"Making the most of their body and their life": parents' experiences of health care for their children with cerebral palsy

Hayles, Emily R. (2014) "Making the most of their body and their life": parents' experiences of health care for their children with cerebral palsy. Masters (Research) thesis, James Cook University.

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Abstract

Background:

Children with cerebral palsy often have numerous health care needs and require complex multidisciplinary health care. Holistic family centred care that is inclusive of the viewpoints of parents and children is regarded as best practice for health care service delivery for children with cerebral palsy and their families. However, dissatisfaction with care is an ongoing issue for parents of children with cerebral palsy, despite theoretical changes to health care service delivery practices toward a more family centred approach. In addition, current guidelines and standards of care for this population have been developed by health professionals without, or with little, involvement of parents. Parents' perceptions of their child's health care needs may differ from that of health professionals. If the existing guidelines and standards do not reflect the needs of the child and the family due to the lack of parental input, this may be part of the reason why parents of children with cerebral palsy continue to be dissatisfied with their child's care. No previous researchers have investigated how parents of children with cerebral palsy experience health care for their child.

Aim:

The aim of this study is to explore parents' experiences of health care for their children with cerebral palsy living in a regional area of Queensland, Australia. From this exploration, the aim of this study is to develop a conceptual model that explains parents' experiences and can be used to inform future clinical health care service delivery practices and guidelines and standards of care for children with cerebral palsy and their families.

Methods:

This study is a qualitative exploratory study using grounded theory methodology, and is underpinned by a relativist approach and social constructivist viewpoint. The study design was selected based on the purposes and clinical context of the study, as well as my positioning as a health professional with a background in physiotherapy who has provided health care to children with cerebral palsy and their families. Participants were parents of children with cerebral palsy living in a regional area of Queensland, Australia, and were recruited using convenience and theoretical sampling. Data collection and analysis was conducted concurrently following the grounded theory method of constant comparative analysis. Two focus groups and eight in-depth interviews were conducted with eleven parents over a ten month period. Data was analysed using systematic grounded theory methods including coding, memoing, sorting and diagramming. A conceptual model was developed to explain parents' experiences. The final conceptual model was compared and contrasted with relevant literature, enabling identification of how the study findings contributed to current understandings of health care service delivery for children with cerebral palsy and their families.

Results:

Parents living in a regional Queensland area experience health care for their children with cerebral palsy as an constant but evolving process of "making the most of their body and their life". The core category of "making the most of their body and their life" is how parents' experience the overall purpose for health care in the life of their child and family. Key categories of the conceptual model that represent important aspects of care for parents of children with cerebral palsy include learning as you go, navigating the systems, meeting needs through partnership, being empowered or disempowered, and finding a balance. These categories resonate with and support key principals of current approaches to health care service delivery for this population including family centred care, the concept of a partnership between parents and their children's health care providers, and empowerment. However, the findings of the study also identify new understandings of parents' experiences of health care for their children with cerebral palsy. These understandings include the temporal nature of the needs of the child and family evolving over time, the concept of being empowered or disempowered through the interactive processes of health care, the importance of having a community or network of supports to receiving information and guidance, and the importance of the attitudes and values of health care workers and services to parents' experiences of their child's health care.

Conclusion:

Health care workers and services should take into consideration parents' experiences of health care for their children with cerebral palsy and the impact it has on them, their child and their families. Modifications to health care service delivery practices to better reflect parents' experiences of health care and important aspects of care, as well as the development of new models of care that incorporate the conceptual model developed from this study, could potentially assist in improving parental satisfaction with care for their children with cerebral palsy. Further research exploring children's experiences of health care, as well as comparison of experiences in different geographical areas, with different models of service delivery, and with health professionals and policy makers, is required to develop a broader theory around health care service delivery for children with cerebral palsy and their families.

Item ID: 43776
Item Type: Thesis (Masters (Research))
Keywords: cerebral palsy; children; CP; disabilities; disabled; health care; healthcare; paediatrics; parents' experiences; parents' perceptions; pediatrics service delivery; special needs
Related URLs:
Additional Information:

Publications arising from this thesis are available from the Related URLs field. The publications are:

Chapter 3: Hayles, Emily, Jones, Anne, Harvey, Desley, Plummer, David, and Ruston, Sally (2015) Delivering healthcare services to children with cerebral palsy and their families: a narrative review. Health and Social Care in the Community, 23 (3). pp. 242-251.

Chapter 4: Hayles, Emily, Harvey, Desley, Plummer, David, and Jones, Anne (2015) Focusing on families' experiences of health care: choosing a qualitative research design. Journal on Developmental Disabilities, 21 (2). pp. 110-118.

Chapter 6: Hayles, Emily, Harvey, Desley, Plummer, David, and Jones, Anne (2015) Parents' experiences of health care for their children with cerebral palsy. Qualitative Health Research, 25 (8). pp. 1139-1154.

Date Deposited: 17 May 2016 01:58
FoR Codes: 11 MEDICAL AND HEALTH SCIENCES > 1114 Paediatrics and Reproductive Medicine > 111403 Paediatrics @ 50%
11 MEDICAL AND HEALTH SCIENCES > 1117 Public Health and Health Services > 111703 Care for Disabled @ 50%
SEO Codes: 92 HEALTH > 9205 Specific Population Health (excl. Indigenous Health) > 920599 Specific Population Health (excl. Indigenous Health) not elsewhere classified @ 100%
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