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Focus groups for developing a peer mentoring program to improve self-management in pediatric inflammatory bowel disease.

ABSTRACT: Inflammatory bowel disease (IBD) presents challenges for self-management in many areas. A peer mentoring program may offer advantages over other forms of self-management interventions because youth may be more receptive to learning self-management skills from a peer than from a parent or professional. The purpose of the present study was to identify themes from focus groups to inform development of a peer mentoring program for improving self-management in pediatric IBD.Focus groups were conducted for youth ages 12 to 17, stratified by age (3 groups; n = 14), young adults ages 18 to 20 (1 group; n = 5), and parents of the youth (3 groups; n = 17). Broad questions covered program goals, general program characteristics, mentor/mentee characteristics, and family involvement, and transcriptions were analyzed via directed content analysis, with the a priori codes specified as the broad questions above.Participants identified the primary goals of a program as support, role model, information/education, and fun. They described a program that would include a year-long, 1-on-1 mentor relationship with a peer who has had IBD for at least a year, educational group activities, fun activities that are not focused on IBD, expectations for in-person contact 1 to 2 times per month, and mentor-to-mentor and parent support.Many of the suggestions from the focus groups correspond with research findings associated with successful mentoring programs. Using participants' suggestions and empirically based best practices for mentoring may result in an effective peer mentoring program for improving self-management in youth with IBD.

SUBMITTER: Mackner LM

PROVIDER: S-EPMC4174987 | biostudies-literature | 2014 Oct

REPOSITORIES: biostudies-literature

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Focus groups for developing a peer mentoring program to improve self-management in pediatric inflammatory bowel disease.

Mackner Laura M LM Ruff Jessica M JM Vannatta Kathryn K

Journal of pediatric gastroenterology and nutrition 20141001 4

<h4>Objectives</h4>Inflammatory bowel disease (IBD) presents challenges for self-management in many areas. A peer mentoring program may offer advantages over other forms of self-management interventions because youth may be more receptive to learning self-management skills from a peer than from a parent or professional. The purpose of the present study was to identify themes from focus groups to inform development of a peer mentoring program for improving self-management in pediatric IBD.<h4>Met ...[more]

PMID: 24979662

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Project description:BackgroundChildhood cancer survivors require lifelong risk-based follow-up care. It should be noted that less than one-third of adult survivors of childhood cancer report any survivor-focused care, and fewer than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to inadequate transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care. Interventions that focus specifically on improving the transition from parent-managed to self-managed care are needed. Theory and prior research suggest that targeting self-management skills and using peer mentoring may be innovative strategies to improve transition readiness.ObjectiveThis study aims to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors.MethodsIntervention development occurred in 3 stages: formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care, content development using feedback from multiple stakeholders (AYA survivors, parents, and providers), and content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the social-ecological model of AYA readiness for transition, was used to identify themes and develop and refine the content for the intervention.ResultsA total of 19 AYA survivors participated in the formative research stage, and 10 AYA survivors, parents, and health care providers participated in the content development and refinement stages. The major barrier and facilitator themes identified included knowledge of cancer history and risks; relationships with health care providers; relationships with family members involved in care; emotions about health, follow-up care, and transfer of care; and lifestyle behaviors and life transitions. These themes were translated into 5 self-management modules: understanding treatment history and the survivorship care plan, managing health care logistics and insurance, communicating with health care providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Feedback from the key stakeholders indicated that the content was relevant but should include participative elements (videos and tailored feedback) to make the intervention more engaging. The AYA survivors were receptive to the idea of working with a peer mentor and expressed a preference for using SMS text messaging, telephone calls, or videoconference to communicate with their mentor.ConclusionsIncorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer-mentoring intervention. AYA survivors confirmed the important targets for the intervention and facilitated design decisions in line with our target users' preferences. The next step will be to conduct a single-arm trial to determine the feasibility and acceptability of the proposed intervention among AYA survivors of childhood cancer.

Project description:BackgroundEating disorders (EDs) are serious psychiatric illnesses that have high rates of morbidity and mortality, and low long-term recovery rates. Peer mentor programs (PMPs) have been associated with reduced psychiatric hospitalisation and shorter lengths of stay for those with other severe mental illnesses. The present study evaluated the feasibility and preliminary efficacy of a PMP for individuals with EDs in improving symptomatology and quality of life.MethodsThirty mentees and seventeen mentors were recruited. The PMP involved thirteen sessions over 6 months. Participants completed measures assessing ED symptomatology, quality of life (QoL), mood and perceived disability. Changes in symptomatology before and after the PMP were tested by Wilcoxon signed rank tests. Semi-structured interviews were conducted for qualitative evaluation of the PMP.ResultsThe program was deemed to have moderate feasibility with eight of 30 mentees, and two of 17 mentors withdrawing. Completion rates ranged from 2 to 16 sessions, and between 3 and 45 weeks. Mentees demonstrated improvements in body mass index, QoL, ED symptomatology, mood (depression, anxiety and tension/stress) and perceived disability from pre- to post-program. Mentors demonstrated significant increases in ED symptomatology, but no worsening of QoL, mood or perceived disability. Qualitative findings from both mentees and mentors were positive: emergent themes included hope for recovery, a sense of agency and inspiration gained from interaction with someone with lived experience of an ED.ConclusionsThis pilot study suggests feasibility of the PMP for individuals with EDs. Mentees demonstrated improvements in ED symptomatology, QoL, mood and perceived disability. However, the increase in ED symptomatology reported by the mentors over the PMP highlights potential risks and the need for thorough monitoring while preliminary evaluation is undertaken. The mentoring relationship was a positive experience for both mentees and mentors, instilling an increased hope for recovery in mentees and an opportunity for mentors to reflect on their own recovery with increased confidence. The novel relationship formed throughout mentorship highlights a potential gap in current clinical support services, which warrants further exploration within a controlled trial.Trial registrationAustralian and New Zealand Clinical Trials Registration Number: ACTRN12617001412325. Retrospectively registered: 05/10/2017. Date of first enrolment: 20/01/2017. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373741&isReview=true.

Project description:IntroductionThe Food and Drug Administration (FDA) selected six text-only warnings for cigarillos to be implemented on packaging and advertising. Pictorial warnings are more effective at discouraging cigarette use than text-only warnings, yet no research exists for cigarillos. We sought to understand what types of images might be most effectively paired with the cigarillo text warnings to inform broad principles for developing pictorial warnings, with a focus on young adults, who have the highest rate of cigarillo use.MethodsWe conducted five focus groups with a total of N = 30 young adult cigarillo users and susceptible nonusers (53% female, 50% White, and 33% Black). Participants were shown four to eight unique images for each of the six text statements and were asked about visual-verbal congruency, emotional and cognitive reactions, and perceived effectiveness of each image. Sessions were recorded and transcribed; two investigators independently coded transcripts for emergent themes.ResultsParticipants reported images that were graphic or "gross" would best grab attention and discourage use of cigarillos. Participants preferred images that were a direct illustration of the information in the warning text, rather than abstract images that required more cognitive effort to understand. Participants also highlighted that including people in the images, especially youth and young adults making eye contact, helped them relate to the warnings, garner their attention, and positively influence their reactions.ConclusionsWe identified several principles to inform the selection of images to pair with the FDA-required cigarillo text statements. These insights may also apply to pictorial warnings for other tobacco products.ImplicationsThis focus group study identified principles for selecting images to develop pictorial warnings for the six FDA text-only cigarillo warnings. We found that young adult cigarillo users and susceptible nonusers preferred images that were graphic and gross, believable, congruent to the warning text, and included people. Images that match young adults' visual expectations of a disease and are emotion-provoking may be most effective in pictorial warnings and highlight challenges for developing pictorial warnings for health effects that do not have a visible health consequence.

Dataset Information

Focus groups for developing a peer mentoring program to improve self-management in pediatric inflammatory bowel disease.

Publications

Focus groups for developing a peer mentoring program to improve self-management in pediatric inflammatory bowel disease.

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