Support Needs of Families Living with Children with Autism Spectrum Disorder in New Zealand

Parents of children with Autism Spectrum Disorder often cope with a range of challenging and stressful situations beyond those experienced by parents of typically developing children. Parents’ perception of the helpfulness of supports is a key component in the effectiveness of support in maintaining good mental health. Currently, the extent that New Zealand caregivers perceive support to be helpful is unclear, particularly New Zealanders who are Māori or live rurally. The purpose of this study was to determine whether parents of children with Autism Spectrum Disorder living in New Zealand, perceived that they received helpful support from both formal and informal sources, and to determine the aspects of support that were most helpful to them. Given the distinct context of living rurally with a child with ASD, and the importance of knowledge about the specific health needs of Māori, the research also investigated whether the families’ rurality and ethnicity impacted the availability and helpfulness of support. A convergent parallel, mixed methods design guided the use of quantitative and qualitative methods in determining the perceptions of support of caregivers of children with ASD aged three to fourteen. Quantitative and qualitative data from ninety-three participants recruited through several online forums including New Zealand based Autism organisations and Autism-related Facebook groups, were collected simultaneously via an online survey. Quantitative data collection included the Family Support Scale covering caregivers’ perception of available sources of support, which was analysed using one- and two-way Analysis of Variance. Qualitative data comprised caregivers’ response to one open ended question on the survey asking caregivers to highlight aspects of support that were helpful to them. Comments were analysed using the General Inductive Approach to determine themes in the responses. Analysis of the quantitative data indicated that New Zealand families draw on a range of informal and formal supports when they are available, both of which were rated as ‘somewhat helpful’ on average (informal M= 2.64, SD= 0.659; formal M= 2.57, SD= 0.905; overall scale M= 2.45, SD= 0.635). There were no significant differences in the perception of support between rural and urban dwelling families, while Māori families perceived support to be more helpful than Non-Māori families (F(1, 90)= 3.85, p= 0.05). Free text comments by caregivers regarding the helpful aspects of support resulted in three themes- the caring qualities of supporters, ‘knowledge is the absolute key’ and accessing support. This research found that support which is individualised and can meet the dynamic needs of the child and family is critical to caregivers’ perceptions of the success of this support. Greater emphasis on the quality of care, particularly the interpersonal skills of those in paid support-giving roles, and improved knowledge of supporters, was also indicated to improve the perceived helpfulness of support. Family-centred care is one framework that could usefully inform these areas of skill development by formal supporters. Given the relationship between being knowledgeable about ASD and being helpful supporters of families raising children with this condition, public awareness campaigns about ASD might also be helpful in improving caregivers’ experience of support from the general public and those in peripheral support roles