Dataset Information

Sustaining, Forming, and Letting Go of Friendships for Young People with Inflammatory Bowel Disease (IBD): A Qualitative Interview-Based Study.

ABSTRACT: Inflammatory bowel disease (IBD) is an incurable, chronic, gastrointestinal condition that can constrain young people's social relationships. Few studies have specifically explored friendships of people with IBD. This qualitative, participatory study used interviews, photographs, and friendship maps to explore friendships and friendship networks of young people with IBD. An online Young Person's Advisory Group was actively engaged throughout the study. Thirty-one young people participated (n = 16 males, n = 15 female; n = 24 Crohn's disease, n = 6 ulcerative colitis, n = 1 IBD-unclassified; the mean age at study was 18.7 years; range 14-25 years). Findings present a metatheme "The importance and meaning of friendships" and three interwoven subthemes of "Sustaining friendships," "Forming new friendships," and "Letting go of friendships." Friendship was important to the young people with IBD, providing support, but associated with challenges such as disclosure. Such challenges could be mitigated by clearer conversations with clinicians about friendships and more extensive conversations about friendships and long-term conditions in education settings.

SUBMITTER: Rouncefield-Swales A

PROVIDER: S-EPMC7487095 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Sustaining, Forming, and Letting Go of Friendships for Young People with Inflammatory Bowel Disease (IBD): A Qualitative Interview-Based Study.

Rouncefield-Swales Alison A Carter Bernie B Bray Lucy L Blake Lucy L Allen Stephen S Probert Chris C Crook Kay K Qualter Pamela P

International journal of chronic diseases 20200903

Inflammatory bowel disease (IBD) is an incurable, chronic, gastrointestinal condition that can constrain young people's social relationships. Few studies have specifically explored friendships of people with IBD. This qualitative, participatory study used interviews, photographs, and friendship maps to explore friendships and friendship networks of young people with IBD. An online Young Person's Advisory Group was actively engaged throughout the study. Thirty-one young people participated (<i>n< ...[more]

PMID: 32953877

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Project description:BackgroundInflammatory bowel disease (IBD), comprising Crohn disease and ulcerative colitis, affects 1 to 3 million people in the United States. Telemedicine has shown promise in IBD. The objective of this study, telemedicine for patients with IBD (TELE-IBD), was to compare disease activity and quality of life (QoL) in a 1-year randomized clinical trial of IBD patients receiving telemedicine versus standard care. Treatment groups experienced improvements in disease activity and QoL, but there were no significant differences between groups. Study adherence to the text-based intervention was less than 80%, the targeted goal.ObjectiveTo understand adherence to remote monitoring, the goal of this qualitative assessment was to obtain TELE-IBD trial participants' perceptions, including their recommendations for future monitoring.MethodsIn this study, patients attending 3 tertiary referral centers with worsening IBD symptoms in the previous 2 years were eligible for randomization to remote monitoring via SMS text messages (short message service, SMS) every other week, weekly, or standard care. Participants (n=348) were evenly enrolled in the treatment groups, and 259 (74.4%) completed the study. For this study, a purposive sample of adherent (N=15) and nonadherent (N=14) patients was drawn from the TELE-IBD trial population. Adherence was defined as the completion of 80% (278/348) or more of the weekly or every other week self-assessments. Semistructured interviews conducted by phone surveyed (1) the strengths and benefits of TELE-IBD, (2) challenges associated with using TELE-IBD, and (3) how to improve the TELE-IBD intervention. Interviews were recorded, professionally transcribed, and coded based on a priori concepts and emergent themes with the aid of ATLAS.ti, version.7 qualitative data analysis software.ResultsParticipants' discussions centered on 3 elements of the intervention: (1) self-assessment questions, (2) action plans, and (3) educational messages. Participants also commented on text-based platform, depression and adherence, TELE-IBD system in place of office visit, and their recommendations for future TELE-IBD systems. Adherent and nonadherent participants prefer a flexible system that is personalized, including targeted education messages, and they perceive the intervention as effective in facilitating IBD self-management.ConclusionsParticipants identified clear benefits to the TELE-IBD system, including obtaining a better understanding of the disease process, monitoring their symptoms, and feeling connected to their health care provider. Participants' perceptions obtained in this qualitative study will assist in improving the TELE-IBD system to be more responsive to patients with IBD.

Project description:OBJECTIVES:To explore the perceptions of Aboriginal Community Controlled Health Service (ACCHS) staff involved in providing mental healthcare to Aboriginal young people of the current and ideal pathways to mental healthcare for urban Aboriginal young people attending ACCHSs, and to identify what additional supports staff may need to provide optimal mental healthcare to Aboriginal young people. DESIGN:Qualitative interview study conducted during May 2016-2017. SETTING:Primary care, at two ACCHSs participating in the Study of Environment on Aboriginal Resilience and Child Health in New South Wales. PARTICIPANTS:Purposive sampling of staff involved in mental healthcare pathways of Aboriginal young people, including general practitioners (GPs), nurses and Aboriginal Health Workers (AHWs). RESULTS:All individuals approached for interview (n=21) participated in the study. Four overarching themes and seven sub-themes were identified: availability and use of tools in practice (valuing training and desire for tools and established pathways), targeting the ideal care pathway (initiating care and guiding young people through care), influencing the care pathway (adversities affecting access to care and adapting the care pathway) and assessing future need (appraising service availability). CONCLUSIONS:Participants desired screening tools, flexible guidelines and training for healthcare providers to support pathways to mental healthcare for Aboriginal young people. Both GPs and AHWs were considered key in identifying children at risk and putting young people onto a pathway to receive appropriate mental healthcare. AHWs were deemed important in keeping young people on the care pathway, and participants felt care pathways could be improved with the addition of dedicated child and adolescent AHWs. The ACCHSs were highlighted as essential to providing culturally appropriate care for Aboriginal young people experiencing mental health problems, and funding for mental health specialists to be based at the ACCHSs was considered a priority.

Project description:Inflammatory Bowel Disease (IBD) describes a group of conditions that includes Crohn's disease and ulcerative colitis. Unlike some chronic conditions, to a greater or lesser extent, IBD is hidden from or invisible to others which enables concealment of the condition, especially when stigma is associated with the condition. Concealment or nondisclosure allows a means of identity management. Disclosure of a chronic condition is not a single event, and it is dependent on many factors. There is little literature that specifically addresses stigma and/or disclosure in relation to children and young people with IBD. An in-depth qualitative study was undertaken, framed by Interpretive Description and using interviews, friendship maps, and photographs within a participatory framework. Public and patient involvement and engagement (PPIE) was undertaken throughout (inception to dissemination) the study. Young people aged 14-25 years with IBD who had participated in the survey phase of the larger study self-selected to participate in interviews that focused broadly on friendship and feelings of social connectedness. Data were analysed using an iterative, interpretive approach. Preliminary themes were developed and these were explored further, and then tentative theoretical connections about friendship were developed. One superordinate theme focused on disclosure. Thirty-one young people (16 males, 15 females, mean age 18.7 years; 24 Crohn's, 7 colitis) participated in the interviews (of these, five created friendship maps and six utilised photographs). Three discrete, but interlinked, themes were generated, revealing young people's experiences of disclosure: to tell or not to tell; controlling the flow: the who, when, what, and how of telling; and reactions and responses to telling: anticipated and actual. Decisions about telling friends about having IBD are challenging for many young people. Having control over disclosure is not always possible, and the potential consequences can feel risky. However, most young people had positive experiences of disclosure and gained support from friends and romantic partners. Most young people downplayed the seriousness of their IBD, revealing some facets of their condition, aiming to sustain their self-identity. Only one young person had been given professional support to disclose. Provision of support and opportunities to discuss whether, when, who, and how to tell friends and what the risks and benefits may be is something that could be woven into an ongoing and wider person-centred dialogue between young people and health professionals within routine clinic visits.

Dataset Information

Sustaining, Forming, and Letting Go of Friendships for Young People with Inflammatory Bowel Disease (IBD): A Qualitative Interview-Based Study.

Publications

Sustaining, Forming, and Letting Go of Friendships for Young People with Inflammatory Bowel Disease (IBD): A Qualitative Interview-Based Study.

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