Parental management of autoimmune disease with complementary and alternative medicine: a scoping review of the literature in OECD countries

Introduction: The prevalence of autoimmune disease (AD) is increasing in both paediatric and adult populations, resulting in a rise in healthcare utilisation for symptom management. With no known cure for ADs, management options include conventional medical treatment and/or complementary and alternative medicine (CAM) approaches. Despite the high cost of CAM therapy in Australia, its use continues to rise, especially among adults and children with chronic disease. Methods: This review was guided by the JBI methodology for scoping reviews. We reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist. Database searched included OVID (Medline, Embase, PsycInfo) CINAHL, Scopus, Web of Science, ProQuest, and Google Scholar. Only primary empirical papers were included. Screening and data extraction were conducted by two reviewers independently with a third reviewer resolving discrepancies. Results: Our review identified 42 primary research papers published between 1990 and 2021 that addressed parental management of AD with CAM. Commonly reported CAM practices included massage, homeopathy, chiropractic care, and acupuncture, with vitamins and minerals being the most frequently mentioned CAM products. Parents cited dissatisfaction with conventional medication, concerns about its side effects, and the perception of CAM as natural or safer than conventional medicine as primary reasons for CAM use. Parental CAM use strongly predicted child CAM use, yet there was low disclosure of CAM practices to conventional physicians. Reasons for non-disclosure included concerns about negative responses from physicians and perceptions of limited physician understanding of CAM. Parental educational level and family income were also predictive of CAM use. Conclusions: This review highlights the widespread use of CAM by parents managing their children's AD and emphasises the need for improved communication between parents and healthcare providers. Methodological inconsistencies highlight the necessity for standardised protocols in future CAM research. Additionally, future studies should recognise the interplay between social structures and individual agency in shaping healthcare decisions.