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.
Keywords
Authors
How to Cite
Download Citation
License
Copyright © 2021 The Author(s)
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License By-NC-ND 4.0 that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See The Effect of Open Access ).
Similar Articles
- Maria Luisa Toro, Yasmin Garcia, Alejandra Manoela Ojeda, David J Dausey, Jon Pearlman, Quantitative Exploratory Evaluation of the Frequency, Causes and Consequences of Rehabilitation Wheelchair Breakdowns delivered at a Paediatric Clinic in Mexico , Disability, CBR & Inclusive Development: Vol. 23 No. 3 (2012): Autumn
- N. Krishna Reddy, Mysore Narasimha Vranda, Efficacy of Family Intervention in Acquired Head-Injury Cases in India , Disability, CBR & Inclusive Development: Vol. 23 No. 3 (2012): Autumn
- Joyce den Besten, Marije Tebogo Cornielje, Huib Cornielje, David Norden Botwey, Supporting Parents in Caring for Children with Disability in Ghana , Disability, CBR & Inclusive Development: Vol. 27 No. 3 (2016): Autumn 2016
- Pravesh Arya, Y V Geetha, Factors related to Recovery and Relapse in Persons with Stuttering Following Treatment: A Preliminary Study , Disability, CBR & Inclusive Development: Vol. 24 No. 1 (2013): Spring
- Muskan Chawla, Surya Narayan Panda, VIKAS KHULLAR, Communication Disorders and Artificial Intelligence: A Short Bibliometric Review , Disability, CBR & Inclusive Development: Vol. 36 No. 4 (2025): Winter Issue
- Sebestina Anita Dsouza, An Integrated Multimodal Intervention of Remedial and Adaptive Approaches in Secondary Dystonia of Hand: A Case Report , Disability, CBR & Inclusive Development: Vol. 24 No. 2 (2013): Summer
- Shyamani Hettiarachchi, Mahishi Ranaweera, R.M.W. Rajapaksha, /t/ before /ʈ/ or /ʈ/ before /t/: Emerging Trends from a Preliminary Study of Consonant Acquisition in Typically developing Sinhala-speaking Children aged 3 to 6 years , Disability, CBR & Inclusive Development: Vol. 32 No. 3 (2021): Autumn 2021
- Danielle Green, Nathan Grills, Methodological Approaches to Researching Organisations of Persons with Disabilities: a Case Study from Uttarakhand, North India , Disability, CBR & Inclusive Development: Vol. 32 No. 3 (2021): Autumn 2021
- Bilal Ahmad Khan, Wakar Amin Zargar, Shabir Ahmad Najar, Negotiating Future Uncertainty: Concerns of Mothers of Children with Down Syndrome in Kashmir, India , Disability, CBR & Inclusive Development: Vol. 29 No. 1 (2018): Spring 2018
- N Janardhan, Shravya Raghunandan, D M Naidu, H Hampanna, Availability and Accessibility of Treatment for Persons with Mental Illness Through a Community Mental Health Programme , Disability, CBR & Inclusive Development: Vol. 22 No. 2 (2011): Autumn
You may also start an advanced similarity search for this article.