Annotated Bibliography
Gerhardt, C., McGoron, K., Thompson, A., Vannatta, K., McNamara, K., Taylor, J., Passo, M., & Noll, R. (2011). Social outcomes among emerging adults with juvenile idiopathic arthritis. Children’s Health Care, 40(1), 70-84. doi:10.1080/02739615.2011.537943
Abstract: This longitudinal study examined social outcomes among young adults with juvenile idiopathic arthritis (JIA) and matched peers during the transition from adolescence to emerging adulthood.
Design: Quantitative.
Methods: Participants included 45 participants with JIA (M = 12.64 years post diagnosis), 46 peers, and their parents.
Results: Young adults in both groups were similar on a variety of outcomes, including social self-concept, social competence, family relationships, friendships, and romantic relationships. In general, disease factors were not associated with adjustment.
Clinical Implications: Interventions to assist social functioning may not be necessary for all children with JIA, but additional research is needed to identify potential subgroups at risk for difficulties.
Khani, M., Ziaee, V., Moradinejad, M., & Parvaneh, N. (2013). The effect of positive family history of autoimmunity in juvenile idiopathic arthritis characteristics: A case control study. Iranian Journal of Pediatrics, 23(5), 569-573. Retrieved from http://library.gcu.edu:2048/login?url=http://search.ebscohost.com.library.gcu.edu:2048/login.aspx?direct=true&db=ccm&AN=2012347719&site=ehost-live&scope=site
Abstract: To compare Juvenile Idiopathic Arthritis (JIA) patients with and without family history of autoimmune disease with respect to clinical features and laboratory data.
Design: Quantitative.
Methods: Sixteen JIA patients with family history of autoimmune disease were identified during study, 32 patients were chosen for comparative group from referred patients to the rheumatology clinic according to the date of referral. Two groups were compared with respect to age of onset, sex, subtype, disease activity, duration of active disease and laboratory variables.
Results: The age of onset was significantly lower in JIA patients with family history of autoimmunity (4.7 years vs. 7.0 years; P=0.02), polyarthicular subtype was more frequent in patients with positive family history (50% vs.25%; P=0.04) most of JIA patients with positive family history were in the active phase at the time of study (64% vs 25%; P=0.02) and had a longer duration of active disease (21.0 months vs 12.3 months; P=0.04). Patients with positive family history had more positive ANA (43.5%% vs 12.5%; P=0.01) and also more positive ADA (75% vs 20.8%; P=0.002). Two groups were similar according to sex, and other laboratory variables.
Clinical Implications: JIA patients with family history of autoimmune disease seem to have a more severe disease than patients without such family history, they are younger at the onset, and have mostly poyarthicular subtype. They also have more ANA and ADA positivity. These findings are different from familial JIA case-control studies according to active disease duration, subtype, and ANA positivity.
Sansom-Daly, U., Wakefield, C., Peate, M., & Bryant, R. (2012). A systematic review of psychological interventions for adolescents and young adults living with chronic illness. Health Psychology, 31(3), 380-393. doi:10.1037/a0025977
Abstract: There is increasing recognition that adolescents and young adults (AYAs) with chronic illnesses experience common psychological challenges. This article reviewed published psychological interventions for AYAs with cancer, diabetes, juvenile idiopathic arthritis, sickle cell disease, and asthma. Common, efficacious intervention components were examined to generate clearer recommendations for future age-appropriate, evidence-based intervention development.
Design: Quantitative.
Methods: Five databases including MEDLINE, MEDLINE In Process & Non-Indexed Citations, PsycINFO, EMBASE, and CINAHL, were searched for studies involving AYAs aged 10-30 years, using quantitative two-group methods, published from 1979-2010. Of 1,233 abstracts, 87 were extracted for further analysis and a final 25 studies were eligible for inclusion. Thirteen of these studies included AYAs with diabetes, 7 studies involved AYAs with cancer, and 5 included AYAs with other illnesses.
Results: Educational interventions showed some significant positive results, particularly when targeted knowledge outcomes were measured. Several skills-based programs, some including parents, showed positive results, with moderate effect sizes. Interventions which taught communication skills, incorporated practical components (e.g., role-plays, homework), involved ≥6 sessions, and spanned at least 3 months in length, appeared more likely to achieve positive outcomes.
Clinical Implications: Skills-based interventions delivered over multiple sessions may yield the most positive results in AYAs with chronic illness. Given the few peer-support groups eligible for review, their efficacy remains unclear. This review points to the need for intervention development that teaches adaptive coping skills, is grounded in theoretical frameworks, and adheres to strict randomization and independent assessments to evaluate efficacy in assisting AYAs adjust to chronic illness.
Thon, A., & Ullrich, G. (2010). Disease impact and disease-unrelated strain in parents of children with rheumatic disease: Is there an influence on disease-related information needs?. Disability & Rehabilitation, 32(2), 134-141. doi:10.3109/09638280903056868
Abstract: To explore the information needs of parents of children with juvenile idiopathic arthritis and other rheumatic diseases with emphasis on possible intervening factors, such as disease-related or disease-unrelated strain.
Design: Qualitative.
Methods: A cross-sectional, anonymous survey using a purpose-designed questionnaire, incorporating, among others, the Impact on Family Scale. The questionnaire was sent to 146 families continuously attending a pediatric rheumatology outpatient clinic. The response rate was 80%. The mean age of the children was 6.9 (±4.3) years. Mean CHAQ score was 0.259 (±0.45; range 0.0 to 2.13).
Results: Parents considered themselves well-informed. They frequently mentioned having received information on core domains of medical aspects. They described deficits related to psychosocial impact, to vocational education and to complementary therapy. However, their interest in further information was high, almost irrespective of the amount of prior information. Unexpectedly, neither disease impact on the family nor the presence and number of disease-unrelated life events seemed to have an influence (positive or negative) on the parents' information needs.
Clinical Implications: With respect to individually tailored information strategies, it should be taken into account that even for topics largely covered by usual medical advice, residual interest and information needs remain high. We were furthermore able to ascertain topics of particular interest but failed to substantiate our clinical impression that families who feel burdened with disease-related and or disease-unrelated stressors are less likely to be interested in further disease-related information.
Vuorimaa, H., Tamm, K., Honkanen, V., Komulainen, E., Konttinen, Y., & Santavirta, N. (2011). Pain in juvenile idiopathic arthritis - a family matter. Children's Health Care, 40(1), 34-52. doi: doi:10.1080/02739615.2011.537937
Abstract: The purpose of this study was to identify the associations between parental and child psychosocial factors and pain in juvenile idiopathic arthritis (JIA).
Design: Qualitative.
Methods: The sample comprised 142 patients with JIA and the attending parent. Explorative factor analysis was used to identify higher-order factors reflecting the interaction between the parent (parental anxiety and depressive symptoms, parental illness management, and parental self-efficacy) and child (trait anxiety, depression, functional disability, pain, and self-efficacy) variables. Linear multiple regression analysis was used to investigate the extent to which these common factors might account for variance in the levels of pain experienced by children diagnosed with JIA.
Results: One of the higher-order factors comprised both parental and child variables. This and two additional factors were uniquely associated with the children's pain reports in the regression analysis.
Clinical Implications: Research and clinical implications are discussed in light of the findings of the study.