Perspectives of Caregivers on Pubertal Changes among Young Adolescent Girls with Cerebral Palsy: a Qualitative Analysis

Purpose: Girls with cerebral palsy have limited capacity to cope with pubertal issues. It results in their parents being burdened with additional caregiving during this period. A qualitative study was undertaken among parents of girls with cerebral palsy to understand the caregivers’ challenges and concerns. Method: Twenty-one interviews were conducted among purposively selected parents and caregivers of young adolescent girls with cerebral palsy in a tertiary care referral hospital in South India. The interview questions were related to menstrual hygiene, behavioural changes around puberty, fear of sexual abuse, and perceptions about contraception. Transcripts were coded and, after data anonymisation, manual thematic analysis was done using an inductive approach. Results: A total of 6 themes emerged, related to identification of problems, treatment-seeking patterns of the caregivers, social support and perspectives on contraception, pubertal challenges and concerns of parents for the future of their girls.  Caregivers reported that puberty in girls with cerebral palsy places an additional burden on the caregivers. They were also worried about the safety of their girl children. Contraception and menstrual suppression were not considered as options. Caregivers wanted education and financial independence for their children. Conclusion: Awareness of methods of managing pubertal issues, shared caregiving responsibility by the family, and customised approach for healthcare interventions are of paramount importance in helping caregivers deal with the transition to puberty by girls with cerebral palsy. Family counselling and therapy can help to allay the parents’ fears, worries and tensions.