Needs Assessment of Families with a Person with Intellectual Disability
DOI:
https://doi.org/10.29120/jds.v11i2.790Abstract
Background: Intellectual disability is a condition characterized by arrested or incomplete development of the mind. Individuals with intellectual disability (PWID) are often highly dependent on their families or caregivers, particularly their parents. To improve mental health services and overall quality of life, assessing the needs of families caring for PWID is a crucial step. It is also important to explore related variables such as family efficacy, family resilience, pathways to care, the stigma experienced by caregivers, and their help-seeking behaviour, especially in the context of a tertiary care setting in this region. Objectives: The study aimed to assess the needs of families of persons with intellectual disability, evaluate family efficacy and resilience, examine pathways to care and caregiver-experienced stigma, and explore associations among these variables. Method: This was a cross-sectional, institution-based descriptive study. Using criteria-based sampling, 37 parents of PWID who attended the outpatient department (OPD) of a tertiary care hospital were recruited. All participants lived with the PWID, met the inclusion and exclusion criteria, and provided written informed consent. The diagnosis of mental retardation was confirmed according to ICD-10 criteria. Data collection tools included the Socio-demographic and Clinical Data Sheet, NIMH Family Needs Schedule, NIMH Family Efficacy Scale, Family Interview Schedule (FIS), Resilience Scale for Adults (RSA), and Goldberg’s Pathways to Care Instrument. Results: The study found that parents of PWID expressed high levels of needs and family efficacy. Families with higher resilience reported greater needs, indicating that resilience may increase awareness or articulation of needs. A negative association was found between caregiver stigma and family efficacy, with higher stigma linked to lower efficacy. Overall, families showed above-average resilience but experienced a high degree of stigma.
Keywords: Intellectual disability, mental retardation, family needs, family efficacy, family resilience, caregiver stigma
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