A QUALITATIVE EXPLORATION OF CAREGIVER BURDEN, PSYCHOLOGICAL STRESS, AND TREATMENT DISCONTINUATION IN PEDIATRIC MUSCULOSKELETAL DEFORMITIES (CHILDREN AGED 0–9 YEARS)

Abstract

Background:

Juvenile idiopathic arthritis (JIA), clubfoot, scoliosis, arthrogryposis multiplex congenita, and congenital limb deficits are examples of pediatric musculoskeletal malformations that require comprehensive, long-term care and significantly stress on caretakers. While quantitative research has shown caregiver stress and burden in pediatric chronic conditions, there is little qualitative data on caregivers' lived experiences, decision-making processes, and treatment discontinuation in musculoskeletal deformities, especially in children ages 0–9.

Objectives:

To investigate caregivers' lived experiences of psychological stress, caregiver burden, and treatment-related choices (such as adherence and cessation) in children with musculoskeletal abnormalities between the ages of 0 and 9.

Methods:

Semi-structured individual interviews (n = 22) and focus groups (n = 2 FGDs, totaling 12 participants) with primary caregivers of children diagnosed with musculoskeletal abnormalities between the ages of 0 and 9 were used in a qualitative descriptive design. Purposive sampling was used to choose participants from a pediatric orthopedic and rheumatology clinic in Jinnah Post Graduate Medical Centre, BAWS health facility, Farooq e Azam Medical Centre, Karachi, Pakistan, ensuring diversity across conditions, age groups, and socioeconomic circumstances. The Braun and Clarke methodology was followed in the audio recording, verbatim transcription, and thematic analysis of the data using NVivo (version 14). Through member verification, peer debriefing, reflexivity, and audit trails, reliability was guaranteed.

Results

Analysis produced 127 codes, which were divided into 12 sub-themes and three major themes.

Theme 1: caregiver burden

·   Financial pressure (medication expenditures, transportation, equipment)

·   physical strain (fatigue, muscle soreness, sleep disturbance)

·   emotional strain (anxiety, remorse, worry, fear of relapse)

·   social isolation (stigmatization, family disputes, and less social interaction)

theme 2: psychological stress and coping

Depression, anxiety, and emotional exhaustion

coping mechanisms (professional, peer, and family support)

resilience and creating meaning (finding purpose, positive reframing)

theme 3:  treatment adherence and discontinuation

·   obstacles to compliance (expense, travel, lack of assistance)

·   grounds for stopping (expense, perceived lack of effectiveness, fear of negative effects)

·   decision-making and support requirements (need for professional, peer, and guided support)

Burden was defined by caregivers as a multifaceted, cumulative experience. Stress was strongly associated with load, and caregivers reported ongoing anxiety, disturbed sleep, and emotional exhaustion. Treatment cessation was frequently a negotiated choice impacted by both internal concerns (such as side effects and relapse) and exterior obstacles (such as expense and travel).

Conclusion:

This study emphasizes how caregiver stress is multifaceted and how it affects treatment compliance in children with musculoskeletal disorders. High levels of stress are common among caregivers and are frequently associated with financial hardship, social isolation, and relapse anxiety. Emotional and practical obstacles both influence treatment discontinuation. The results have implications for future research (e.g., longitudinal studies, cultural studies, intervention development), policy (e.g., financial aid, access to care, support services), and clinical practice (e.g., caregiver support, psychological therapies, adherence support).