Family impact in intellectual disability, severe mental health disorders and mental health disorders in ID. A comparison.
Dual diagnosis of ID plus mental illness places the highest strain on caregivers, so build extra family support into every plan.
01Research in Context
What this study did
Martorell et al. (2011) ran a survey with three groups of caregivers. One group cared for adults with intellectual disability only. A second group cared for adults with schizophrenia only. The third group cared for adults who had both intellectual disability and mental health problems.
The researchers asked each caregiver about family burden. They wanted to see which group felt the heaviest load.
What they found
Caregivers in the dual-diagnosis group reported the highest burden. Their scores topped both the ID-only group and the schizophrenia-only group.
The study shows that when ID and mental illness occur together, family stress is greater than either condition alone.
How this fits with other research
Burford et al. (2003) found the same pattern eight years earlier. Their survey also showed that adding severe behavior or psychiatric problems to ID sharply raises caregiver burden. The 2011 study repeats the finding with a third comparison group.
Reeve et al. (2016) extended the result. They showed that within the ID-plus-mental-health group, carers of adults with autism felt the most stress. This pinpoints autism as an extra risk factor.
Ee et al. (2022) added depth. Through caregiver interviews they learned families struggle to spot mental-health symptoms and want closer teamwork with specialist services. The numbers now have faces and voices.
Why it matters
When you write a behavior plan for an adult with both ID and mental illness, plan for the caregiver too. Schedule brief check-ins, share clear symptom lists, and link families to respite or counseling. Small supports can lower the added burden this research keeps confirming.
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02At a glance
03Original abstract
Family impact (or family burden) is a concept born in the field of mental health that has successfully been exported to the ambit of intellectual disability (ID). However, differences in family impact associated with severe mental health disorders (schizophrenia), to ID or to mental health problems in ID should be expected. Seventy-two adults with intellectual disability clients of the Carmen Pardo-Valcarce Foundation's sheltered workshops and vocational employment programmes in Madrid (Spain), 203 adults diagnosed with schizophrenia from four Spanish Community Mental Health Services (Barcelona, Madrid, Granada and Navarra) and 90 adults with mental health problems in ID (MH-ID) from the Parc Sanitari Sant Joan de Déu Health Care Site in Sant Boi de Llobregat, Barcelona (Spain) were asked to participate in the present study along with their main caregivers. Family impact experienced by caregivers was assessed with the ECFOS-II/SOFBI-II scale (Entrevista de Carga Familiar Objetiva y Subjetiva/Objective and Subjective Family Burden Interview). In global terms, results showed that the higher family impact was found between caregivers to people with MH-ID. The interaction of both conditions (ID and mental health problems) results in a higher degree of burden on families than when both conditions are presented separately. There was also an impact in caregivers to people with schizophrenia, this impact being higher than the one detected in caregivers to people with intellectual disability. Needs of caregivers to people with disability should be addressed specifically in order to effectively support families.
Research in developmental disabilities, 2011 · doi:10.1016/j.ridd.2011.05.021