Parenting individuals with intellectual and developmental disabilities in South India.
South Indian parents say therapy clinics ignore social life and changing life stages, echoing parent voices from Ghana to Mongolia.
01Research in Context
What this study did
Kaniamattam et al. (2021) talked with parents in South India who have children with intellectual or developmental disabilities.
They asked open questions about daily life, services, money, and social needs.
Kids ranged from young to adult; many could not speak.
What they found
Parents said rehab clinics focus on walking or talking, not on joining festivals, temples, or play.
Needs shift as children grow: school help first, then job links, then long-term care.
Families feel alone, broke, and unsure where to turn next.
How this fits with other research
Sutton et al. (2022) in Ghana found the same five pain points: feelings, facts, cash, friends, and formal help.
Garwood et al. (2021) added Mongolian autism families who also cite money woes and service gaps, showing the pattern crosses borders and labels.
Kehinde et al. (2023) widen the lens: in Nigeria and South Africa mothers carry most load while fathers stay peripheral, hinting that culture shapes which needs feel heaviest.
Together the studies say low-resource families worldwide voice similar unmet needs, but local gender roles decide who actually asks for help.
Why it matters
If you write goals only for motor or language skills, you may miss what parents value most: a birthday invite, a trip to market, a safe day program. Ask what social milestone matters next, update the plan each birthday, and link moms to local support groups that already exist.
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02At a glance
03Original abstract
PURPOSE: There is limited research on the needs and expectations of parents of children with Intellectual and Developmental Disabilities (IDD) and associated complex communication needs (CCNs) in South India. The current paper will present the findings from a study that explored parents' needs and expectations, including those related to rehabilitation. METHOD: This study adopted an Interpretative Phenomenological Analysis framework to understand the needs and expectations of 16 parents of 15 children with IDD and associated CCNs. Data were analyzed for the whole group, and two subgroups: parents of children 12 years or younger, and parents of adults and adolescents older than 12 years. RESULT: Data analysis highlighted the following: (1) unmet or undermet needs and expectations with regard to children's social participation, societal and familial support, childcare needs, financial requirements, and need for information; (2) changing needs and expectations of parents as their children grow older; (3) inadequacy of social participation and interaction opportunities for the participants' children. CONCLUSION: It was concluded that rehabilitation providers including Speech Language Pathologists (SLPs) need to be aware of parents' needs and expectations and collaborate with the families to attain rehabilitation goals that facilitate social participation.
Research in developmental disabilities, 2021 · doi:10.1016/j.ridd.2021.103888