Dataset Information

This is me: A qualitative investigation of young people's experience of growing up with visual impairment.

ABSTRACT:

Background

Childhood visual impairment (VI) has a profound impact on many aspects of childhood and adolescence. This is well-documented in cross-sectional and/or quantitative studies utilizing self-report instruments which compare children with and without VI. Young people's views on the experience of growing up with VI as a developmental, change-driven process remain largely unexplored.

Methods

As part of our broader research programme on quality of life of visually impaired children and young people in the United Kingdom, in-depth, semi-structured interviews were conducted between March and June 2015, with a stratified sample of 17 young people with VI, aged 16-19 years. An age-sensitive, empirically-based topic guide encouraged retrospective reflections on participants' experiences of growing up with VI, including age-normative and vision-specific challenges.

Results

Descriptions of growing up with VI largely centered on an overarching higher-order theme labelled becoming me. Four themes representing everyday activities, attitudes, preferences and perceptions in relation to i) social relationships, ii) independence and responsibilities, iii) the future, and iv) rising to challenges emerged and were used by participants in their description of three stages in which they developed a sense of self: i) laying the foundations, ii) testing the waters, and iii) this is me. Differences in manifestation of VI influenced how young people made sense of their experiences and their sense of self.

Conclusions

Findings are discussed in relation to normative and vision-specific changes in psychosocial development during adolescence, including the development of identity. They highlight the need for ongoing monitoring of subjective well-being in a clinical population with a unique early life course trajectory.

SUBMITTER: Robertson AO

PROVIDER: S-EPMC8263264 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundSocial media use has become ubiquitous in the lives of many people, especially young adults. A popular recent trend emerging on social media is that of posting and following 'Fitspirational' content - material that purports to motivate and showcase healthy lifestyle habits, particularly relating to exercise and diet. There is very limited existing literature on how engaging with this type of content influences people's psychological and physical heath. Initial studies have focused on concerns over potential negative effects on psychological wellbeing including body image, self-esteem and eating disorders.ObjectiveWe aimed to address a gap in the literature for exploratory research on this topic from the perspective of users. We used a qualitative approach to explore how people experience viewing Fitspiration on social media including why and how they engage with this material and how they perceive that it affects their thoughts, emotions, behaviour and health.MethodsWe recruited 20 young adults (14 females, 6 males, aged 18-25) who self-declared themselves to be Fitspiration followers to participate in either focus groups or individual interviews. We asked detailed, open-ended questions about their motivations for following Fitspiration, experiences of viewing this content and its perceived impact. We used inductive thematic analysis to derive themes that represented common and salient features of the data set.ResultsFour main themes were developed: 1) A tool with the potential to support healthy living, 2) Unrealistic, untrustworthy content, 3) Negative effects on emotional wellbeing, and 4) Vulnerability and protective factors. Following Fitspirational posts on social media can provide young people with knowledge and motivation that may support healthy lifestyle behaviours. However, a range of harms also appeared to arise from Fitspiration viewing ranging from minor annoyances and frustrations to more meaningful negative effects on psychological & physical health. These negative effects seemed to persist despite individuals acknowledging that the material can be unrealistic, and believing that they are personally equipped to minimise harms to themselves.ConclusionsThis study suggests that Fitspiration on social media can be attractive and compelling for young people but appears to bring about negative as well as positive effects. Future research should aim to confirm the scale and intensity of positive and negative effects and investigate ways of harnessing desirable outcomes and minimising undesirable outcomes.

Project description:ObjectivesThe purpose of this study was to appraise referrals of homeless patients to physiotherapy services and explore perceptions of barriers to access.DesignThis exploratory mixed-method study used a follow-up qualitative extension to core quantitative research design. Over 9?months, quantitative data were gathered from the healthcare records of homeless patients referred to physiotherapy by a general practitioner (GP) practice, including the number of referrals and demographic data of all homeless patients referred. Corresponding physiotherapy records of those people referred to physiotherapy were searched for the outcome of their care. Qualitative semi-structured telephone interviews, based on the quantitative findings, were carried out with staff involved with patient care from the referring GP practice and were used to expand insight into the quantitative findings.SettingTwo primary care sites provided data for this study: a GP practice dedicated exclusively to homeless people and the physiotherapy department receiving their referrals.ParticipantsQuantitative data from the healthcare records of 34 homeless patient referrals to physiotherapy were collected and analysed. In addition, five staff involved in patient care were interviewed.Results34 referrals of homeless people were made to physiotherapy in a 9-month period. It was possible to match 25 of these to records from the physiotherapy department. Nine (36%) patients did not attend their first appointment; seven (28%) attended an initial appointment, but did not attend a subsequent appointment and were discharged from the service; five (20%) completed treatment and four patients (16%) had ongoing treatment. Semi-structured interviews revealed potential barriers preventing homeless people from accessing physiotherapy services, the complex factors being faced by those making referrals and possible ways to improve physiotherapy access.ConclusionsHomeless people with musculoskeletal problems may fail to access physiotherapy treatment, but opportunities exist to make access to physiotherapy easier.

Project description:BackgroundHIV self-testing (HIVST) provides young people with a convenient, discreet, and empowering way to know their HIV status. However, there is limited knowledge of young people's preferences for HIVST services and potential factors that may influence the uptake of HIVST among this population. The purpose of this research was to use qualitative methods to examine HIVST preferences among Nigerian youth.MethodsSemi-structured in-depth interviews with a purposive sample of young people 14-24 years old were conducted in Lagos, Nigeria. Data were analyzed thematically to identify themes and domains related to preferences and factors influencing the use of HIV self-testing.ResultsA total of 65 youth with mean age of 21 years, were interviewed, and the majority were females (56%). Four themes emerged as the most important characteristics that may influence young people's preferences for HIV self-testing: 1) Cost (i.e. majority of participants noted that they would pay between NGN500 to NGN1,500 naira (USD1.38-USD4.16) for oral HIV self-testing kits); 2) Testing method (i.e. although blood-based sample kits were more popular than oral-based self-testing kits, most preferred the oral-based option due to its perceived benefits and for some, phobia of needles); 3) Access location (i.e. participants suggested they preferred to obtain the HIVST kits from youth-friendly centers, pharmacies, private health facilities, and online stores); and 4) Continuing care and support (i.e. participants highlighted the importance of linkage to care with trained youth health workers for positive or negative test results or toll-free helpline).ConclusionHIV self-testing preferences among Nigerian youth appear to be influenced by several factors including lower cost, less invasive testing method, location of testing, and linkage to care and support post testing. Findings underscore the need to address young people's HIV self-testing preferences as a foundation for implementing programs and research to increase the uptake of HIVST.

Project description:BackgroundAdequate 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.ObjectiveThe purpose of this study was to explore the influence of YWD on young people's self-management during a 12-month period.MethodsA 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.ResultsA 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.ConclusionsThe 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.

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.

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.