RESUMEN
BACKGROUND: Most children with severe and profound intellectual disability (SPID) are cared for in their homes, according to current recommendations. Yet, their families face marked emotional, health, and economic challenges. AIMS: The aim of this study was to examine family quality of life (FQOL) along with psychological and health factors among families who raise children with SPID at home versus those residing in residential care. METHODS: Sixty caregivers of children aged 2 to 18 years (M = 8.81, SD = 4.62) with SPID (developmental quotient/intellectual quotient <35), living at home (38 caregivers-"home group") or in residential care (22 caregivers-"residential group"), completed the FQOL Survey, Beck Depression Inventory, Parental Stress Index, Shame and Guilt Scale, and Health and Demographic questionnaires. RESULTS: FQOL for most domains and dimensions was rated better among families whose child resides in residential care compared with families who raise their child at home. Similarly, parental stress relating to the child was worse among families who raise their children at home. No significant differences between the 2 groups were noted on other psychological or health measures. CONCLUSION: Family and individual needs for those raising a child with SPID at home should be addressed when planning policy and interventions.
Asunto(s)
Discapacidad Intelectual , Calidad de Vida , Niño , Humanos , Calidad de Vida/psicología , Padres/psicología , Encuestas y Cuestionarios , Cuidadores/psicología , Familia/psicologíaRESUMEN
Among the Palestinian minority in Israel, residential placement of people with intellectual disabilities [ID] is relatively new and steadily increasing, but poorly studied. A qualitative design was used to explore the process of residential placement decision by 18 parents of people with ID through semi-structured interviews. Sampling was purposive and data was analyzed thematically. Four main themes emerged representing parents' perceptions and experiences along the placement decision-making process, together indicating an experience of deeply 'conflicted parenting': (a) initial resistance to placement and its perception as abandonment and parental failure; (b) attrition following cumulative difficulties and lack of assistance; (c) resignation and reframing of placement as a necessary evil; (d) relief mixed with guilt, pain, and ambivalence following placement. Residential placement process proved to be linked primarily to lack of resources and of accessible culturally-competent services within the community. Parents' experience and behavior along the placement decision process reflect relentless efforts to practice "good parenting". This concept is culturally specific and in the present case entails commitment to consider the individual child's wellbeing together with the family's as a whole. Implications for practice are suggested.
Asunto(s)
Árabes , Asistencia Sanitaria Culturalmente Competente , Toma de Decisiones , Accesibilidad a los Servicios de Salud , Institucionalización , Discapacidad Intelectual , Padres , Adolescente , Adulto , Niño , Servicios de Salud Comunitaria , Femenino , Humanos , Israel , Masculino , Persona de Mediana Edad , Grupos Minoritarios , Responsabilidad Parental , Percepción , Investigación Cualitativa , Instituciones Residenciales , Adulto JovenRESUMEN
OBJECTIVE: We studied the experience of family occupations in the Snoezelen context (i.e., a highly specialized therapeutic room for family gatherings) and analyzed how it facilitated occupations for parents of children with severe and profound mental retardation living in residential facilities. METHOD: In-depth interviews and participatory observations were held with 10 families of children with mental retardation living in a long-term residential facility for children with mental retardation in Haifa, Israel. RESULTS: Two main themes emerged: The Snoezelen environment was experienced as another world, where parents sensed detachment from external reality and a transition to relaxation and intimacy. The intimacy of the Snoezelen world fostered the experience of being together as a family, where all family members shared fun activities and strengthened their relationship. CONCLUSIONS: A sense of intimacy and relaxation, provided by the Snoezelen environment, is important in facilitating family occupations for this population. Interventions in occupational therapy must be designed that take these requirements into consideration.