Raising a child with high care needs : the parental experience of caring for a child who experiences disability and has high care needs : a thesis presented in partial fulfilment of the requirements for the degree of MAster of Social Work, Massey University

Abstract

This thesis explores the experience of raising a child who has impairment in bodily function as well as high care needs. A small group of mothers who are bringing up a child who has required a high level of parental input were interviewed to explore the experiences that had influenced the development of parental skill. The thesis is backgrounded by a literature review that traverses the development of services to support child disability in New Zealand, meanings and definitions of disability - specifically those definitions used in New Zealand policy and service delivery, parenting, implications when parenting a child has a disability, support systems, accessing services, and the role of caregiver parent. Data from the interviews carried out was analysed and revealed variables that were common to all the mothers interviewed. All the mothers had been fully involved in the clinical aspects of their child's assessment, treatment and rehabilitation from the time their child was diagnosed as having a condition that required medical intervention. All the mothers interviewed could be described as having developed competency and parenting strength that had lead to them becoming 'experts' who were caregivers, medical technicians, advocates and case managers for their child, because they had the means to become involved in specialist aspects of their child's life.