Sara Ahola Kohut

A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness.

Abstract Background: The transition from pediatric to adult health care can be challenging for adolescents with chronic illnesses. As a result, many adolescents are unable to transfer to adult health care successfully. Adequate measurement of transition readiness and transfer satisfaction with disease management is necessary in order to determine areas to target for intervention towards improving transfer outcomes. Objectives: This study aims to systematically review and critically appraise research on transition readiness and transfer satisfaction measures for adolescents with chronic illnesses as well as to assess the psychometric quality of these measures. Methods: Electronic searches were conducted in MEDLINE, EMBASE, CINAHL, PsychINFO, ERIC, and ISI Web of Knowledge for transition readiness and transfer satisfaction measures for adolescents with chronic health conditions. Two reviewers independently selected articles for review and assessed methodological quality. Results: In all, eight readiness and six satisfaction measures met the inclusion criteria, for a total of 14 studies, which were included in the final analysis. None of these measures have well-established evidence of reliability and validity. Most of the measures were developed ad hoc by the study investigators, with minimal to no evidence of reliability and/or validity using the Cohen criteria and COSMIN checklist. Conclusion: This research indicates a major gap in our knowledge of transitional care in this population, because there is currently no well-validated questionnaire that measures readiness for transfer to adult health care. Future research must focus on the development of well-validated transition readiness questionnaires, the validation of existing measures, and reaching consensus on outcomes of successful transfer.

A Mindfulness Program Adapted for Adolescents With Chronic Pain: Feasibility, Acceptability, and Initial Outcomes

Objectives: Pediatric chronic pain is a major health issue that can lead to significant interference in daily functioning. Mindfulness-based interventions (MBI’s), which emphasize acceptance rather than control of pain, have gained increasing attention as a viable treatment option among adults with chronic pain. The effectiveness of MBIs for chronic pain in pediatric populations remains largely unknown. This prospective pre-post interventional study was conducted to examine the feasibility, acceptability, and initial effectiveness of an 8-week group MBI adapted for adolescents (MBI-A) with chronic pain. Materials and Methods: Self-report measures assessing pain characteristics, anxiety, depression, disability, pain catastrophizing, perceived social support, mindfulness, and pain acceptance were administered at baseline, postintervention, and at a 3-month follow-up. In addition, session data were collected to assess each session’s impact on patients’ coping with pain and stress, body awareness, and sense of feeling less alone. Results: In total, 42 consecutive patients in a tertiary care chronic pain clinic met eligibility criteria to participate in the MBI-A group. Of these, 21 participated. A treatment completion rate of 90.5% was observed. Between session mindfulness practice was reported by 77% of participants. Participants were highly satisfied with the MBI-A and all participants reported they would recommend the group to a friend. Improvements in pain acceptance were observed between baseline and the 3-month follow-up, in domains of Pain Willingness and Activity Engagement. Session data revealed improved body awareness and improved ability to cope with stress across sessions. Discussion: The MBI-A is a feasible, well-received intervention for adolescents with chronic pain conditions. Findings support the need for further investigation of the efficacy of MBI-A through randomized-controlled trials.

Sleep problems and associated factors in children with juvenile idiopathic arthritis: a systematic review.

BackgroundSleep problems are common among children with chronic illnesses such as Juvenile Idiopathic Arthritis (or JIA). However, little is known about the frequency and severity of sleep disturbance(s) and the factors that are associated with sleep problems in children with JIA. The mechanism(s) of the relationships characterizing the development or exacerbation of sleep problems in children with JIA are still unknown, however studies have reported an association. The purpose of this study was to synthesize existing research related to sleep problems in children with JIA.MethodsThe Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) statement guided the conduct and reporting of this review. An experienced librarian conducted searches in MEDLINE, EMBASE, PsychINFO, CINAHL, and the Cochrane Central Register of Controlled Trials from inception to January 2012, to identify potentially relevant citations. Two members independently selected, rated methodological quality using the QUIPS tool, and extracted data from included studies.ResultsTen studies were included and findings varied across studies; studies were mostly cross-sectional, or case-controlled designs, with only one cohort study available. Four studies found that children and adolescents diagnosed with JIA had significantly more sleep disturbances when compared to healthy controls. Pain was most often associated with sleep disturbances. The heterogeneous findings highlight the complex relationships between JIA and sleep, and low methodological quality of studies in the field.ConclusionsThis review supports an association between poor sleep and increased symptoms related to JIA, specifically the experience of pain. However, results need to be interpreted cautiously given the inconsistent findings regarding factors associated with sleep problems in JIA, the limited evidence available, and its low quality. Furthermore it is not yet determined if the poor sleep patterns predate the symptoms reported with JIA. More research is vital to understanding the factors that predict or perpetuate poor sleep in children and adolescents diagnosed with JIA.

A qualitative content analysis of peer mentoring video calls in adolescents with chronic illness

This article endeavored to determine the topics of discussion during open-ended peer mentoring between adolescents and young adults living with chronic illness. This study occurred alongside a study of the iPeer2Peer Program. Fifty-two calls (7 mentor–mentee pairings) were audio recorded, transcribed verbatim, and analyzed using inductive coding with an additional 30 calls (21 mentor–mentee pairings) coded to ensure representativeness of the data. Three categories emerged: (1) illness impact (e.g., relationships, school/work, self-identity, personal stories), (2) self-management (e.g., treatment adherence, transition to adult care, coping strategies), and (3) non-illness-related adolescent issues (e.g., post-secondary goals, hobbies, social environments). Differences in discussed topics were noted between sexes and by diagnosis. Peer mentors provided informational, appraisal, and emotional support to adolescents.

Been There, Done That: The Experience of Acting as a Young Adult Mentor to Adolescents Living With Chronic Illness

Objective To explore the perceived benefits and challenges of acting as a young adult peer mentor to adolescents with chronic illness. Methods A qualitative descriptive study, using interviews and a focus group, explored the perceptions of young adult peer mentors following participation in the iPeer2Peer program, a Skype-based peer-mentorship program for adolescents with chronic illness. Interviews and focus group data were transcribed and analyzed using inductive content analysis. Results Ten peer mentors (20.00 ± 1.49 years old, range 17-22 years; diagnosed with chronic pain [n = 4] or juvenile idiopathic arthritis [n = 6]) who mentored four mentees (±2.55 mentees, range = 1-10 mentees) participated. Four main categories were identified: social connection, personal growth, mentor role in mentee growth, and logistics of mentorship. Conclusions Acting as a peer mentor online is a feasible and rewarding experience that supports the mentors own illness self-management, social connection, and personal growth.

Online Peer-to-Peer Mentoring Support for Youth with Hemophilia: Qualitative Needs Assessment

Background To support adolescents through transition from pediatrics to adult care, health care providers and families help teens gain knowledge and develop self-management skills. Peer mentoring can provide meaningful support and has been associated with improved health outcomes in patients with other chronic conditions. Peer mentoring is an appealing way to provide support, but it is imperative to consider the unique needs of adolescents to ensure its success. Objective The objective of our study was to identify the peer mentoring wants and needs of youth with hemophilia in order to guide the development of a new program. Methods In this qualitative study, we interviewed a convenience sample of youth with hemophilia from 2 Canadian hemophilia treatment centers. Two iterative cycles of audiorecorded, semistructured individual interviews were conducted. Descriptive statistics and content analyses were used to organize data into categories that reflected emerging themes. Results In total, we recruited 23 participants aged 12-20 years, with a mean age of 14.91 (2.57) years. When asked about program design, participants weighed the importance of flexibility in delivery (eg, Web-based, in person, text messaging [short message service]), content (eg, structured vs unstructured), frequency of sessions, and length of the program. Participants identified some potential challenges such as scheduling issues, comfort level for disease discussion, and discordant mentor-mentee personality types. The program was viewed as a positive medium for connecting peers with hemophilia. Conclusions Adolescents with hemophilia expressed interest in a peer mentoring program and provided valuable insight that will be applied in the development of a peer mentoring program for youth with hemophilia.

In their own words: developing the Parent Experiences Questionnaire following neonatal brain injury using participatory design

ABSTRACT Primary objective: This study aimed to create a specific questionnaire (Parent Experiences Questionnaire) about early experiences, service involvement, and needs of children and parents following neonatal brain injury that could be used to inform clinical care and needed interventions. Research design and methods: A mixed-method design was utilized, engaging in both qualitative and quantitative methods across three phases. Phase 1 employed participatory design involving 12 parent and clinician participants in semi-structured interviews to address main topics, item importance, and overall impressions of the questionnaire. In phase 2, the questionnaire was piloted by 32 parents. Post hoc revisions added four questions to address current parent and child therapeutic needs in phase 3. Main outcomes and results: The final questionnaire yielded 24 items addressing topics of early communication between parent and clinicians, early intervention services, efficacy, and barriers in optimizing the child’s development and parents’ experience. The questionnaire was reviewed positively by a group of parents in phase 2 and demonstrated good acceptance, online feasibility, stability, and association with current parental mental health and child development. Conclusions: This investigation offers a valuable new questionnaire to inform clinical care regarding discussions with parents about neonatal brain injury, evaluate the perceived efficacy of early intervention services, and guide relevant future intervention efforts.

“I Learned to Let Go of My Pain”. The Effects of Mindfulness Meditation on Adolescents with Chronic Pain: An Analysis of Participants’ Treatment Experience

Chronic pain can lead to significant negative outcomes across many areas of life. Recently, mindfulness-based interventions (MBIs) have been identified as potentially effective tools for improved pain management among adolescents living with pain. This study aimed to explore the experience of adolescents who participated in an eight-week mindfulness group adapted for adolescents with chronic pain (MBI-A), and obtain their feedback and suggestions on group structure and content. A mixed method design was used employing qualitative data from focus groups and data from a satisfaction questionnaire. Focus group data were transcribed and analyzed using inductive simple descriptive content analysis. Of the total participants (n = 21), 90% (n = 19) provided feedback by completing satisfaction questionnaires and seventeen (n = 17) of those also participated across two focus groups. Analysis of the focus group transcripts uncovered six themes: mindfulness skills, supportive environment, group exercises (likes and dislikes), empowerment, program expectations, and logistics. Participants reported positive experiences in the MBI-A program, including support received from peers and mindfulness skills, including present moment awareness, pain acceptance, and emotion regulation. Group members suggested increasing the number of sessions and being clearer at outset regarding a focus on reduction of emotional suffering rather than physical pain.

Changes in Parent Psychological Flexibility after a One-Time Mindfulness-Based Intervention for Parents of Adolescents with Persistent Pain Conditions

Parenting a child with chronic pain can be stressful and impact parent functioning in a variety of areas. Several studies have examined mindfulness-based interventions (MBIs) for parents of children with different health and mental health conditions. However, no studies to date have examined MBIs for parents of children with pain conditions. This study aimed to: (1) determine the feasibility and acceptability of a one-time MBI workshop for parents (n = 34) of adolescents with painful conditions (chronic pain and inflammatory bowel disease) who were participating in a concurrent mindfulness group for adolescents with pain, and (2) examine changes in parent mindfulness and psychological flexibility following the intervention. A mixed-method design was used. In terms of feasibility and acceptability, high recruitment and retention rates were observed, and parents reported high satisfaction scores with the workshop. Changes pre to post intervention showed that dimensions of parent psychological flexibility, but not parent mindfulness, improved following participation in the workshop. Qualitative analyses based on parent responses on a questionnaire uncovered seven themes of parent “takeaways” following participation in the workshop: Mindfulness Skills, Not Alone, Psychological Flexibility, Parent–Child Interactions, Self-Efficacy, Optimism/Positivity/Hope, and Awareness of Values. Taken together, these findings suggest that a one-time MBI workshop offered to parents whose teen was participating in a concurrent mindfulness group for pain is a feasible and promising intervention for parents of children with pain conditions.