The parents of children with juvenile idiopathic arthritis have been identified as pivotal facilitators of children's involvement in treatment regimens, including home exercise programmes. As such, parents' perspectives regarding the factors that influence participation in their children's treatment regimens, and in particular home exercise programmes, are addressed in this study. In depth, semi-structured interviews were conducted with 16 families. Rigour was ensured through a rich description of participants, peer and member checking, field journals and audit trails.
Four key topics related to the process — the experience of the child's diagnosis, community access and participation, treatment regimens and the impact of these regimens on the parent's roles and relationships — and were addressed. Seven key themes emerged, namely the difficult process of diagnosis, the emotional toll, medications, exercises, life revolves around arthritis, parents' relationship with their child and other family members, and parents and paid work. The implications for clinical practice and future research are discussed.
AkikusaJDAllenRC (2002) Reducing the impact of rheumatic diseases in childhood. Best Practice and Research Clinical Rheumatology, 16 (3), 333–45.
2.
AprilKTFeldmanDEPlattRWDuffyCM (2006a) Comparison between children with juvenile idiopathic arthritis and their parents concerning perceived treatment adherence. Arthritis and Rheumatism (Arthritis Care and Research), 55 (4), 558–63.
3.
AprilKTFeldmanDEPlattRWDuffyCM (2006b) Comparison between children with juvenile idiopathic arthritis (JIA) and their parents concerning perceived quality of life. Quality of Life Research, 15, 655–61.
4.
AvisM (2005) Is there an epistemology for qualitative research? In: HollowayI, ed. Qualitative research in health care. Maidenhead: Open University Press, 1–15.
5.
BarlowJHarrisonKShawK (1998) The experience of parenting in the context of juvenile chronic arthritis. Clinical Child Psychology and Psychiatry, 3 (3), 445–63.
6.
BrittonCMooreA (2002) Views from the inside, part 3: how and why families undertake prescribed exercise and splinting programmes and a new model of the families' experience of living with juvenile arthritis. British Journal of Occupational Therapy, 65 (10), 453–60.
7.
CakmakABolukbasN (2005) Juvenile rheumatoid arthritis: physical therapy and rehabilitation. Southern Medical Journal, 98 (2), 212–16.
8.
CookJV (2001) Qualitative research in occupational therapy. In: CookJV, ed. Qualitative research in occupational therapy. Albany, NY: Delmar Thomson Learning, 1–10.
9.
CushJJKavanaughASteinCM (2005) Rheumatology: diagnosis and therapeutics. 2rd ed.Sydney: Lippincott Williams and Wilkins.
10.
De MonteRBroderickSJonesFRodgerS (2009) Living with juvenile idiopathic arthritis: participation in home exercise programmes from the children's perspectives. British Journal of Occupational Therapy, 72, in press.
11.
FeldmanD EhrmannDe CivitaMDobkinPLMallesonPNMeshefedjianGDuffyCM (2007) Effects of adherence to treatment on short-term outcomes in children with juvenile idiopathic arthritis. Arthritis Care and Research, 57 (6), 905–12.
12.
FrankRGHagglundKJSchoppLHThayerJFViethAZCassidyJTGoldsteinDEBeckNCClayDLHewettJEJohnsonJCChaneyJMKashaniJH (1998) Disease and family contributors to adaptation in juvenile rheumatoid arthritis and juvenile diabetes. Arthritis Care and Research, 11 (3), 166–76.
13.
GajdosikCGCampbellSK (1991) Effects of weekly review, socioeconomic status, and maternal belief on mothers' compliance with their disabled children's home exercise program. Physical and Occupational Therapy in Pediatrics, 11 (2), 47–65.
14.
HackettJ (2003) Perceptions of play and leisure in junior school aged children with juvenile idiopathic arthritis: what are the implications for occupational therapy?British Journal of Occupational Therapy, 66 (7), 303–10.
15.
HoferMSouthwoodTR (2002) Classification of childhood arthritis. Best Practice and Research Clinical Rheumatology, 16 (3), 379–96.
16.
JerrettMD (1994) Parents' experience of coming to know the care of a chronically ill child. Journal of Advanced Nursing, 19, 1050–56.
17.
KlepperSEDarbeeJEffgenSKSingsenBH (1992) Physical fitness levels in children with polyarticular juvenile rheumatoid arthritis. Arthritis Care and Research, 5 (2), 93–100.
18.
KreftingL (1991) Rigor in qualitative research: the assessment of trustworthiness. American Journal of Occupational Therapy, 45 (3), 214–22.
19.
KyngäsH (2000) Compliance of adolescents with rheumatoid arthritis. International Journal of Nursing Practice, 6, 261–67.
20.
NovakICusickA (2006) Home programmes in paediatric occupational therapy for children with cerebral palsy: where to start?Australian Occupational Therapy Journal, 53, 251–64.
21.
PattonMQ (2002) Qualitative research and evaluation methods. 3rd ed.Thousand Oaks, CA: Sage.
22.
RavelliAViolaSMigliavaccaDPistorioARupertoNMartiniA (2001) Discordance between proxy-reported and observed assessment of functional ability of children with juvenile idiopathic arthritis. Rheumatology, 40, 914–19.
RodgerS (2006) Children and families. In: McKennaKTToothLR, eds. Client education: a partnership approach for health practitioners. Sydney: University of New South Wales Press, 89–111.
26.
RogersSL (2005) Common conditions that influence children's participation. In: Case-SmithJ, ed. Occupational therapy for children. 5th ed.St Louis, MO: Elsevier Mosby, 171–72.
27.
Rone-AdamsSASternDFWalkerV (2004) Stress and compliance with a home exercise program among caregivers of children with disabilities. Pediatric Physical Therapy, 16, 140–48.
28.
SawyerMGWhithamJNRobertonDMTaplinJEVarniJWBaghurstPA (2004) The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis. Rheumatology, 43 (3), 325–30.
29.
SchanbergLEAnthonyKKGilKMMaurinEC (2003) Daily pain and symptoms in children with polyarticular arthritis. Arthritis and Rheumatism, 48 (5), 1390–97.
30.
ShawKLSouthwoodTRMcDonaghJE (2006) Growing up and moving on in rheumatology: parents as proxies of adolescents with juvenile idiopathic arthritis. Arthritis and Rheumatism (Arthritis Care and Research), 55 (2), 189–98.
31.
Singh-GrewalDWrightVBar-OrOFeldmanBM (2006) Pilot study of fitness training and exercise testing in polyarticular childhood arthritis. Arthritis and Rheumatism (Arthritis Care and Research), 55 (3), 364–72.
32.
SmithJ (1995) Semi-structured interviewing and qualitative analysis. In: SmithJHarreRVan LangenhoveL, eds. Rethinking methods in psychology. London: Sage, 9–26.
33.
SolariNViolaSPistorioAMagni-ManzoniSVitaleRRupertoNUllmannNFilocamoGMartiniARavelliA (2008) Assessing current outcomes of juvenile idiopathic arthritis: a cross-sectional study in a tertiary center sample. Arthritis Care and Research, 59 (11), 1571–79.
34.
TakkenTVan der NetJHeldersPJ (2001) Methotrexate for treating juvenile idiopathic arthritis. Cochrane Database Systematic Review, 4, CD003129.
35.
TaylorSBogdanR (1998) Introduction to qualitative research methods. New York, NY: Wiley.
36.
TimkoCBaumgartnerMMoosRHMillerJJ (1993) Parental risk and resistance factors among children with juvenile rheumatic disease: a four-year predictive study. Journal of Behavioural Medicine, 16 (6), 571–88.
37.
TodresL (2005) Clarifying the life-world: descriptive phenomenology. In: HollowayI, ed. Qualitative research in health care. Maidenhead: Open University Press, 104–22.
38.
VarniJWWallanderJL (1984) Adherence to health-related regimens in pediatric chronic disorders. Clinical Psychology Review, 4, 585–96.
39.
WilliamsonGMWaltersASShafferDR (2002) Caregiver models of self and others, coping, and depression: predictors of depression in children with chronic pain. Health Psychology, 2 (4), 405–10.
