Dataset Information

Transition from child to adult care in an outpatient clinic for adolescents with juvenile idiopathic arthritis: An inductive qualitative study.

ABSTRACT:

Aim

The aim of this study was to investigate experiences and needs in the transition from child to adult care in an outpatient clinic from the perspective of adolescents with juvenile idiopathic arthritis and their parents focusing on which aspects in the transition could ease the process.

Design

A qualitative design with an inductive approach.

Methods

Inductive content analysis was used to analyse individual interviews with three parents and three adolescents from a rheumatology clinic in Denmark.

Results

Three descriptive categories emerged: "Information during transition," "Personalized care" and "A change of roles." The comparative analysis of the categories revealed two explanatory themes: "To move from something known to something unknown" and "To develop and change." We found that preparation for transition, information of organisational and procedural changes when entering adult care, continuity and relationships with health professionals characterised by trust as well as involvement of adolescents and parents will ease the process of transition.

SUBMITTER: Raunsbæk Knudsen L

PROVIDER: S-EPMC6177547 | biostudies-literature | 2018 Oct

REPOSITORIES: biostudies-literature

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Publications

Transition from child to adult care in an outpatient clinic for adolescents with juvenile idiopathic arthritis: An inductive qualitative study.

Raunsbæk Knudsen Line L de Thurah Annette A Bjerrum Merete M

Nursing open 20180531 4

<h4>Aim</h4>The aim of this study was to investigate experiences and needs in the transition from child to adult care in an outpatient clinic from the perspective of adolescents with juvenile idiopathic arthritis and their parents focusing on which aspects in the transition could ease the process.<h4>Design</h4>A qualitative design with an inductive approach.<h4>Methods</h4>Inductive content analysis was used to analyse individual interviews with three parents and three adolescents from a rheuma ...[more]

PMID: 30338100

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Project description:BackgroundThe increase in therapeutic options for juvenile idiopathic arthritis (JIA) has added complexity to treatment decisions. Shared decision making has the potential to help providers and families work together to choose the best possible option for each patient from the array of choices. As part of a needs assessment, prior to design and implementation of shared decision making interventions, we conducted a qualitative assessment of clinicians' current approaches to treatment decision making in JIA.MethodsPediatric rheumatology clinicians were recruited from 2 academic children's hospitals affiliated with a quality improvement learning network, using purposive and snowball sampling. Semi-structured interviews elicited how clinicians with prescribing authority (n?=?10) interact with families to make treatment decisions. Interviews were audio-recorded and transcribed verbatim. A multi-disciplinary research team used content analysis to analyze the interview data.To validate data from individual interviews and enrich our understanding, we presented the interview results to pediatric rheumatology clinicians attending a learning network meeting (n?=?24 from 12 children's hospitals). We then asked the clinicians questions to further identify and discuss areas of variation in the decision-making processes.ResultsClinicians described a decision-making process in which they, rather than the family or other care team members, consistently initiated treatment decisions. Initial treatment options presented to families generally reflected the clinician's preferred treatment approaches, which differed across clinicians. Clinicians used various methods to inform families about treatment options and tailor information according to perceptions of a family's information needs, level of comprehension or mood (e.g. anxiety). The attributes of medication presented to families fell into 4 categories: benefits, risks, logistics and family preferences. Clinicians typically included family members in the decision to initiate JIA treatment after limiting the options to fit the clinical situation and the clinician's own preferences. Family members' preferences were seen as more integral in the decision to stop treatment after symptom remission.ConclusionsDecision making about initial JIA treatment appears to be largely driven by clinician preferences. Family preferences are more likely to be considered for treatment discontinuation. Opportunities exist to develop, test, and implement tools to facilitate shared decision making in pediatric rheumatology.

Project description:BackgroundAdolescents with Juvenile Idiopathic Arthritis (JIA) are at risk for physical, emotional, social and role challenges that negatively impact quality of life. Peer mentoring has been shown to improve positive health behaviours in adolescents with chronic disease while simultaneously providing social support. The objectives of this paper are to examine the feasibility and acceptability of an online peer mentoring program (iPeer2Peer Program) for adolescents with JIA.MethodsThe iPeer2Peer program was examined using a waitlist pilot randomized control trial (RCT). Participants were randomly allocated to the intervention or wait-list control group via a secure, web-based randomization service. Health care providers and investigators were blinded to participant group allocation. Trained peer mentors (16-25 years; successfully managing their JIA) were matched to participants (12-18 years; diagnosed with JIA) randomized to the intervention group to provide peer support and education for effective self-management of JIA. Participant-mentor pairings connected ten times over 8 weeks using Skype video calls. Primary outcomes focused on implementation (i.e. measures of feasibility and acceptability). Secondary outcomes focused on effectiveness (i.e. measures of self-management, self-efficacy, pain, social support and quality of life).ResultsThirty adolescents (mean age 14.3 ± 1.7 years, 97 % female) completed the RCT (intervention n = 16, control n = 14).Primary outcomesOne third (32 %) of adolescents approached agreed to participate, completed baseline measures and were randomized. Half of pairings completed ten calls within 8 weeks. Average call length was twice the required amount with call lengths of 44.72 ± 15.76 min. Participants reported satisfaction with the program and all reported that they would recommend it to their peers. Participants' mean engagement level with the program was 8.53/10 (range = 7-10).Secondary outcomesParticipants who completed the iPeer2Peer Program demonstrated improvements in their perceived ability to manage JIA (p < 0.04), compared to controls. No adverse events were reported.ConclusionThe iPeer2Peer Program is a promising intervention that improves acceptability of self-management and peer support treatments for adolescents with JIA. By using the Internet to connect mentors to adolescents with JIA it may also improve accessibility to these resources. Findings will be used to adapt the program and refine the methodology for a full-scale RCT.Trial registrationClinicalTrials.gov Identifier: NCT01986400 . Registered November 11, 2013.

Dataset Information

Transition from child to adult care in an outpatient clinic for adolescents with juvenile idiopathic arthritis: An inductive qualitative study.

Aim

Design

Methods

Results

Publications

Transition from child to adult care in an outpatient clinic for adolescents with juvenile idiopathic arthritis: An inductive qualitative study.

Similar Datasets

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