Health services for people with disabilities: A longitudinal study

Project

Ausgangslage und Ziele

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.

Project Management

Wicki Monika T.

Monika Wicki Prof. Dr. phil.

Professorin für Special Needs Educational Governance

Facts

  • Duration
    12.2016
    10.2020
  • Project number
    3_20

Project Team

  • Mirjam Arter

Cooperations

Financial support

Question

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

Methodical approach

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.

Cooperations

Financial support

Publications

  • Wicki, M.
    Gesundheit und Entscheidungen am Lebensende von Menschen mit Behinderung – eine Längsschnittstudie (12/2016-12/2019).
    Fachtagung der Fachgruppe Erwachsene mit Behinderung von Curaviva Schweiz.,
    Zürich, Schweiz.
  • Wicki, M.
    Gesundheit und Entscheidungen am Lebensende von Menschen mit Behinderung – eine Längsschnittstudie (12/2016-12/2019).
    [Poster].
    Closing symposium on the SAMS funding program Research in Palliative Care 2014–2018,
    Bern, Schweiz.
  • Wicki, M.
    Beeinträchtigte Versorgung - Gesundheitsversorgung von älter werdenden Menschen mit Beeinträchtigungen in der Schweiz.
    Forschungskolloquium. Interkantonale Hochschule für Heilpädagogik Zürich. ,
    Zürich, Schweiz.
  • Wicki, M.
    (2019).
    Schlussbericht Gesundheit und Entscheidungen am Lebensende von Menschen mit Behinderung – eine Längsschnittstudie (12/2016-12/2019).
    Interkantonale Hochschule für Heilpädagogik Zürich.
  • Wicki, M., & Arter, M.
    (2018).
    Gesundheitsversorgung von Menschen mit Behinderungen. Erster Bericht zu Handen des Beirates.
    Zürich: Interkantonale Hochschule für Heilpädagogik.
  • Wicki, M., & Arter, M.
    (2018).
    Gesundheitsversorgung von Menschen mit Behinderungen. Erste Ergebnisse der Studie der Interkantonalen Hochschule für Heilpädagogik.
    Interkantonale Hochschule für Heilpädagogik (HfH).
  • Wicki, M.
    Health status, use of medical services and end-of-life decisions of people with disabilities – a longitudinal study.
    [Poster].
    Tagung Versorgungsforschung in der Schweiz – wie weiter? 5. Symposium zur Versorgungsforschung im Gesundheitswesen,
    Bern, Schweiz.
  • Wicki, M.
    Health Status, use of Medical Services of People with Disabilities: a Longitudinal Study.
    [Poster].
    IASSIDD Health SIRG 2017 Conference «Bridging the gap: from evidence to improved health for persons with intellectual and developmental disabilities»,
    Belfast, Northern Ireland.
  • Wicki, M.
    Health Status, use of Medical Services and End-of-life Decisions of People with Disabilities – a Longitudinal Study.
    [Poster].
    EAPC 2017, 15th World Congress of the European Assiciation of Palliative Care,
    Madrid, Spain.
  • Wicki, M.
    Health Status, use of Medical Services and End-of-life Decisions of People with Disabilities – a Longitudinal Study (Switzerland).
    [Konferenzvortrag].
    World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities,
    Glasgow, Scotland.
  • Wicki, M.
    Health Status and use of health services of people with ID in Switzerland
    [Konferenzvortrag].
    World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities,
    Glasgow, Scotland.
  • Wicki, M.
    Health Status, use of Medical Services and End-of-life Decisions of People with Disabilities – a Longitudinal Study (Switzerland)
    [Konferenzvortrag].
    EAPC 2019 - 16th World Congress of the European Association for Palliative Care,
    Berlin, Deutschland.