Family experiences with accessing information, social and resource supports as participants in services for their special needs child over three years of age.

摘要

Families of children with special needs often experience substantial stress and an increased need for informational, social, or resource support throughout their child's growth and development. However, supports for families of children older than three often report a severe shortage of supports and difficulty accessing and utilizing them. Using purposive sampling techniques, this phenomenological and mixed methods study recruited 6 mothers of children over the age of 3 years diagnosed with autism spectrum disorder to participate in a single 2-hour focus group. Qualitative data was collected using open-ended and semi-structured questions to gain a deeper understanding of parent's lived experiences with obtaining supports and the meanings they make of these experiences. A content analysis of qualitative data identified 7 categories and themes: the period of diagnosis, effects on marriage, community experiences, feelings of empowerment, interpersonal well-being, adaptation, benefit, hopefulness, and child and family future needs. Families' statements were further categorized around four areas of influence referred to as SWOTs (strengths, weaknesses, opportunities, threats) and used to create a Likert-type Parent Support Survey questionnaire developed to quantitatively measure and compare participants' perceptions of experiences. Analysis and comparison of participants' group means ratings identified factors they perceived as helping or hindering their access to information, social support, and resources, as well as their attributions of control (internal or external) over these experiences. Analysis of similarities and differences among participants' responses using a Ward Hierarchical Analysis method identified those factors that "hang" together. Bivariate data of participants' group means ratings was plotted onto one of four SWOT quadrants of the IE 2 SWOT Matrix Grid to visually illustrate factors perceived by parents as being strengths (internally controlled and enhancing), weaknesses (internally controlled and inhibiting), opportunities (externally controlled and enhancing), and threats (externally controlled and inhibiting). Multiple methods of collection and analysis (content analysis, numerical analysis, and graphical depiction) of participant responses provided a deeper understanding of those factors that are most helpful to families and therefore should be leveraged or exploited and those factors that act as barriers to family access to supports and should be confronted, mitigated or reduced.