Family experience with decision-making | HQCA Focus

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Designated Supported Living

Family experience with decision-making

How family members rated how often they were involved in making decisions about their loved one’s care, in a 2019 survey. (see data dictionary)

What do you think?

  • Why does family member involvement in decision-making matter?
  • How are family experience results for decision-making different in long term care? Why are they different?

Understanding “family experience with decision-making”

In a survey conducted in 2019, the HQCA asked family members of residents living in designated supportive living:

In the last six months, how often were you involved as much as you wanted to be in the decisions about your family member’s care?

Family members could choose “Never / Sometimes / Usually / Always”

From the HQCA survey results, family member overall experience of care is likely better when they feel involved with their loved one’s care. Family members particularly appreciate when staff keep them informed, and support their involvement in care. This is also a key pillar in patient and family centred care.

Considerations when viewing the results:

There are a number of factors providers and leaders can consider if looking to improve family members involvement in decision-making about their loved one’s care. Before taking action, consider the following:

  • This question says “as much as [they] wanted” to be involved, because family members’ preference for level of involvement can differ. How are family members being engaged by site staff to understand how much they want to be involved? How can the site communicate their openness to family involvement? How are those expectations being set together? How are the outcomes of those discussions being shared with the broader care team?
  • How can a site make sure those expectations for involvement are honoured as much as possible?
  • In what contexts are family members involved in care (e.g., family conferences)? Who is involved in these opportunities, including both provider and resident and family representatives, and how often do they occur?
  • To what extent can family members be involved in their loved one’s care? How can those who might not be the primary decision-maker be involved in decision-making? Sometimes, the family member answering the survey may not be entitled to all the information they feel they need, and may not be the one who is entitled to attend or participate in care conferences.
  • To what extent should family members be involved in their loved one’s care?
  • When there are differing views or opinions, how are resident and family member preferences balanced? How does the role of primary decision-maker factor in? When there are multiple family members or loved ones involved, what are some effective approaches to facilitating these discussions? How are staff trained or educated about how to navigate these potentially challenging and emotional conversations?
  • How are relationships established and maintained between a family member and their loved one’s case manager?
  • How do family members know who to ask for information about their loved one’s care?
  • What are other barriers family members may face to feeling involved in decisions about their loved ones care and services? Could barriers beyond the site’s control be a factor (e.g., geographic, language, privacy legislation, etc.)?
  • Residents in designated supportive living may be more independent than residents in long-term care. How might this impact the family members’ desire or need to be informed about the residents’ care and services?
  • Which Supportive Living Accommodation Standard(s) does this question help inform, if any?
  • Which Continuing Care Health Service Standard(s) does this question help inform, if any?
  • Who should be involved in discussions to improve these results? How could residents and/or family members be engaged to develop solutions (e.g., engage the resident and family council)? What other collaboration might be required to make improvements in this area?
  • A site may only be directly accountable for one type of staff. For example, in designated supportive living, case management and sometimes nursing care are delivered by Alberta Health Services, while other services like care aides and housekeeping are managed by a housing provider or site operator. How can providers collaborate to make sure improvements are embraced by all staff?

For information about the HQCA’s designated supportive living family experience survey, please visit the HQCA website.

Alberta Quality Matrix for Health

The Health Quality Council of Alberta uses the Alberta Quality Matrix for Health as a way of organizing information and thinking around the complexity of the healthcare system. This measure can be used as input to assess supported living’s performance in this dimension of quality: Acceptability.