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

Authors

  • Arathi P Rao Prasanna School of Public Health
  • Hitesh Shah Kasturba Medical College, Manipal Academy of Higher Education
  • Shyamala Guruvare Kasturba Medical College, Manipal Academy of Higher Education, Manipal, Karnataka
  • Manisha Gore Symbiosis International University
  • Kesavan Rajasekharan Nayar Chief Fellow, Santhigiri Research Foundation, Principal,Global Institute of Public Health
  • Bindhya Vijayan Central University of Tamil Nadu https://orcid.org/0000-0003-2608-8533

DOI:

https://doi.org/10.47985/dcidj.465

Keywords:

Cerebral palsy, menstruation, caregivers, contraception, developmental disorders, puberty

Abstract

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.

Author Biographies

Arathi P Rao, Prasanna School of Public Health

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, Kasturba Medical College, Manipal Academy of Higher Education

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.

Manisha Gore, Symbiosis International University

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, Chief Fellow, Santhigiri Research Foundation, Principal,Global Institute of Public Health

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, Central University of Tamil Nadu

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.

Downloads

Published

2021-10-26

How to Cite

1.
Rao AP, Shah H, Guruvare S, Gore M, Nayar KR, Vijayan B. Perspectives of Caregivers on Pubertal Changes among Young Adolescent Girls with Cerebral Palsy: a Qualitative Analysis. DCIDJ [Internet]. 2021 Oct. 26 [cited 2024 Sep. 8];32(3):76-90. Available from: https://dcidj.uog.edu.et/index.php/up-j-dcbrid/article/view/465

Issue

Vol. 32 No. 3 (2021): Autumn 2021

Section

Original Research Articles

License

Copyright (c) 2021 The Author(s)

Creative Commons License

This work is licensed under a Creative Commons Attribution 4.0 International License.

Authors who publish with this journal agree to the following terms:

  1. 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.
  2. 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.
  3. 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).
Crossref
Scopus
Google Scholar
Europe PMC