Half of families with disabled kids are ‘dysfunctional’: Study

CHENNAI: When a group of researchers set out to study the “dysfunction” among 62

families

of children with intellectual disabilities, they found that more than half of them struggled to adapt with and relate to one another. But there was hope: a majority of them expressed positive beliefs stemming from their need to form new identities.

A team from Christian Medical College,

Vellore

, studied 62 families having children with intellectual disabilities and compared them with 62 “typical families” on various parameters like adaptability, partnership, affection, resolve, beliefs about family, beliefs about development, beliefs about purpose, cohesion organization and communication. They found that functional impairment was significantly more in special families: Only 21% of them said they had a satisfactory relational unit, while 71% of families without intellectually challenged children ticked this box.

The study, undertaken by the Child and Adolescent Psychiatry unit of CMC, was published recently in Indian Journal of Psychological Medicine.

Evaluation of their adaptability, partnership, growth and resolve using scientifically-validated scales revealed that 53% of the special families had a “dysfunction” as opposed to 19% in a typical family.

Paul Swamidhas Russell, a co-author of the study, explained this “dysfunctionality”. “In simple terms, dysfunction, going by the model we chose to study, is when there is/are problems in the structure (boundary), dynamics (power, role), emotional relationship and ability to change as new family members join the family and elderly members leave the family,” he said.

Parental education, parental literacy, parenting skills, existing marital conflicts, domiciliary violence, socio-economic status were also factored in for both groups before researchers arrived at their findings.

The highest proportion of children were in the 7- 12 years age group. Of the 62 children with disabilities, 39% of them were mild, 35% moderate, 18% severe, and 8% profound.

A majority of the primary care-givers interviewed were mothers in the 26-45 years age group. This, Dr Russell said, was no surprise. “In almost all low-middle income countries, which include India, there is no organised family-care for special needs. The financial resource is out-of-pocket and the primary care-giver involved in the care of the child with special needs is invariably the mother,” he said.

But the team’s findings were not all gloomy. A majority of parents from special families expressed positive beliefs, which the researchers have speculated could be because of the need to form new identities, attempts to derive existential meaning from the situation and the development of a sense of personal control. Many of them start self-support groups for similar families with special needs.

The study recommended screening for dysfunction among special families and prescribing family therapy when required.

Meenakshi Balasubramanian of NGO Equals, Centre for Promotion of Social Justice, said having a child with intellectual impairment places a lot of social and economic restrictions on the family.

“Lack of accessibility in public spaces, scarcity of rehabilitation options and expenses involved in bringing up an intellectually impaired child force parents to keep their children at home, often with their mothers, who could have otherwise been a source of income. This creates a sense of isolation,” said Meenakshi.

Intellectual impairment, she said, is just one of the barriers. “What we need to address is the attitudinal and environmental barriers. The government social protection programme, for example, looks only at the maintenance of the disabled and not our participation as an equal,” she said, adding that while other countries have a personal assistance service programme sponsored by the government, India has none.

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