The acute care experience of older persons with cognitive impairment and their families: A qualitative study

Abstract

BackgroundAn increase in older persons with pre-existing cognitive impairment requiring inpatient services for co-occurring acute illness has produced a need for acute care processes to be re-designed. This in particular as this patient group is at risk of receiving insufficient care, resulting in adverse health and functional outcomes as well as family burden. Thus, to improve and sustain quality care over time, there is a need for an in-depth understanding of acute care processes from the perspective of persons with cognitive impairment and their families. ObjectivesTo generate an in-depth understanding of the experiences of acute care processes and the needs of older, hospitalized, older persons with cognitive impairment and their family members. DesignA qualitative study using inductive content analysis. Setting and participantsThe study was conducted at two urban, university-affiliated tertiary care hospitals in Switzerland. Eighteen families, represented by seven older persons with cognitive impairment and 20 family members were recruited into the study from six units. MethodsSemi-structured, narrative individual or dyadic interviews (n = 19) were conducted over a six-month period in 2017. The interview data were analyzed using inductive content analysis strategies. ResultsPersons with cognitive impairment and their families described a wide range of acute care experiences that oscillated between supportive and unsupportive, comprehensive and fragmented, as well as proactive family engagement and none. Seven core dimensions were identified as constituting the acute care experience from participants’ perspective. In relation to care for persons with cognitive impairment, caring attentiveness and responsiveness were important, whereas family members valued access to staff and information, participation in care, and support over time. On a system level, available resources and the hospital infrastructure were integral to their experience of hospitalisation. ConclusionsParticipants gave manifold examples of good care. However, they reported that their specific needs and preferences were not always identified or met. Family members understood themselves as integral to the well-being of their hospitalized older member with cognitive impairment. Therefore, they need to be recognized and involved in acute care processes, and supported in their caregiving. The study shows the need and ways to move towards person- and family-centered models of care. System-wide initiatives that translate knowledge into practice and ensure a skilled workforce with sufficient resources are called for.