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The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy

Author

Listed:
  • Nor Azlin Mohd Nordin

    (Physiotherapy Programme, Center for Rehabilitation and Special Needs, Faculty of Health Sciences, Universiti Kebangsaan, Jalan Raja Muda Abdul Aziz, Kuala Lumpur 50300, Malaysia)

  • Eyu Hui Shan

    (Physiotherapy Programme, Center for Rehabilitation and Special Needs, Faculty of Health Sciences, Universiti Kebangsaan, Jalan Raja Muda Abdul Aziz, Kuala Lumpur 50300, Malaysia)

  • Asfarina Zanudin

    (Physiotherapy Programme, Center for Rehabilitation and Special Needs, Faculty of Health Sciences, Universiti Kebangsaan, Jalan Raja Muda Abdul Aziz, Kuala Lumpur 50300, Malaysia)

Abstract

The overall care for children with cerebral palsy (CP) is challenging to the family which causes significant impacts to their livelihood. There is limited qualitative research that reports the unmet needs of parents with physically disabled children, especially highly dependent CP. The aim of this study was to explore the unmet needs of parents of highly dependent children with CP. A qualitative study using semi-structured face to face interviews was carried out among nine parents of children with CP with gross motor classification function score (GMFCS) levels III, IV, and V. The interviews were tape-recorded and transcribed verbatim. Transcribed data was analysed using thematic analysis method. Several unmet needs were highlighted by the parents; namely the needs in receiving information regarding CP conditions, getting psychological and financial support and explaining the child’s condition to strangers. In addition, parents expressed the need for better support from the social welfare department, as well as in effectively organising family functioning. The findings of this study indicate that there is a need for the healthcare professionals to develop suitable strategies to assist the parents of highly dependent children with CP in fulfilling their specific needs. The role of relevant agencies should be optimised in addressing this area of concern.

Suggested Citation

  • Nor Azlin Mohd Nordin & Eyu Hui Shan & Asfarina Zanudin, 2019. "The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy," IJERPH, MDPI, vol. 16(24), pages 1-11, December.
    • Handle: RePEc:gam:jijerp:v:16:y:2019:i:24:p:5145-:d:298638
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    Cited by:

    1. Isabel Rodríguez-Costa & Irene De la Cruz-López & Ignacio Fernández-Zárate & Saturnino Maldonado-Bascón & Sergio Lafuente-Arroyo & Susana Nunez-Nagy, 2021. "Benefits of a Low-Cost Walking Device in Children with Cerebral Palsy: A Qualitative Study," IJERPH, MDPI, vol. 18(6), pages 1-9, March.

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