programme on health and well-being.DesignQualitative study using semistructured interviews with thematic analysis of the data.InterventionLink Worker social prescribing programme comprising personalised support to identify meaningful health and wellness goals, ongoing support to achieve agreed objectives and linkage into appropriate community services.SettingInner-city area in West Newcastle upon Tyne, UK (population n=132 000) ranked 40th most socioeconomically deprived in England, served by 17 general practices.ParticipantsThirty adults with long-term conditions, 14 female, 16 male aged 40-74 years, mean age 62 years, 24 white British, 1 white Irish, 5 from black and minority ethnic communities.ResultsMost participants experienced multimorbidity combined with mental health problems, low self-confidence and social isolation. All were adversely affected physically, emotionally and socially by their health problems. The intervention engendered feelings of control and self-confidence, reduced social isolation and had a positive impact on health-related behaviours including weight loss, healthier eating and increased physical activity. Management of long-term conditions and mental health in the face of multimorbidity improved and participants reported greater resilience and more effective problem-solving strategies.ConclusionsFindings suggest that tackling complex and long-term health problems requires an extensive holistic approach not possible in routine primary care. This model of social prescribing, which takes into account physical and mental health, and social and economic issues, was successful for patients who engaged with the service. Future research on a larger scale is required to assess when and for whom social prescribing is clinically effective and cost-effective.

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How well do services for young people with long term conditions deliver features proposed to improve transition?

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How well do services for young people with long term conditions deliver features proposed to improve transition?

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