Implementing Patient and Carer Participation in Self-Care and Co-Care in Sweden: Policy, Practice and the Future of Person-Centred Care

Abstract

In this chapter we present how Sweden has conceptualized patient-, citizen- and carer- engagement and participation at different levels: (a) in formulating policy for health and healthcare, (b) in decisions and planning the overall structure of a healthcare system, including the siting of services, (c) in designing the organization of care at a service level, (d) in planning and taking part in their own individual care and (e) in providing information about outcomes of care and experiences of care. The model is based on co-care and enables self-care to reduce the widening gaps between needs and supply and between cost and affordability. It also mobilizes certain changes and more use of modern change sciences to help to move healthcare towards the more person-centred services represented by self-care and co-care approaches.

Appendices

Appendix 4.1: Definitions

Table 4.1 Definitions used in this chapter

Appendix 4.2: Patient Evaluation of Co-Care Survey (PECS) (Degsell and Øvretveit 2018)

• 1. Does your illness make everyday activities more difficult?

  (0 not at all, 1 a little, 2 yes but no major difficulties, 3 yes quite difficult, 4 yes very difficult, 5 yes because of my illness it is impossible to perform many activities important to me).

• 2. Has any care provider asked you which activities your disease makes difficult for you to carry out?

  (2 yes, 1 no, 0 don’t know)

• 3. If yes to 2) have they asked you whatyouwant the treatment or care to help you to do, or what you want the goals of treatment or care to be?

  (2 yes, 1 no, 0 don’t know)

• 4. If yes to 3) or 2) how much do you think they considered your views about which activities your disease makes difficult, when they were advising you about your treatment and care?

  (0 not at all, 1 they know but do not seem to have considered this, 2 they have taken this into consideration a little, 3 they are very good at discussing which treatment and care choices are best for helping with different activities that are important to me)

• 5. Have they asked you what you are doing yourself to make living with your illness less difficult?

  (2 yes, 1 no, 0 don’t know)

• 6. If yes to 2 or 3, have they discussed with you what you could do yourself so as to be able to carry out activities important to you which your illness is making more difficult?

  (0 not at all, 1 they suggested some things but did not discuss how I could arrange my life differently to be able to do these things, 2 they suggested some things and we discussed how I could arrange my life differently to be able to do these things)

• 7. Have you discussed with other patients what they do themselves to be able to carry out activities important to them which their illness is making more difficult?

  (2 yes, 1 no, 0 don’t know)

• 8. Have healthcare or other services made it possible to meet with other patients to share and discuss what they do themselves to carry out activities important to them which their illness is making more difficult?

  (2 yes, 1 no, 0 don’t know, 3 not healthcare but other services)