Perceived risk factors of health decline: a qualitative study of hospitalized patients with multimorbidity

Abstract

BackgroundEffectively preventing and managing chronic illness are key goals for health systems worldwide. A growing number of people are living longer with multiple chronic illnesses, accompanied by a high degree of treatment burden and heavy use of health care resources. People with multimorbidity typically have to manage their care needs for a number of years, and from this experience may offer valuable perspectives on factors that influenced their health outcome.PurposeThe purpose of this study was to explore factors that may serve as tipping points into poor health from the perspective of hospitalized patients with multimorbidity.Participants and methodsPatient interview data were analyzed from 43 hospitalized patients with multimorbidities who indicated that something could have been done to either avoid or slow down their health decline. The study used qualitative description as the analytic method to generate themes from a specific question collected through one-on-one interviews. Two reviewers independently analyzed and thematically coded the data and reached consensus on the final themes after a series of meetings.ResultsAccording to patient accounts, factors at the personal level (eg, personal behaviors), provider level (eg, late diagnoses), and health care system level (eg, poor care transitions) contributed to their health decline.ConclusionThis paper focuses on prevention in the context of multimorbidity. While some respondents indicated personal behaviors that impacted health, many pointed to factors outside themselves (providers and the broader health system). The orientation of health care systems, historically designed to support acute and episodic care and not multimorbidity, places patients, at least in some cases, at additional risk of decline. The patient accounts suggest that the notion of prevention should evolve throughout the course of illness. A successful health system would embrace this notion and see the goal as forestalling not only mortality (as achieved for the most part in high socioeconomic nations) but morbidity as well. High rates of multimorbidity and health system challenges suggest that we have not yet achieved this latter aim.

Experiences of hospital care for people with multiple long-term conditions: a scoping review of qualitative research

“…Of all studies in the review, thirty-one (75.6%) reported findings relating to processes of interprofessional communication and service integration in specialist care settings. Interestingly, findings from all three participant groups identified similar issues, such as the siloed nature of specialties leading to fragmented care [ 42 , 48 , 49 , 52 , 64 , 84 , 86 ] and poor care continuity [ 37 , 51 , 58 , 80 ], lack of clarity of responsibility [ 52 , 54 , 61 , 71 , 72 , 86 ], insufficient interprofessional communication [ 35 , 60 , 66 , 71 , 78 ] and a perception that specialists were unwilling to offer medical advice beyond their area of expertise [ 44 , 58 , 78 ]. Limited functionality of electronic health record systems was noted by healthcare professionals to perpetuate these experiences, impacting on the reliability of medication history [ 37 , 52 , 83 ] and, in some instances, positioning people living with MLTC as the source of information for healthcare professionals [ 37 , 46 ].…”

“…Twelve studies (29.3%), seven of which included people living with dementia, presented data relating to decision-making processes in hospital care for people with MLTC. Studies from the perspective of people living with MLTC highlighted the need for greater involvement in decision-making and the opportunity to share the important aspects of their conditions with healthcare professionals [ 50 , 66 , 70 ]. Building a trusting collaborative relationship between people with MLTC, informal caregivers, and staff was perceived to require time and consistency in two studies reporting the perspectives of staff and informal caregivers [ 69 , 74 ].…”

“…Thirteen studies (31.7%) highlighted support from informal caregivers as a key element in the experience of MLTC hospital care, with some studies finding that family members assumed the roles of advocacy and care coordination [ 56 , 62 , 73 ]. In studies including the patient perspective, the absence of an involved family member could reduce access to support [ 44 , 66 , 82 ]. Two studies offering insights into caregiver perspectives suggested that healthcare professionals needed to understand the level of caregiver involvement, assess their ability to provide support to their relative and understand the impact of ageing on caregivers’ abilities to continue to provide support [ 56 , 75 ].…”

“…However, studies focussed on the experiences of a single person providing support, which rests on the assumption that only one person undertakes a caregiving role, and neglects broader supportive networks that some people with MLTC may have. Only a few studies [ 44 , 66 ] articulated experiences of people with MLTC who did not have informal support. The limited evidence available suggests that lack of such support could affect access to services, which warrants further investigation.…”