Children and young people's experiences and perceptions of self-management of type 1 diabetes: A qualitative meta-synthesis.
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SUBMITTER: Tuohy E
PROVIDER: S-EPMC6751535 | biostudies-literature | 2019 Jul-Dec
REPOSITORIES: biostudies-literature
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Children and young people's experiences and perceptions of self-management of type 1 diabetes: A qualitative meta-synthesis.
Tuohy Ella E Rawdon Caroline C Gallagher Pamela P Glacken Michele M Murphy Nuala N Swallow Veronica V Lambert Veronica V
Health psychology open 20190701 2
The aim of this review was to conduct a meta-synthesis of the experiences and perceptions of self-management of type 1 diabetes of children and young people living with type 1 diabetes (CYPDs). Six databases were systematically searched for studies with qualitative findings relevant to CYPDs' (aged 8-18 years) experiences of self-management. A thematic synthesis approach was used to combine articles and identify analytical themes. Forty articles met the inclusion criteria. Two analytical themes ...[more]
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Project description:Adequate self-management is the cornerstone of preventing type 1 diabetes mellitus (T1DM) complications. However, T1DM self-management is challenging for young people, who often struggle during the transition from childhood to adulthood. The mobile health (mHealth) app Young with Diabetes (YWD) was developed in collaboration with young people to enhance their T1DM self-management during this transition.The purpose of this study was to explore the influence of YWD on young people's self-management during a 12-month period.A qualitative explorative approach was used, comprising a purposive sample of 20 young people (11 females and 9 males, ages 15 to 23 years, with app use of 3 to 64 days) from 3 pediatric and 3 adult departments. Participants were interviewed individually using a semistructured interview guide. Data were collected from January to March 2017 and analyzed using thematic analysis.A total of 5 themes were identified: (1) not feeling alone anymore ("we are in this together"); (2) gaining competence by sharing experiences and practical knowledge ("they know what they are talking about"); (3) feeling safer ("it's just a click away"); (4) breaking the ice by starting to share thoughts and feelings and asking for help ("it is an outstretched hand"); and (5) lack of motivating factors ("done with the app"). Young people reported that YWD promoted self-management by peer-to-peer social support, exchanging messages with health care providers, and sharing YWD with parents. Participants recommended YWD as a supplement to self-management for newly diagnosed young people with T1DM and suggested improvements in app content and functionality.The mHealth app YWD has the potential to support self-management. In particular, peer-to-peer support reduced feelings of loneliness and helped young people to gain knowledge and skills for managing T1DM. A need exists for alternative ways to train health care providers in using YWD and to support collaboration between young people and their parents to further improve young people's self-management of T1DM.
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Project description:Children with developmental coordination disorder (DCD) face significant challenges to deal with everyday activities due to underlying motor proficiency difficulties. These challenges affect children and young people's participation; that is, involvement in daily life situations. In the past, limited consideration was given to personal experience of events, relationships and everyday life in children and young people with DCD; as a result, understanding what it is like to live with DCD is not well conceptualised in the literature. There is a pressing need to synthesise the findings of discrete qualitative studies to advance the conceptual understanding of living with DCD, to inform health service delivery and the development and implementation of complex interventions. This study aims to systematically review and synthesise qualitative literature regarding children and young people's experiences and views of everyday life and living with DCD. The method of qualitative evidence synthesis that will be followed in this review is a meta-ethnography. The eMERGe and PRISMA reporting guidelines will be used in the development, design and reporting of this review. Nine databases will be searched; Academic Search Complete, AMED, CINAHL, MEDLINE, PsychArticles, PsychInfo, EMBASE, SPORTDiscus, and Web of Science. Two independent reviewers will use the Joanna Briggs Institute Checklist to appraise all included papers. The findings of this meta-ethnography will endeavour to inform future research, policy and practice. In particular, the results will help to inform the design of future complex interventions to meet the needs of children and young people with DCD. Dissemination will involve the publication of the results in a peer-reviewed journal. Increasingly researchers and policymakers are calling for services to be informed by the perspective and voice of children with DCD; therefore, a policy brief will be published so that the findings are widely available. Registration: PROSPERO registration number CRD42019129178; registered on 09 July 2019.
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Project description:BACKGROUND:Cognitive behavioral therapy (CBT) for young people is increasingly being provided using technology-assisted formats. Although there is increasing evidence regarding the efficacy of such approaches, as illustrated by quantitative systematic reviews, the literature has also highlighted challenges with implementation factors, including high attrition rates and variable user engagement. Qualitative review methods can help to address the factors that impact young peoples' experience of technology-assisted cognitive behavioral therapy (tech-assisted CBT) and, thus, enable us to better understand such implementation factors. To date, no such qualitative synthesis exists. OBJECTIVE:The primary aim of this review was to systematically identify and synthesize the qualitative literature concerning the experiences of young people who have used tech-assisted CBT. METHODS:This systematic review applied Thomas and Harden's 2008 qualitative thematic synthesis approach. This involved line-by-line coding of the results sections of included studies and an inductive analysis on identified themes, followed by the generation of analytical themes through a process of iteration and interpretation of the descriptive themes. PsycINFO, ACM Digital Library, PubMed, EMBASE, and JMIR Publications databases were searched. The inclusion criteria were (1) studies involving school-aged young people over preschool age (6 years) but under the age of 18 years, (2) use of any form of tech-assisted CBT for any time period, (3) a stated focus of qualitative data to document the experiences of participants, and (4) studies published in English. The exclusion criteria were (1) interventions only provided face-to-face with no technological component, (2) only focused on the performance of the technology rather than participant experience, and (3) numerical data that sought to represent qualitative data. RESULTS:A total of 14 studies were included in this review. Overall, these studies represented interventions for low mood and anxiety (n=10), trauma or self-harm (n=2), and physical difficulties (n=2). Overall, 5 analytical themes emerged on young people's experiences with tech-assisted CBT: (1) helpfulness, (2) therapeutic process, (3) transferability, (4) gameplay experience, and (5) limitations. In addition, these analytical themes contained the following subthemes: positive experiences, tech-assisted CBT versus face-to-face CBT, understanding of a CBT model, process of change, skills development, application to everyday life settings, parental involvement, character relatedness, playability, negative experiences, and broad content. CONCLUSIONS:Overall, young people's experiences with tech-assisted CBT were mostly positive. The use of gaming environments, relatable characters, concrete metaphors, and age-appropriate narratives contributed to these positive experiences. Evidence suggests that technology can help to mediate face-to-face relationships with therapists and help young people to understand the CBT model. Clear barriers also emerged, including over-reliance on reading and writing skills and dissatisfaction with overly generalized content and comparison with commercial technologies. TRIAL REGISTRATION:International Prospective Register of Systematic Reviews (PROSPERO) CRD42018103388; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018103388.
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Project description:Many young people who engage in self-harm do not seek help from health services. For those that do, emergency departments (EDs) are a key point of contact. Substantial gaps remain in current knowledge related to young consumers' experiences and views on optimal treatment of self-harm in the ED. In this study, semi-structured interviews were conducted with thirteen young people (Mage = 21.2 years), who were engaged with care at headspace early intervention centers and had presented to an ED with a self-inflicted physical injury. Participants were asked to describe their experience in the ED and the care they received. Data were analyzed thematically. Three inter-related themes were identified: 1. The ED was experienced through a lens of significant distress, 2. The ED environment and processes were counter-therapeutic, and 3. Staff were perceived to be disinterested, dismissive, and lacking in knowledge. The study highlights the overwhelmingly negative nature of participants' experiences, and presents recommendations for service and practice improvements, such as the provision of staff training and increased aftercare.
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Project description:Background:alcohol presents risks to the health of older adults at levels that may have been 'safer' earlier in life. Moderate drinking is associated with some health benefits, and can play a positive role in older people's social lives. To support healthy ageing, we must understand older people's views with regards to their drinking. This study aims to synthesise qualitative evidence exploring the perceptions and experiences of alcohol use by adults aged 50 years and over. Methods:a pre-specified search strategy was applied to Medline, PsychINFO, Scopus, Applied Social Sciences Index and Abstracts and Cumulative Index to Nursing and Allied Health Literature databases from starting dates. Grey literature, relevant journals, references and citations of included articles were searched. Two independent reviewers sifted articles and assessed study quality. Principles of thematic analysis were applied to synthesise the findings from included studies. Results:of 2,056 unique articles identified, 25 articles met inclusion criteria. Four themes explained study findings: routines and rituals of older people's drinking; self-image as a responsible drinker; perceptions of alcohol and the ageing body; and older people's access to alcohol. Differences between gender, countries and social patterns are highlighted. Conclusions:older people perceive themselves as controlled and responsible drinkers. They may not recognise risks associated with alcohol, but appreciate its role in sustaining social and leisure activities important to health and well-being in later life. These are important considerations for intervention development. Drinking is routinised across the life course and may be difficult to change in retirement.
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Project description:BackgroundAcne vulgaris is a common skin condition affecting approximately 95% of adolescents to some extent. First-line treatments are topical preparations but nonadherence is common. A substantial proportion of patients take long courses of oral antibiotics, associated with antibiotic resistance.ObjectivesThis study aimed to explore young people's views and experiences of acne and its treatments.MethodsWe report a secondary thematic analysis of interview data collected by researchers in the Health Experiences Research Group (HERG), University of Oxford. A total of 25 transcripts from young people aged 13-24 years with acne were included.ResultsAcne is often perceived as a short-term self-limiting condition of adolescence and this appears to have implications for seeking treatment or advice. Participants widely perceived topical treatments as being ineffective, which seemed related to unrealistic expectations around speed of onset of action. Many participants felt they had tried all available topical treatments, although were unsure what was in them or unaware of differences between cosmetic and pharmaceutical treatments. They had concerns around how to use topicals 'properly' and how to avoid side-effects. They were also concerned about the side-effects or necessity of oral treatments, although few seemed aware of antibiotic resistance.ConclusionsPeople with acne need support to manage their condition effectively, particularly a better understanding of different topicals, how to use them and how to avoid side-effects. Unrealistic expectations about the onset of action of treatments appears to be a common cause of frustration and nonadherence. Directing people towards accessible evidence-based information is crucial. What's already known about this topic? There is a common perception that acne is a short-term condition that will resolve without treatment. Previous research has shown that nonadherence to topical treatments is common and that oral antibiotics are the most commonly prescribed treatment for acne in the U.K. Further research is needed to understand how young people perceive acne treatments and the implications of this for treatment adherence and self-management. What does this study add? People often said they had tried all available topical preparations for acne, but seemed confused between cosmetic and pharmaceutical treatments. People seemed unsure how to use topical treatments 'properly' or how to avoid side-effects. This was rarely discussed with health professionals. People's perception of acne as a short-term condition appeared to influence their expectations around onset of action of treatment and their views about its effectiveness and necessity. What are the clinical implications of the work? The perception of acne as a short-term condition has implications for self-management and motivation to seek and adhere to treatments. Providing advice about onset of action of treatments and how to prevent side-effects is crucial, including directing people towards accessible, written, evidence-based information. People's confusion about the different topical treatments available may be alleviated by such information, or by encouraging photos or other recordings of treatments tried and for how long. Linked Comment: Prior. Br J Dermatol 2020; 183:208-209. Plain language summary available online.
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Project description:BackgroundTo date services for children with Developmental Coordination Disorder (DCD) have not been informed by the perspective of children with DCD. This study aimed to synthesise the findings of discrete qualitative studies reporting the lived experiences views and preferences of children and young with DCD using a meta-ethnographic approach to develop new conceptual understandings.MethodsA systematic search of ten databases; Academic Search Complete, AMED, CINAHL, ERIC, MEDLINE, PsychArticles, PsychInfo, EMBASE, SPORTDiscus, and Web of Science, was conducted between March and April 2019, and updated in early June 2020. Meta-ethnography, following the method described by Noblit and Hare was used to synthesise included studies. The Joanna Briggs Institute Checklist was used to appraise all included papers. PROSPERO registration number CRD42019129178.ResultsFifteen studies met the inclusion criteria. Meta-ethnographic synthesis produced three themes; a) 'It's harder than it should be': Navigating daily activities b) Fitting in, and c) 'So what? I drop things': Strategies and supports to mitigate challenges. Children with DCD describe a mismatch between their abilities and performance norms for daily activities that led to a cascade of negative consequences including negative self-appraisal, bullying and exclusion. In the face of these difficulties children described creative and successful strategies they enacted and supports they accessed including; assistance from others (parents, friends and teachers), focusing on their strengths and talents, accepting and embracing their difference, adopting a "just do it" attitude, setting personal goals, self-exclusion from some social activities, using humour or sarcasm, viewing performance expectations as a social construct, and enjoying friendships as a forum for fun, acceptance and protection against exclusion.ConclusionService provision for children and young people with DCD should address the social and attitudinal environments, focus on friendship and social inclusion and address stigma-based bullying particularly within the school environment. Furthermore, practitioners should identify and foster children's own strategies for navigating daily life activities with DCD. The identified themes resonate with contemporary disability theory and the International Classification of Functioning. The social and attitudinal environmental context of children and young people with DCD profoundly influences their experiences. Future intervention development and service provision for children and young people with DCD should consider opportunities to address social and attitudinal environmental factors.
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Project description:Asthma is the most common chronic condition of childhood. Self-management is integral to good asthma control. This qualitative paper explores how children with asthma and their parents perceive asthma, their experience with asthma, and how they manage symptoms, preventions and medications within and outside the home. We undertook 15 focus groups with 41 school-aged (6-11 years) children with asthma and 38 parents. Parents and their children attended the same focus groups. We used thematic analysis to analyse the transcripts. Our findings show the impact asthma can have on children's social and emotional wellbeing and highlight how reliant school-aged children are on their parents to effectively manage their asthma. Parents reported being unsure when their child's symptoms warranted visiting their doctor or hospital. Schools were identified as a source of difficulty regarding asthma management; families reported that children may be self-conscious about their asthma and using their inhaler at school. School policies and teachers' lack of asthma knowledge were reported to exacerbate children's reluctance to use their inhaler at school. Our results have implications for the design and implementation of children's self-management interventions for their asthma, particularly when they are at school and away from their parents.
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