Supporting parents of youths with intellectual disabilities and psychopathology.
Parents of youths with ID plus mental-health issues overwhelmingly want counselling yet rarely get it, mainly because they don't know where to turn.
01Research in Context
What this study did
Douma et al. (2006) sent a survey to parents who have a youth with both intellectual disability and mental-health problems. They asked what kinds of help the families wanted and whether they actually got it.
What they found
Almost nine in ten parents said they needed support. Counselling was the most-wanted service, yet most never received it. Two big barriers stood out: parents thought the problem was not serious enough, and they simply did not know where to go.
How this fits with other research
The finding repeats across decades. Sutphin et al. (1998) saw the same gap in adults who themselves have ID: they asked for community and social supports but got little. van der Miesen et al. (2024) updated the story with parents of younger disabled children and found the same 'we don't know what's out there' problem still alive in 2024.
Qualitative studies add the 'why.' Lambrechts et al. (2009) interviewed mothers who said services felt generic, hard to reach, and run by staff who lacked behavior know-how. Houseworth et al. (2018) heard the same from autism families: formal help felt disjointed, so parents leaned on informal networks.
Together the papers show a steady line: parents keep asking for counselling, information, and skilled guidance, yet systems still fail to hand them a clear map.
Why it matters
You can shorten the maze. After you diagnose or start a behavior plan, hand the family a short, plain-language sheet that lists local counselling options, crisis lines, and parent groups. Spend five minutes showing them the first website or phone number. That tiny step tackles the top reason these parents go without help: not knowing where to knock.
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02At a glance
03Original abstract
BACKGROUND: Parents of children and adolescents with both intellectual disabilities (ID) and psychopathology often experience high levels of parenting stress. To support these parents, information is required regarding the types of support they need and whether their needs are met. METHOD: In a sample of 745 youths (aged 10-24 years) with moderate to borderline ID, 289 parents perceived emotional and/or behavioural problems in their child. They were asked about their needs for support and whether these needs were met. Logistic regression analysis revealed the variables associated with both needing and receiving specific types of support. In addition, we asked those parents who had refrained from seeking support about their reasons. RESULTS: Most parents (88.2%) needed some supports, especially a friendly ear, respite care, child mental health care and information. Parents who perceived both emotional and behavioural problems in their child needed support the most. In addition, parents whose child had any of these problems before the past year, who worried most about their child and suffered from psychopathology themselves, more often needed support. Parents of children with moderate ID or physical problems especially needed 'relief care', that is, respite care, activities for the child and practical/material help. The need for a friendly ear was met most often (75.3%), whereas the need for parental counselling was met least often (35.5%). Not receiving support despite having a need for it was primarily related to the level of need. Parents who indicated to have a stronger need for support received support more often than parents who had a relatively low need for support. The parents' main reasons for not seeking support concerned their evaluation of their child's problems (not so serious or temporary), not knowing where to find support or wanting to solve the problems themselves first. CONCLUSIONS: Most parents had various support needs that were frequently unmet. Service providers should especially aim at providing information, activities, child mental health care and parental counselling. Furthermore, parents need to be informed about where and how they can obtain what kind of support. A case manager can be of help in this.
Journal of intellectual disability research : JIDR, 2006 · doi:10.1111/j.1365-2788.2006.00825.x