Strategies that enhance resilience in parents of children with physical disability

Author: Barbara Fogarty-Perry

Strategies that enhance resilience in parents of children with physical disability

Barbara Fogarty-Perry
22 October 2019

Fogarty-Perry, B. (2019). Strategies that enhance resilience in parents of children with physical disability. Executive Summary of a thesis submitted in conformity with the requirements for the degree of Master of Professional Practice.

Executive Summary

When one begins researching one never knows quite where it will end. It is a step into the unknown, new territory. The plan at the outset of this journey was to delve into the literature about resilience and the disability context in which some parents unexpectedly find themselves. The research question was “What strategies enhance resilience in parents of children with physical disabilities”? As a parent of a child with a physical disability I wanted to learn more about this topic myself.  Initially as part of the Master's programme, I created a review of learning and career progression and then outlined the research steps in a learning plan and went through necessary approvals of ethics and Māori consultation.

After examining the literature and summarizing this and obtaining the necessary approvals around Ethics and Māori consultation, an invitation was then sent via social media to the various parent networks this researcher is involved in, to invite participants to take part in the research. They were provided with information and consent forms and an interview was arranged. This was audio recorded and analysed thematically into findings under a summary of headings.  These were drawn from an examination of holistic models of coping and well-being, as there is no agreed resilience measuring tool at this point in time. In each section, the data obtained through the interviews was then compared to what the literature stated in each area. As the author was a participant in the research (autoethnography) her responses were italicized so the reader could identify these.

Once summarized these themes were developed into a model Perry’s Resilient Parents Model (2019), which drew the findings and context in which these parents found themselves together visually. Discussion followed around what was discovered through the interviews and a conclusion on the outcomes of the thesis ensued.

The research concluded that the author's understanding of what resilience is and how it occurs changed over the course of this thesis. Resilience moved from an initial view as an individual construct with parents being responsible to build resilience themselves, to examining the broader, collective responsibilities and a mixture of inter-related factors using a socio-ecological approach to resilience. Individual, family, community and societal factors were examined and the positive benefits to families who have a child with a physical disability were considered. Beliefs, areas of support and family routines were studied as well as ways of recovering strength in challenging situations were discussed. Those interviewed specifically mentioned areas of spiritual support such as having faith, getting in touch with the land and creation, social support including local community and living location, family relationships and physical supports including exercise as well as emotional supports of self-care and further study and increasing knowledge of disability which all assisted families to build strength. Problem solving was also identified as an area of possible support, by creating flexible solutions around care and breaks for parents as well as working out ways to fix things.

All of these supports contributed to the development of a socio-ecological model of resilience for families. This was then made into a visual model to reflect the findings. This exists within the challenging context of a lack of educational support for the children which was noted by 100% of the parents interviewed, as well as a range of impacts on parents in different ways due to having a child with a physical disability. This could take the form of the way they communicate, the impact on their reputation in the community, personal relationship pressure with their partner or health effects. It existed in an environment of poor support from outside agencies whose main purpose is to care for those with a disability. This was a challenging context for these families to live in.   

However, in order to build resilience, families focused positively on maintaining their daily family routines, self-care, systemic change and giving to others which indicated positive growth and moving forward despite the challenges faced and an ability to negotiate and adapt to the various challenges that came their way.

Key words: Resilience; Physical disability; Inclusive education; Wellbeing.

Barbara's academic supervisor was Jo Kirkwood.

Licence

This thesis is not publicly available. The Executive Summary is available under a Creative Commons Attribution licence CC BY 4.0 International.