Family experience with decision-making

How family members rated their involvement in making decisions about their loved one’s care. (see data dictionary)

What do you think?

Whether you’re a resident, family member, provider, or health system administrator, thinking about why these differences might exist can start or inform conversations and lead to solutions for improved quality of healthcare.

Understanding “family experience with decision-making”

In a survey conducted from May to October 2017, the HQCA asked family members of residents living in long term care:

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 member 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 differing views or opinions, how are resident and family member preferences balanced? 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?
  • For family members and loved ones who are not the primary decision-maker, 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.)?
  • Which Long-Term Care 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?

For information about the HQCA’s long term care family experience survey, please visit the HQCA website.

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 long-term care’s performance in these dimensions of quality:

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Dimensions of Quality

  • Acceptability 
  • Accessibility 
  • Appropriateness 
  • Effectiveness 
  • Efficiency 
  • Safety