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Health services for people with disabilities: A longitudinal study

Background and aims

Studies in different countries (Emerson & Hatton, 2014; Haveman et al., 2011) have found clear differences between the health and healthcare of people with and without disabilities. The PALCAP – Palliative care for people with intellectual disabilities study, which was conducted under National Research Programme 67 (NRP 67) 'End of Life' revealed that among people in residential facilities, life-prolonging treatment was more often dispensed with for people with intellectual disability than for people with other disabilities. The findings indicated that the health status of people with intellectual disability or severe multiple disabilities was very poor at the end of life.

Because Switzerland's official statistics do not record data on the health status and healthcare of people who live in residential facilities for people with disabilities (Bundesamt für Statistik, 2009), this research project aimed to: (1) gather data on the health status, healthcare, and health trajectories of people with disabilities aged 50-65 years and living in residential facilities in Switzerland, and (2) identify factors that have a decisive effect on the decision to withhold life-prolonging treatment for persons with intellectual disability.

Questions

The study addressed the following research questions:

  • What is the health status and healthcare of people with lifelong disabilities aged 50-65 years in Switzerland?
  • What differences are there between the health status and healthcare of persons who live in residential facilities for people with disabilities and persons who live independently or with relatives?
  • What differences are there between the health status and healthcare of persons with intellectual disability (as a specific lifelong disability) and the health status and healthcare of persons with another lifelong disability?
  • What relationship is there between the persons' health status and end-of-life decisions

Methods

To examine context factors, health status, access to healthcare, and decisions at the end of life of people with disabilities in Switzerland, a longitudinal study with two measurement time points (t1 and t2) was conducted with approximately 400 persons receiving disability benefits and aged 50-65 years in selected cantons (Bern, Lucerne, Saint Gallen, Zurich, Vaud, and Ticino). Letters were sent to all residential facilities. In addition, 10,000 addresses including telephone numbers were purchased from the company AZ Direct AG in Rotkreuz. These were addresses of men and women aged 50-65 in the selected cantons, who were then contacted by telephone in order to find persons with a disability and disability benefits.

The participants were surveyed by questionnaire on their health and healthcare. The questionnaire survey was conducted by means of telephone or personal interviews with the participants (or with their caregiver or guardian if they were unable to participate in the interview due to complex disabilities) from July 2017 to December 2017 and from July 2018 to December 2018.

In a separate survey, all residential facilities in the selected cantons were asked to provide information on deaths between 2015 and 2017.

Results

Questionnaire interviews were conducted with 383 persons with disabilities aged 50-65, two thirds of whom lived in residential facilities and on third who lived independently. In addition, detailed information was gathered on a total of 161 deaths.

The findings regarding health status and healthcare largely confirmed findings in the research literature. People with disabilities have a poorer health status than people without disabilities, and they utilize healthcare services far more frequently. Adding to the current state of research, this study revealed that persons with disabilities who lived in residential facilities had a far better health status than persons who lived independently, whereas frequency of utilization of the healthcare system by the two groups was similar. Regarding end of life, no differences were found in the residential facilities between the health status and healthcare of persons with intellectual disability and persons with other disabilities at the end of life. Moreover, life-prolonging treatment was equally frequently not implemented for persons with intellectual disability and persons with other disabilities, and the two groups were equally frequently included in medical decision-making at the end of life.

Facts

Duration
12/2016-10/2020
No.
3_20

Project Management

Prof. Dr. phil.  Wicki

Dozentin

Project team

Kontakt

Forschung und Entwicklung
Tel: +41 44 317 11 81

zfe[at]hfh.ch zfe