Improving Caregivers' Involvement in Decision Making With Seniors

As the population ages, the role of caregivers for seniors becomes more important, and the idea of patient engagement is expanding to include caregiver engagement.

Interventions are needed to help caregivers’ access information, get help with decision support, and discuss values to help them become more involved in decision making with the seniors they care for, according to a new study in the April 2016 issue of Health Affairs. Canadian researchers led by Mirjam M. Garvelink, PhD, of the Population Health and Practice-Changing Research Group of the Research Centre, CHU De Quebec-University Laval, said caregivers’ needs for support are often not met. The study found that one (and only one) intervention studied led to significant improvement: adding a trained decision guide to healthcare teams, using decision aids, and training healthcare teams in shared decision making.

The study investigated the effectiveness of interventions to improve caregivers’ involvement in decision making with seniors who they care for, and described caregivers’ experiences of decision making in the absence of interventions. They concluded that while seniors need support in making health decisions, the data clearly show that for caregivers to support their loved ones adequately, caregivers need support as well. Many caregivers reported negative feelings about decision making and its consequences, even long after decisions were made.

The researchers assessed the effectiveness of interventions aimed at helping caregivers be more involved in decision making with seniors and to describe how caregivers experience decision making in the absence of interventions to engage them. The study analyzed data from 49 qualitative, 14 quantitative, and 3 mixed-methods studies of decision-making characteristics, which were analyzed separately and by triangulating data into a theoretical framework. Study participants came from a variety of ethnic groups and nationalities.

Four interventions were identified: 3 decision aids and 1 multifaceted intervention that involved the addition of a trained family support specialist to the usual clinical team. Decisions studied, and mentioned most often by caregivers, were about location of care and end-of-life care. Unfamiliarity or frustration with the healthcare system; busy doctors, long waiting times, or not enough time for full explanations were aspects of decisions that were mentioned most often. Different stages in the seniors’ illness or its acuteness and physical environment and availability of support were also mentioned, along with difficult time constraints.

“Our findings indicate that effective interventions are needed to improve caregivers’ involvement in decision making,” the authors wrote.

Changes to the decision-making environment could help, for example, adding a trained decision guide to healthcare teams in shared decision making. Furthermore, rigorous evaluation of the effectiveness of all caregiver interventions is urgently needed.