Health status, social support, and quality of life among family carers of adults with profound intellectual and multiple disabilities (PIMD) in Taiwan

Abstract

Background Primary family carers of adults with profound intellectual and multiple disabilities (PIMD) experience a range of considerable demands.

Method A census survey was conducted in a city of Taiwan; 796 family carers of adults (aged 18 or older) diagnosed with intellectual disability and/or with multiple disabilities living with the family completed interviews.

Results Adults with PIMD made up 9.5% of this group (n = 76). Nonparametric analyses showed that health status, formal social support, and quality of life (QoL; physical domain score) of carers of adults with PIMD were significantly lower than their counterparts (i.e., carers of adults with less severe disability), and that these variables were significantly associated with carer educational level, employment status, family income, and social networks.

Conclusions Interventions need to include the creation of a supportive environment for adults with PIMD and their lifelong family carers, particularly those who are more socially disadvantaged.

Keywords:

• intellectual disability
• multiple disabilities
• profound disability
• PIMD
• family carer

Notes

The 16 types of disabilities include vision disability, hearing disability, balance disability, voice or speech disability, limb disability, intellectual disability, loss of functions of primary organs, facial damage, chronic unconsciousness, senile dementia, autism, chronic psychosis, multi-disability, difficult-to-cure epilepsy, physical or mental disability caused by infrequent disease and confirmed by the central competent authority in charge of health and other disabilities (Taiwan, ROC, Ministry of Interior, 2009).

The EQ-5D contained five items to measure five dimensions of mobility, self-care, usual activities, pain/discomfort, anxiety/depression, each of them coded by an ordinal number, ranging from 1 (no problems) to 3 (extreme problems) (e.g., I have no pain or discomfort, I have moderate pain or discomfort, I have extreme pain or discomfort) (U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality, 2005). In this study, we recoded the ordinal numbers (1 = severe problems, 2 = moderate problems, 3 = no problems); a higher score indicated a higher level of health.

The average age of the 76 adults with PIMD was 40.2 years. The average age of those adults (n = 51) cared for by their parents was 31.2, and the average age of their parental carers was 58.7 (SD = 10.5). Older adults were more likely to be cared for by their siblings or other relatives.