Service Delivery

Parental work: an account of the day-to-day activities of parents of adults with learning disabilities.

Shearn et al. (1997) · Journal of intellectual disability research : JIDR 1997
★ The Verdict

Parenting an adult with learning disabilities is a lifelong, evolving job that brings new stressors services often miss.

✓ Read this if BCBAs working with adults with IDD who live with family
✗ Skip if Clinicians serving only young children or group-home residents

01Research in Context

01

What this study did

Shearn et al. (1997) talked with 33 parents who live with their adult sons or daughters with learning disabilities. The team asked parents to describe a normal day. They wanted to see what kind of work parents still do once their child is grown.

Parents shared stories about chores, money choices, and worries. The study used these talks to map the hidden workload of parenting an adult with learning disabilities.

02

What they found

The job never ends. Parents told of daily care, money stress, and health strain that keeps changing shape. One parent said, "I thought it would get easier."

Parents also faced new dilemmas. They had to decide when to share private details about their adult child. Services often missed these ongoing needs.

03

How this fits with other research

Freeman et al. (2015) pooled data from 19 studies and showed parents of kids with developmental disabilities report worse physical health than other parents. This backs up the 1997 health strain theme with numbers.

Smith et al. (2010) used daily diaries and found mothers of teens and adults with autism carry more chores and fatigue. The pattern matches the 1997 story of endless housework.

Rossetti et al. (2016) looked at younger adults and saw parents acting as fierce advocates to create college or job chances. This extends the 1997 view: the parent role shifts from daily care to creative planning, but it still takes lots of effort.

04

Why it matters

If you serve adults with IDD, remember the parent is still working. Ask about chores, money, and health at every visit. Offer respite, future-planning help, and a chance to talk about disclosure worries. A simple question like "What did you do for yourself this week?" can open the door to support.

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Add two parent questions to your intake: "What daily tasks do you still handle?" and "What would help you take a short break?"

02At a glance

Intervention
not applicable
Design
qualitative
Sample size
33
Population
intellectual disability
Finding
not reported

03Original abstract

The parental role can be an enduring one for many people with sons or daughters with learning disabilities. Despite this, there has been little research on parents' experiences during their offspring's adult years. The present paper examines the different dimensions of work undertaken by parents in the care of their adult offspring and how they felt these had changed over the years. The paper also explores how parents seek to combine parental work with other aspects of their lives. Data for this study were derived from a qualitative, in-depth study of the experiences of parents of 33 co-resident adult offspring with learning disabilities. The data suggest that the long-term nature of parenting involves both stability and change. For example, some parents had experienced a depletion of physical resources and enthusiasm that made it difficult for them to carry out some aspects of parental work. Parents had also met new difficulties, such as the handling of the disclosure of learning disability to their offspring, as well as to members of the public. For all parents, parenting had remained an extensive involvement, so that they still found it difficult to meet the demands of parenting, and their own non-parental tasks and interests. The data also indicate that service intervention needs to be based on an appreciation of the temporal and personal difficulties in parents' lives, and that service intervention can add to the perceived burden of carers without such an appreciation.

Journal of intellectual disability research : JIDR, 1997 · doi:10.1111/j.1365-2788.1997.tb00712.x