Barriers and facilitators of self-management of diabetes amongst people experiencing socioeconomic deprivation: A systematic review and qualitative synthesis.

BACKGROUND: The number of people living with diabetes is rising worldwide and a higher prevalence of diabetes has been linked to those experiencing socioeconomic deprivation. Self-management strategies are vital and known to reduce the risks of long-term complications amongst people living with diabetes. Lack of knowledge about self-care activity required to manage diabetes is a key barrier to successful self-management. Self-management interventions can be less effective in socioeconomically deprived populations which can increase the risk of exacerbating health inequalities. The purpose of this review is to identify and synthesise qualitative evidence on the barriers and facilitators of self-management of diabetes amongst people who are socioeconomically disadvantaged. METHODS: MEDLINE, EMBASE, AMED, PsycINFO and CINAHL Plus were searched for qualitative studies concerning self-management of multiple long-term conditions amongst socioeconomically disadvantaged populations. Relevant papers which focused on diabetes were identified. Data were coded and thematically synthesised using NVivo. FINDINGS: From the search results, 79 qualitative studies were identified after full-text screening and 26 studies were included in the final thematic analysis. Two overarching analytical themes were identified alongside a set of subthemes: (1) Socioeconomic barriers to diabetes self-management; healthcare costs, financial costs of healthy eating, cultural influences, living in areas of deprivation, competing priorities and time constraints, health literacy, (2) facilitators of diabetes self-management; lifestyle and having goals, support from healthcare providers, informal support. DISCUSSION: Self-management of diabetes is challenging for people experiencing socioeconomic deprivation due to barriers associated with living in areas of deprivation and financial barriers surrounding healthcare, medication and healthy food. Support from healthcare providers can facilitate self-management, and it is important that people with diabetes have access to interventions that are designed to be inclusive from a cultural perspective as well as affordable. PATIENT OR PUBLIC CONTRIBUTION: A patient advisory group contributed to the research questions and interpretation of the qualitative findings by reflecting on the themes developed.

The experiences and perceptions of healthy siblings of children with a long-term condition: Umbrella review.

PROBLEM: The lives of healthy siblings living with a sibling with a long- term condition are often shaped by the family, type of illness, length of illness, age of the child, caregiver demands, and support provided to the family, ill sibling, and healthy sibling. While the experiences of healthy siblings are documented in the literature by parent proxy, literature on healthy siblings self-reported experiences of living with a sibling who has a long-term condition remains scarce. PURPOSE: This umbrella review aims to synthesize reviews on the self-reported experiences of healthy siblings of children living with a sibling who has a long-term condition. ELIGIBILITY CRITERIA: Published peer-reviewed reviews in English language exploring the self-reported experiences of healthy siblings under 24 years old, whose siblings are diagnosed with a long-term condition. SAMPLE: Using a developed search strategy, seven electronic databases (CINAHLPlus, Scopus, PubMed, PsycINFO, Cochrane Database of Systematic Reviews, Clinical Key, and Google Scholar) were searched from 2018 till December 2023. Eleven reviews met the inclusion criteria and were subjected to narrative synthesis. RESULTS: Four themes (adjusting to changes, wanting to help, living the ups and downs, living the changes), and eight subthemes were generated from the syntheses. CONCLUSION: This is the first umbrella review undertaken on healthy siblings self-reported experiences of living with a sibling who has a long-term condition. The impact of a long-term condition on healthy siblings of children with a long-term condition suggests a need for healthcare providers and organisations to provide better emotional, psychological, and informational support to healthy siblings and their families. IMPLICATIONS: Findings from this review will inform healthcare providers, organisations, researchers, and policymakers on the development of future clinical practices and research for healthy siblings.

Supporting the parent-to-child transfer of self-management responsibility for chronic kidney disease: A qualitative study.

INTRODUCTION: As children with long-term conditions (LTCs) mature, they are usually expected to assume responsibility from their parents for self-management of their condition. Little is known about what supports families with this handover of responsibility, including the role of healthcare professionals (HCPs). This study aimed to explore what supports young people with chronic kidney disease (CKD) to assume self-management responsibility and parents to relinquish control. METHODS: A qualitative study, using a grounded theory approach was conducted. Individual and dyadic interviews and focus groups were carried out with 16 young people aged 13-17 years old with CKD, 13 parents, and 20 HCPs. Participants were recruited from two UK children's renal units. FINDINGS: Building and maintaining trust, fostering positivity, learning from mistakes, forming partnerships and individualized support, facilitated the transfer of self-management responsibility. However, HCPs' focus on developing partnerships with young people meant some parents felt excluded, highlighting uncertainty around whether support should be child- or family-centred. Although tailored support was identified as critical, aspects of local service provision appeared to impact on HCPs' capacity to implement individualized approaches. CONCLUSION: This study has identified what supports the handover of responsibility, and, importantly, HCPs' current, and potential role in helping young people to assume responsibility for managing their LTC. Further research is needed to explore how HCPs' involvement balances child- and family-centred care, and how HCPs can adopt personalized, strengths-based approaches to help ensure the support that families receive is tailored to their individual needs. PATIENT OR PUBLIC CONTRIBUTION: Patient and public involvement was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study's design and delivery.

The Effectiveness of Low-Intensity Psychological Interventions for Comorbid Depression and Anxiety in Patients with Long-Term Conditions: A Real-World Naturalistic Observational Study in IAPT Integrated Care.

BACKGROUND: Low-intensity psychological interventions may be a cost-effective, accessible solution for treating depression and anxiety in patients with long-term conditions, but evidence from real-world service settings is lacking. This study examined the effectiveness of low-intensity psychological interventions provided in the Improving Access to Psychological Therapies programme in England for patients with and without long-term conditions. METHODS: A retrospective analysis was conducted on patients (total N = 21,051, long-term conditions n = 4024) enrolled in three low-intensity psychological interventions, i.e. Internet-delivered cognitive behavioural therapy (iCBT), guided self-help (GSH), and psychoeducational group therapy (PGT) within a Talking Therapies service from 2016 to 2020. Primary outcomes included pre-post-treatment changes in depression (Patient Health Questionnaire-9) and anxiety (Generalised Anxiety Disorder-7). RESULTS: Overall, both cohorts significantly improved on all outcomes post-treatment, with large effect sizes. Patients with long-term conditions experienced a greater reduction in depression while those without experienced a greater reduction in anxiety, but these differences were marginal (< 1 score difference on both measures). No difference between the cohorts was shown when comparing the differential effectiveness across interventions, but those engaging in iCBT showed greater reduction in depression and anxiety than those in GSH and PGT, while those in GSH improved more than PGT. CONCLUSIONS: Low-intensity psychological interventions, particularly iCBT, were effective in treating depression and anxiety in patients with long-term conditions in a real-world service setting. Our large-scale study supports the continued and increased implementation of low-intensity psychological interventions for this subpopulation via integrated care.

Efficient Sufficiency: A qualitative evaluation of a 1 year pilot study of young people and parents accessing a mental health drop-in centre in a paediatric hospital.

BACKGROUND: Children and young people with long-term physical health conditions (LTC) are known to have higher levels of co-morbid mental health problems than medically healthy children. Evidence-based treatments for mental health problems are effective in children who also have an LTC. This study aimed to explore the factors associated with participants' perceived acceptability and impact of a transdiagnostic mental health centre offering brief psychological assessment and treatment for children and young people and/or their families with mental health needs in the context of long term physical conditions. METHODS: One-hundred twenty-eight patients attending the drop-in centre were invited to participate. Overall, 35 participated (31 parents/carers; 4 children and young people) in semi-structured interviews (either in person or by phone) exploring their experience of the centre. Interviews were audio-recorded, transcribed and checked. Framework analysis was then conducted on all transcripts. RESULTS: Overall, participants found the drop-in centre highly acceptable and reported a positive experience. Reasons for this varied but broadly focused around four themes: (1) efficient sufficiency; (2) autonomy; (3) fusion of process and content factors and (4) (dis)parities of esteems and 'seeing both sides of the coin'. CONCLUSIONS: Participants found the intervention acceptable. A mental health drop-in centre in a paediatric hospital appears to be a positive and valued adjunct to supplement existing mental health services.

Accessibility and applicability of physical activity guidelines and recommendations for adults living with long term conditions during COVID-19.

To review the applicability and accessibility of physical activity guidelines for adults living with long-term conditions whilst shielding during the COVID-19. A narrative review with systematic methodology was conducted between 2015 and 2021, with two stages: 1) Search of electronic databases PubMed/Medline, Web of Science, PsycInfo, and Cinahl; 2) search of long-term condition organisations. Sixty-five articles were identified, where nine included specific guidelines during the COVID-19, 28 specific guidelines to individuals living with long-term conditions and 7 identified the utilization of online resources. Twenty-one long-term condition organizations websites were reviewed where all of them included a section regarding physical activity guidelines and seven referred to online and offline accessible resources during COVID-19. Accessibility and applicability were variable across academic databases and long-term conditions organisation websites. Findings could inform long-term condition policy and guidelines development to better and more relevant support people living with long-term conditions to be physically active.

Shifting responsibilities: A qualitative study of how young people assume responsibility from their parents for self-management of their chronic kidney disease.

INTRODUCTION: The responsibility for managing a long-term condition (LTC) such as chronic kidney disease (CKD) typically transfers from parent to child, as children become older. However, children can find it challenging to become independent at managing their LTC, and evidence for how healthcare professionals (HCPs) support transfer of responsibility is limited. This study aimed to explore how young people with CKD assume responsibility for managing their condition and the HCP's role during this process. METHODS: Sampling, qualitative data collection and analysis were guided by a constructivist grounded theory approach. Individual and dyadic interviews, and focus groups, were conducted with 16 young people aged 13-17 years with CKD, 13 parents and 20 HCPs. FINDINGS: A grounded theory, shifting responsibilities, was developed that provides new insights into how young people's, parents' and HCPs' constructions of the transfer of responsibility differed. These diverse constructions contributed to multiple uncertainties around the role of HCPs, when the process started and was completed and whether the endpoint of the process was young people's self-management or young person-parent shared management. CONCLUSION: Families would benefit from HCP support over a longer timeframe that integrates assuming self-management responsibility with gaining independence in other areas of their lives and focuses on young people 'doing' self-management. PATIENT OR PUBLIC CONTRIBUTION: Patient and public involvement was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study's design and delivery.

Validation of living with chronic illness scale in a type 2 diabetes mellitus population.

BACKGROUND: Worldwide, type 2 diabetes mellitus (T2DM) is one of the most prevalent chronic diseases and one of those producing greatest impact on patients' day-to-day quality of life. Our study aim is to validate the "Living with Chronic Illness Scale" for a Spanish-speaking T2DM population. METHODS: In this observational, international, cross-sectional study, 582 persons with T2DM were recruited in primary care and outpatient hospital consultations, in Spain and Colombia, during the period from May 2018 to June 2019. The properties analysed were feasibility/acceptability, internal consistency, reliability, precision and (structural) content-construct validity including confirmatory factor analysis. The COSMIN checklist was used to assess the methodological/psychometric quality of the instrument. RESULTS: The scale had an adequate internal consistency and test retest reliability (Cronbach's alpha = 0.90; intraclass correlation coefficient = 0.96, respectively). In addition, the instrument is precise (standard error of measurement = 3.34, with values < ½SD = 8.52) and correlates positively with social support (DUFSS) (rs = 0.56), quality of life (WHOQOL-BREF) (rs = 0.51-0.30) and ssatisfaction with life (SLS-6) (rs = 0.50-0.38). The original 26-items version of the scale did not support totally the confirmatory factor analysis. The COSMIN checklist is favourable for all the properties analysed, although weaknesses are detected for structural validity. CONCLUSIONS: The LW-CI-T2DM is a valid, reliable and accurate instrument for use in clinical practice to determine how a person's life is affected by the presence of diabetes. This instrument correlates well with the associated constructs of social support, quality of life and satisfaction. Additional research is needed to determine how well the questionnaire structure performs when robust factor analysis methods are applied.

Digital personal assistants are smart ways for assistive technology to aid the health and wellbeing of patients and carers.

BACKGROUND: Digital health solutions such as assistive technologies create significant opportunities to optimise the effectiveness of both health and social care delivery. Assistive technologies include 'low-tech' items, such as memory aids and digital calendars or 'high-tech' items, like health tracking devices and wearables. Depending on the type of assistive devices, they can be used to improve quality of life, effect lifestyle improvements and increase levels of independence. Acceptance of technology among patients and carers depends on various factors such as perceived skills and competencies in using the device, expectations, trust and reliability. This service evaluation explored the impact of a pilot service redesign focused on improving health and wellbeing by the use of a voice-activated device 'smart speaker', Alexa Echo Show 8. METHODS: A service evaluation/market research was conducted for a pilot service redesign programme. Data were collected via a survey in person or telephone and from two focus groups of patients (n = 44) and informal carers (n = 7). The age of the study participants ranged from 50 to 90 years. Also, the participants belonged to two types of cohort: one specifically focused on diabetes and the other on a range of long-term health conditions such as multiple sclerosis, dementia, depression and others. RESULTS: The device had a positive impact on the health and social well-being of the users; many direct and indirect benefits were identified. Both patients and carers had positive attitudes towards using the device. Self-reported benefits included: reminders for medications and appointments improved adherence and disease control; increased independence and productivity; and for those living alone, the device helped combat their loneliness and low mood. CONCLUSION: The findings from the study help to realise the potential of assistive technology for empowering supporting health/social care. Especially, the season of COVID-19 pandemic has highlighted the need for remote management of health, the use of assistive technology could have a pivotal role to play with the sustainability of health/social care provision by promoting shared care between the care provider and service user. Further evaluation can explore the key drivers and barriers for implementing assistive technologies, especially in people who are ageing and with long-term health conditions.

Living with Chronic Illness Scale: International validation through the classic test theory and Rasch analysis among Spanish-speaking populations with long-term conditions.

BACKGROUND: The Living with Chronic Illness (LW-CI) Scale is a comprehensive patient-reported outcome measure that evaluates the complex process of living with long-term conditions. OBJECTIVE: This study aimed to analyse the psychometric properties of the LW-CI scale according to the classic test theory and the Rasch model among individuals living with different long-term conditions. DESIGN: This was an observational, international and cross-sectional study. METHODS: A total of 2753 people from six Spanish-speaking countries living with type 2 diabetes mellitus, chronic obstructive pulmonary disease, chronic heart failure, Parkinson's disease, hypertension and osteoarthritis were included. The acceptability, internal consistency and validity of the LW-CI scale were analysed using the classical test theory, and fit to the model, unidimensionality, person separation index, item local independency and differential item functioning were analysed using the Rasch model. RESULTS: Cronbach's α for the LW-CI scale was .91, and correlation values for all domains of the LW-CI scale ranged from .62 to .68, except for Domain 1, which showed correlation coefficients less than .30. The LW-CI domains showed a good fit to the Rasch model, with unidimensionality, item local independency and moderate reliability providing scores in a true interval scale. Except for two items, the LW-CI scale was free from bias by long-term condition type. DISCUSSION: After some adjustments, the LW-CI scale is a reliable and valid measure showing a good fit to the Rasch model and is ready for use in research and clinical practice. Future implementation studies are suggested. PATIENT AND PUBLIC CONTRIBUTION: Patient and public involvement was conducted before this validation study - in the pilot study phase.

Integrated health Services for Children: a qualitative study of family perspectives.

BACKGROUND: There is increasing evidence that integrated care improves child related quality of life and reduces health service use. However, there is limited evidence on family perspectives about the quality of integrated care for children's services. This study aimed to understand children, young people, and caregivers' perceptions of a new integrated care service, and to identify essential components of integrated care for children and young people with ongoing conditions. METHODS: A qualitative analysis of in-depth interviews with caregivers and children included families (N = 37) with children with one of four ongoing conditions (asthma, eczema, epilepsy, constipation) who had experienced a new integrated care service delivered in South London, UK. RESULTS: Four key components of integrated services identified were: that the key health-worker understood the health needs of the family in context; that professionals involved children and caregivers in treatment; that holistic care that supported the family unit was provided; and that families experienced coordination across health, social, and education systems. CONCLUSIONS: Children and families identify care navigation and a holistic approach as key components that make high quality integrated care services. Service developments strengthening these aspects will align well with family perspectives on what works and what matters.

Medication adherence: understanding the issues and finding solutions.

Medication is the most frequent treatment intervention, and its success depends on patients taking their medicines in line with their prescribed regimen to yield the full benefit of the treatment. Adherence is especially difficult to ensure in those with multimorbidity, who take multiple medications to manage their conditions. Non-adherence is costly for the health service, both through wastage and increased ill health. Non-adherence may be intentional or non-intentional, and many factors affect an individual's compliance with a medication regimen. There are a variety of aids that may be helpful; however, the interaction with a health professional is very important, both for understanding the reason for non-adherence and for promoting adherence.

My Diabetes My Way: supporting online diabetes self-management: progress and analysis from 2016.

BACKGROUND: My Diabetes My Way (MDMW) is the National Health Service (NHS) Scotland website for people with diabetes and their carers. It consists of an interactive information website and an electronic personal health record (ePHR) available to the 291,981 people with diabetes in Scotland. We aimed to analyse the demographic characteristics of current registrants and system usage and activity during 2016. METHODS: We analysed system audit trails to monitor user activity and page accesses on the information website, and logins and activity within the ePHR. The ePHR contains data from SCI-Diabetes, NHS Scotland's flagship diabetes record, sourcing data from primary and secondary care, specialist screening services and laboratory systems. We reviewed patient registration characteristics to collate demographic data for the MWDH cohort, then compared this to aggregate data published in the 2016 Scottish Diabetes Survey. The Scottish Diabetes Survey is an annual population-based report detailing diabetes statistics for the whole diabetes population in NHS Scotland. RESULTS: The MDMW information website received an average of 101,382 page accesses per month during 2016 (56.9% increase from 2015; n = 64,607). ePHR registrants were more likely to be younger (p < 0.001) and have an ethnicity of "white" (p < 0.001) than the background diabetes population. At the end of 2016, 11,840 people with diabetes had accessed their personal clinical information (58.6% increase since end 2015; n = 7464). During 2016, an average of 1907 people accessed their records each month (48.3% increase from 2015; n = 1286). CONCLUSION: My Diabetes My Way is a useful tool aid to diabetes self-management. The service is unique in offering records access to a national population, providing information from all relevant diabetes-related sources, rather than a single silo. MDMW supports the diabetes improvement, self-management, healthcare quality and eHealth strategies of the Scottish Government. The service also has potential to be adapted to work with other clinical systems and conditions.

Community pharmacy integration within the primary care pathway for people with long-term conditions: a focus group study of patients', pharmacists' and GPs' experiences and expectations.

BACKGROUND: This study aimed to use marketing theory to examine the views of patients, pharmacists and general practitioners (GPs) on how community pharmacies are currently used and to identify how community pharmacy services may be better integrated within the primary care pathway for people with long-term conditions (LTCs). METHODS: A qualitative research design was used. Two focus groups were conducted with respiratory patients (n = 6, 5) and two with type 2 diabetes patients (both n = 5). Two focus groups were held with pharmacists (n = 7, 5) and two with GPs (both n = 5). The "7Ps marketing mix" ("product", "price", "place", "promotion", "people", "process", "physical evidence") was used to frame data collection and analysis. Data was analysed using thematic analysis. RESULTS: Due to the access and convenience of community pharmacies ("place"), all stakeholder groups recommended using community pharmacies over GP practices for services such as management of minor ailments, medication reviews and routine check-ups for well managed LTCs ("product"). All stakeholder groups preferred pharmacy services with clear specifications which focused on specific interventions to reduce variability in service delivery and quality ("process"). However, all stressed the importance of having an appropriate system to share relevant information, allowing pharmacists and GPs two-way flow ("process"). Pharmacists and GPs mentioned difficulties in collaborating with each other due to inter-professional tensions arising from funding conflicts, which leads to duplication of services and inefficient workflow within the primary care pathway ("people"). Patients and GPs were sometimes doubtful of community pharmacies' potential to expand services due to limited space, size and poor quality consultation rooms ("physical evidence"). However, all stakeholder groups recommended promoting community pharmacy services locally and nationally ("promotion"). Patients felt the most effective form of promotion was first-hand experience of high quality pharmacy services and peer word-of-mouth. The added value of using pharmacy services was faster access and convenience for patients, and freeing up GPs' time to focus on more complex patients ("value"). CONCLUSIONS: Using the 7Ps marketing mix highlighted factors which could influence utilisation and integration of community pharmacy services within the primary care pathway for patients with LTCs. Further research is needed to identify their relative importance.

Supporting children and young people to assume responsibility from their parents for the self-management of their long-term condition: An integrative review.

BACKGROUND: Children and young people with long-term conditions (LTCs) are usually dependent on, or share management with, their families and are expected to develop self-management skills as they mature. However, during adolescence, young people can find it challenging to follow prescribed treatment regimens resulting in poor clinical outcomes. Though reviews have looked at children's and parents' experiences of self-management, none have explicitly examined the parent-to-child transfer of self-management responsibility. METHODS: An integrative review was conducted with the aim of exploring the parent-to-child transfer of LTC self-management responsibility, through addressing two questions: (a) How do children assume responsibility from their parents for self-management of their LTC? (b) What influences the parent-to-child transfer of this responsibility? Eight databases were searched for papers published from 1995 to 2017. Methodological quality was assessed; included papers were synthesized to identify themes. RESULTS: Twenty-nine papers were identified. Most papers used qualitative designs and focused on children with diabetes. Participants were predominantly children and/or parents; only two studies included health professionals. Assuming self-management responsibility was viewed as part of normal development but was rarely explored within the context of the child gaining independence in other areas of their life. Children and parents adopted strategies to help the transfer, but there was limited evidence around health professionals' roles and ambivalence around what was helpful. There was a lack of clarity over whether children and parents were aiming for shared management, or self-management, and whether this was a realistic or desired goal for families. Multiple factors such as the child, family, social networks, health professional, and LTC influenced how a child assumed responsibility. CONCLUSIONS: Evidence suggests that the parent-to-child transfer of self-management responsibility is a complex, individualized process. Further research across childhood LTCs is needed to explore children's, parents', and professionals' views on this process and what support families require as responsibilities change.

"I'm not what I used to be": A qualitative study exploring how young people experience being diagnosed with a chronic illness.

BACKGROUND: Childhood long-term conditions are usually diagnosed in infancy or early childhood. Little is known about the particular experiences and needs of young people who receive a chronic illness diagnosis during adolescence or late childhood. This paper will examine this experience in relation to multiple sclerosis (MS), which is increasingly being diagnosed before adulthood. AIMS: To explore how young people experience an MS diagnosis. METHODS: Qualitative study using a grounded theory approach. In-depth interviews were conducted with 21 young people diagnosed with MS. Participants were recruited through health service and voluntary sector organizations in the United Kingdom. RESULTS: Young people's pre-illness normality was disrupted by the diagnosis of a chronic illness (MS). Participants experienced their body as changed physically, cognitively, and emotionally and as changeable due to symptom unpredictability. This influenced how participants perceived and presented their identity, disrupted their relationships, and altered their future biography. Young people developed strategies to manage their condition and identities in order to incorporate MS into their current and future lives, which required continual illness and identity work in response to changing symptoms, social contexts, and relationships. CONCLUSIONS: Although young peoples' experience of living with chronic illness has been widely explored, the aftermath of diagnosis has been underresearched from their perspective. This study contributes to this knowledge gap by illuminating how young people experience a chronic illness diagnosis and negotiate the resulting changes to their identity, relationships, and future. The findings suggest that young people need preparation and support in disclosing their diagnosis to others. Professionals supporting young people with long-term conditions need to work closely with specialist mental health services to ensure that they receive appropriate emotional support. Schools have an important role in ensuring young people with long-term conditions achieve their academic potential and receive appropriate careers advice.

Experiences of interventions aiming to improve the mental health and well-being of children and young people with a long-term physical condition: A systematic review and meta-ethnography.

BACKGROUND: Children and young people with long-term physical health conditions are at increased risk of experiencing mental health and well-being difficulties. However, there is a lack of research that explores the experiences of and attitudes towards interventions aiming to improve their mental health and well-being. This systematic review seeks to address this gap in the literature by exploring what children and young people with long-term conditions, their caregivers, and health practitioners perceive to be important aspects of interventions aiming to improve their mental health and well-being. METHODS: An information specialist searched five academic databases using predefined criteria for qualitative evaluations of interventions aiming to improve the mental health or well-being of children with long-term physical conditions. Reviewers also performed supplementary citation and grey literature searches. Two reviewers independently screened titles, abstracts, and full texts that met the inclusion criteria and conducted data extraction and quality assessment. Meta-ethnography was used to synthesize the findings. RESULTS: Screening identified 60 relevant articles. We identified five overarching constructs through the synthesis: (a) Getting In and Staying In, (b) Therapeutic Foundation, (c) Social Support, (d) A Hopeful Alternative, and (e) Empowerment. The line of argument that links these constructs together indicates that when interventions can provide an environment that allows young people to share their experiences and build empathetic relationships, it can enable participants to access social support and increase feelings of hope and empowerment. CONCLUSION: These findings may provide a framework to inform the development of mental health interventions for this population and evaluate existing interventions that already include some of the components or processes identified by this research. Further research is needed to establish which of the constructs identified by the line of argument are most effective in improving the mental well-being of young people living with long-term conditions.

Influencing factors when living with Parkinson's disease: A cross-sectional study.

AIMS AND OBJECTIVES: To identify the personal- and disease-related factors that are associated with living with Parkinson's disease. BACKGROUND: Living with Parkinson's disease affects the physical, psychological, social and spiritual areas of the person. Health professionals need to know which factors influence the daily living with Parkinson's disease, in order to facilitate a positive living. DESIGN: A multicentre cross-sectional study. METHODS: A total of 324 patients with Parkinson's disease diagnoses were included in the study through a consecutive case sampling. Data were collected from January-June 2015, in specialised units of movement disorders of public and private and community centres, from Spain, Argentina, Mexico, Ecuador and Cuba. Nine measures were applied to evaluate personal-related factors (age, gender, psychosocial function, satisfaction with life, social support, home economical situation) and Parkinson's disease-related factors (duration of disease, motor symptoms and non-motor symptoms). The STROBE checklist was used to ensure quality reporting during the study (see File S1). Multiple linear regression analysis was carried out. RESULTS: Results indicated that social support, followed by satisfaction with life and home economical situation are the only three factors that significantly influence in living with Parkinson's disease. The rest of the factors analysed did not present significant influence in the daily living with this neurodegenerative disease. CONCLUSION: This study highlights the necessity to put more emphasis on the person and his/her daily living with the condition and less on symptoms and treatment. Health professionals need to develop person-centred interventions that also deal with other elements of the experience of living with a long-term condition like Parkinson's disease. RELEVANCE TO CLINICAL PRACTICE: Interventions to foster positive living with Parkinson's disease in clinical practice should integrate strategies to tackle and prevent loneliness and interagency elements to increase community resources and systems of support.

Aging With Intellectual Disabilities in Families: Navigating Ever-Changing Seas-A Theoretical Model.

Life expectancy is increasing for people with intellectual disability, many of whom live with family. While there has been research about aging and future planning, there is limited evidence about the characteristics of the caregiving relationship. The aim of this study was to examine perspectives of caregiving for older people with intellectual disability and their family. A constructivist grounded theory approach was used, and 19 people with intellectual disability and 28 family members were interviewed. Caregiving was informed by transitions across the life course. Three interrelated concepts, Riding the Waves, Shifting Sands-Changing Tides, and Uncovering Horizons comprise the core components of the theoretical model-Navigating Ever-Changing Seas. This model informs complex, trans-generational relationships that impact decision-making for people with a long-term condition. Applications within health care indicate a need for systems to include individuals and their networks of care in policy, practice, research, and service delivery across the lifespan.

Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration.

BACKGROUND: Mobile apps for mobile phones and tablet devices are widely used by children and young people aged 0-18 years with long-term health conditions, such as chronic kidney disease (CKD), and their healthy peers for social networking or gaming. They are also poised to become a major source of health guidance. However, app development processes that are coproduced, rigorously developed, and evaluated to provide tailored, condition-specific, practical advice on day-to-day care management are seldom systematic or sufficiently described to enable replication. Furthermore, attempts to extrapolate to the real world are hampered by a poor understanding of the effects of key elements of app components. Therefore, effective and cost-effective novel, digital apps that will effectively and safely support care management are critical and timely. To inform development of such an app for children with CKD, a user requirements-gathering exercise was first needed. OBJECTIVE: To explore the views of children with CKD, their parents, and health care professionals to inform future development of a child-focused, care-management app. METHODS: Using age- and developmentally appropriate methods, we interviewed 36 participants: 5-10-year-olds (n=6), 11-14-year-olds (n=6), 15-18-year-olds (n=5), mothers (n=10), fathers (n=2), and health care professionals (n=7). Data were analyzed using Framework Analysis and behavior change theories. RESULTS: Of the 27 interviews, 19 (70%) interviews were individual and 8 (30%) were joint-5 out of 8 (63%) joint interviews were with a child or young person and their parent, 1 out of 8 (13%) were with a child and both parents, and 2 out of 8 (25%) were with 2 professionals. Three key themes emerged to inform development of a software requirement specification for a future home-based, digital care-management app intervention: (1) Gaps in current online information and support, (2) Difficulties experienced by children with a long-term condition, and (3) Suggestions for a digital care-management app. Reported gaps included the fact that current online information is not usually appropriate for children as it is "dry" and "boring," could be "scary," and was either hard to understand or not relevant to individuals' circumstances. For children, searching online was much less accessible than using a professional-endorsed mobile app. Children also reported difficulty explaining their condition to others, maintaining treatment adherence, coping with feeling isolated, and with trying to live a "normal" life. There was recognition that a developmentally appropriate, CKD-specific app could support the process of explaining the condition to healthy peers, reducing isolation, adhering to care-management plans, and living a "normal" life. Participants recommended a range of media and content to include in a tailored, interactive, age- and developmentally appropriate app. For example, the user would be able to enter their age and diagnosis so that only age-appropriate and condition-specific content is displayed. CONCLUSIONS: Future development of a digital app that meets the identified information and support needs and preferences of children with CKD will maximize its utility, thereby augmenting CKD caregiving and optimizing outcomes.