"Imagine, holding hands with your 3-year-old hurts too much?" Lived experience of individuals parenting with inflammatory arthritis: a qualitative evidence synthesis.

PURPOSE: Inflammatory Arthritis (IA) is an autoimmune condition that significantly impacts parenting roles. Limited research has specifically examined parenting within the context of IA. This qualitative evidence synthesis (QES), a systematic review of qualitative research, aimed to develop a comprehensive understanding of how IA shapes parenting experiences.

METHODS

A Qualitative Evidence Synthesis (QES) included primary qualitative studies of parents with IA caring for children (0-21 years). Data were analysed using the Person-Environment-Occupation-Performance (PEOP) model, with occupational impacts and strategies mapped to the Parenting Occupations and Purposes (POP) framework. Methodological quality was appraised using the CASP checklist, and confidence in findings assessed with GRADE-CERQual.

RESULTS

Thirty-eight studies involving a minimum of 190 parents were synthesised. Six person-related themes emerged: (i) physical capacity, (ii) mental health, (iii) identity, (iv) future, (v) adaptive self-management, and (vi) psychosocial impact. Environment-focused themes included (i) social, (ii) physical, (iii) healthcare/statutory, and (iv) cultural. Parents reported challenges across all ten POP domains, from basic care to supporting social, emotional, and educational development, though research primarily focused on parents of young children. Adaptive strategies included environmental modifications, task modification, pacing, planning, and reliance support networks.

CONCLUSIONS

IA affects all domains of parenting. Findings emphasise the need for occupation-focused, family-centred, multidisciplinary care.