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

Arathi P Rao , Hitesh Shah , Shyamala Guruvare , Manisha Gore , Kesavan Rajasekharan Nayar , Bindhya Vijayan
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DOI: https://doi.org/10.47985/dcidj.465
Submitted: 2021-01-27 07:14:32
Published: 2021-10-26

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

Cerebral palsy menstruation caregivers contraception developmental disorders puberty

Authors

Arathi P Rao

Dr. Arathi Prahallada Rao is the Coordinator of the Master of Public Health Programme at Prasanna School of Public Health, Manipal Academy of Higher Education, Manipal, India. She is a gynaecologist and maternal child health specialist by training and her area of interest is adolescent health. She obtained a Ph.D. for a doctoral study on gynaecological issues among girls with cerebral palsy. Currently, she is pursuing post-doctoral research on women with cardiac diseases and their access to cardiac care during the COVID-19 pandemic in a coastal district of India.

Hitesh Shah

Dr. Hitesh Shah is a Professor in Orthopedics at Kasturba Medical College, Manipal. He is incharge of the cerebral palsy clinic at Kasturba Hospital, Manipal, India. His area of practice and research is  pediatric orthopaedics with a special focus on developmental delays among children with skeletal defects and disabilities. He has guided several students in thier Masters' thesis, as well as doctoral research.

Shyamala Guruvare
Manisha Gore
Dr. Manisha Gore is an Assistant Professor at Faculty of Health Sciences, Symbiosis International Deemed University, Pune, India. She is a trained qualitative researcher with several publications on health issues. She has guided student and faculty research on qualitative research methods. She is also an Adjunct Faculty at Prasanna School of Public Health, Manipal Academy of Higher Education, Manipal, India.
Kesavan Rajasekharan Nayar
Professor K Rajasekharan Nayar is Principal, Global Institute of Public Health, Trivandrum, Kerala, India.  His research interests are Health system Research, Health Programs, Health Sector Reforms, Social Determinants of health including studies on exclusion and discrimination in health.  He was involved in studies on mass gatherings, public health vaccine hesitancy and the role of social media. He published several papers on the recent COVID-19 pandemic in international journals.
Bindhya Vijayan
https://orcid.org/0000-0003-2608-8533
Dr. Bindhya Vijayan is a Public Health professional. Currently, she is engaged in ‘Domestic workers in South India and North East – a situational analysis from dignity and right perspectives’ by National Human Rights Commission. She was involved in the following studies on COVID-19 deaths in Tamil Nadu state, India: Social media messages on COVID-10, qualitative research on cough among general population of Kerala, qualitative study on nonagenarian population from two districts of Kerala and impact of COVID-19 on adolescent health: preliminary evidences from the Southern State of Kerala, India.

How to Cite

Arathi P Rao, Hitesh Shah, Shyamala Guruvare, Manisha Gore, Kesavan Rajasekharan Nayar, Bindhya Vijayan (2021-10-26). Perspectives of Caregivers on Pubertal Changes among Young Adolescent Girls with Cerebral Palsy: a Qualitative Analysis. Disability, CBR & Inclusive Development, Vol. 32 No. 3 (2021): Autumn 2021, 76-90. https://doi.org/10.47985/dcidj.465

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