Authors: Hu, XY (Hu, Xiaoyi); Turnbull, A (Turnbull, Ann); Summers, JA (Summers, Jean Ann); Wang, M (Wang, Mian)

Name of Journal: JOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES

Abstract:

This qualitative inquiry focused on the perceptions that Chinese families of children with developmental disabilities have pertaining to their needs. Data were collected through focus group discussions and in-depth interviews; transcript analysis relied on the constant comparative method. We identified seven categories of needs, subsumed under the following three thematic areas: survival needs, sufficiency needs, and enhancement needs. Survival needs refer to maintaining basic family existence and include (1) financial needs and (2) physical health needs. Sufficiency needs refer to families' needs for social inclusion, educational support, and relationships with others, and include the categories of (3) higher quality education and therapy for the child; (4) home-based education and information for parents; and (5) social inclusion for both parents and the child. Finally, the third theme relates to enhancement needs, defined as families' needs to realize family growth and development for a better family life; this includes the categories of (6) emotional health and (7) future planning. The authors found sufficiency needs were more child focused among respondents and that survival and enhancement needs for families in this study were directly linked to the whole family unit in promoting the family's overall functioning. The dynamic nature of needs suggests that more than one need may motivate families' desires for enhanced family quality of life.

Key Words:

China; developmental disabilities; family needs; qualitative inquiry; sufficiency