LASA side studies

Perceived control in health care, quality of care, and quality of life (side study)

Contact: Martijn Huisman

Background
In Western welfare states, for example in the Netherlands, governments currently advocate self-reliance among the aging population. This implies that older people are expected to manage their own health and to take care of themselves in their own homes as much as possible; support from people in one’s social network should be addressed first before turning to government support (Government of the Netherlands – changes in the way care and support are organised as of 1 january 2015). Underlying reasons for this approach are related to various factors, e.g. cost containment, new ideas about fostering empowerment of care consumers (Da Roit, 2012). The complexity of today’s health care may, however, undermine perceived control in health care among older adults. Especially for older adults with multiple or complex care needs, living in a society that strives for people’s self-reliance, perceived control in care may be at issue.

Objectives
It is unknown if and how perceived control in health care plays a role in people’s perceived quality of care and their quality of life. The purpose of this side study was to investigate this role. The side study consisted of multiple phases. In phase 1 of the study the concept of perceived control in health care was studied on the basis of qualitative interviews and Grounded Theory (Claassens et al., 2014). Purpose of this phase was to develop an operational definition and a measurement instrument to assess perceived control in health care and to enable quantitative assessments.

In phase 2, perceived control in health care was measured in a quantitative side study among respondents of LASA, targeting the research questions presented below.

• How are perceived control in health care and perceived quality of care interrelated?
• How are perceived control in health care and perceived quality of life interrelated?
• How does socioeconomic status (education level) affect all three outcomes?
• Does perceived control in health care have a mediating role in the relationship between    socioeconomic status and perceived quality of care / quality of life?

Method

Study design
A cohort study was conducted, including two measurements with an interval of six months. In January-March 2013 baseline measurement was completed; the follow-up assessment took place in September-November 2013. This side study is performed one to two years after the LASA wave H (2011-’12). Each measurement consisted of a one to two hour(s)-lasting structured interview, taking place at people’s homes. The interview included several questionnaires, among which perceived control in health care, perceived quality of care (QUOTE Nivel), perceived quality of life (WHOQoL-bref), sense of mastery (Pearlin & Schooler, 1978) and questions from the Minimum Data Set (MDS) about e.g. physical health and functioning, and mental wellbeing as included in The National Care for the Elderly Programme in the Netherlands (ZonMw, 2011). Also information was collected about people’s care networks (e.g. number and type of helpers, and number of hours care received, for each type of help).

The complete interview (codebook included) LASAHR01/LASAHR02 (pdf) and the card used to collect care network information LASAHR03 (pdf) are available in Dutch.

Subjects
Participants were respondents from the LASA study. Taking into account a minimum required sample size of 200 participants and the expectation that the non-response rate for LASA respondents does not exceed 30%, we invited 300 older adults. The inclusion criteria were: aged 65 or over, use of at least one type of professional health care in the past year (either care from a General Practitioner, a medical specialist, or having had a hospital admission), and MMSE ≥ 24. At baseline 247 interviews had been completed; 226 respondents underwent the follow-up interview about six months later.

References

  1. Claassens L, Widdershoven G.A., Van Rhijn S.C., Van Nes, F., Broese van Groenou M.I., Deeg D.J.H., & Huisman M. (2014). Perceived Control in Health Care: A Conceptual Model based on Experiences of Frail Older Adults. Journal of Aging Studies, 31, 159-170.
  2. Da Roit, B. (2012). The Netherlands: the struggle between universalism and cost
    containment. Health and Social Care in the Community, 20(3), 228–237. doi:10.1111/j.1365-2524.2011.01050.x
  3. Government of The Netherlands. (2013). Issues, healthcare and support.
    http://www.government.nl/issues/healthcare-and-support/changes-in-the-way-care-and-support-are-organised-as-of-1-january-2015. Accessed January 22, 2015.
  4. ZonMw. http://www.nationaalprogrammaouderenzorg.nl/english/the-national-care-for-the-elderly-programme/ Accessed January 22, 2015.


Perceived control in health care

Contact: Martijn Huisman


Background
In Western welfare states, for example in the Netherlands, governments currently advocate self-reliance among the aging population. This implies that older people are expected to manage their own health and to take care of themselves in their own homes as much as possible; support from people in one’s social network should be addressed first before turning to government support (Government of the Netherlands – changes in the way care and support are organised as of 1 january 2015). Underlying reasons for this approach are related to various factors, e.g. cost containment, new ideas about fostering empowerment of care consumers (Da Roit, 2012). The complexity of today’s health care may, however, undermine perceived control in health care among older adults. Especially for older adults with multiple or complex care needs, living in a society that strives for people’s self-reliance, perceived control in care may be at issue.

To enable quantitative research on how perceived control is related to care-related outcomes such as quality of care, and to quality of life, we developed an operational definition and a measurement instrument of perceived control in health care.

Manual of the questionnaire (Dutch)
The manual includes detailed information about the key characteristics of the questionnaire, such as contents, validity/reliability, scoring, user information (pdf).

In short, the instrument consists of 29 items, addressing both people’s perceived own abilities in the context of (in)formal care and the perceived support from the social network. Topics incorporated in the questionnaire are ‘organising professional care’, ‘communication with health care professionals’, ‘health management in the home situation’, ‘planning (more) complex care in the future’, and ‘perceived support from the social network’.
Based on Factor Analysis three subscales were identified:

I. ‘perceived personal control in health care’ (13 items: 5 – 15, 17, 18)
II. ‘anticipated personal control regarding future health care’ (3 items: 21 – 23)
III. ‘perceived support from the social network’ (3 items: 25, 26, 28)

Cronbach’s Alpha of these scales is .90, .71, and .77 respectively. Construct validity was supported by correlations of the subscales with associated concepts, i.e. sense of mastery, self-efficacy, self-esteem (correlations with subscale I: r = .31 – .35; with subscale II: r = .19 – .25), and social loneliness (correlation with subscale III: r = -.42).

Scores of all Part B items (5 – 29) can be averaged, including those that were not integrated in one of the subscales (16, 19, 20, 24, 27, 29), to reflect the overall level of perceived control. Furthermore, item 1 provides an overall score of the perceived ‘own’ control in care. Lastly, average scores can be calculated for each subscale separately. Three missings (apart from the ‘na’ answers) are allowed for calculating the overall Part B score and for scale I; no missings are allowed for calculating scale II and III. Details of the validation study will be provided in a publication, expected in 2015.

Questionnaire
The ‘perceived control in health care’ questionnaire is available in English and Dutch for both versions of interviewer and self-report administration, LASAHR01/LASAHR02 (English interview / English self-report / Dutch interview / Dutch self-report).

Variable information
‘Perceived control in health care’ LASAHR01/LASAHR02 (pdf).

References

  1. Da Roit, B. (2012). The Netherlands: the struggle between universalism and cost
    containment. Health and Social Care in the Community, 20(3), 228–237. doi:10.1111/j.1365-2524.2011.01050.x
  2. Government of The Netherlands. (2013). Issues, healthcare and support.
    http://www.government.nl/issues/healthcare-and-support/changes-in-the-way-care-and-support-are-organised-as-of-1-january-2015. Accessed January 22, 2015.