“It's a fight to get anything you need” — Accessing care in the community from the perspectives of people with multimorbidity

Abstract

BackgroundThere is a growing interest in redesigning health‐care systems to better manage the increasing numbers of people with multimorbidity. Knowing how patients experience health‐care delivery and what they need from the health‐care system are critical pieces of evidence that can be used to guide health system reforms.ObjectiveThe purpose of this study was to understand the challenges patients with multimorbidity face in accessing care in the community, and the implications for patients and their families.MethodsA secondary analysis of qualitative data was conducted on semi‐structured interviews with 116 patients who were receiving care in an urban rehabilitation facility in 2011. Exploratory interpretive analysis was used to identify themes about access to care.ResultsChallenges occurred at two levels: at the health system level and at the individual (patient) level. Issues at the health system level fell into two broad categories: availability of services (failing to qualify, coping with wait times, struggling with scarcity and negotiating the location of care) and service delivery (unreliable care, unmet needs, incongruent care and inflexible care). Challenges at the patient level fell into the themes of logistics of accessing care and financial strain. Patients interacted and responded to these challenges by: managing the system, making personal sacrifices, substituting with informal care, and resigning to system constraints.ConclusionIdentifying the barriers patients encounter and the lengths they go to in order to access care highlights areas where policy initiatives can focus to develop appropriate and supportive services that are more person and family‐centred.

Fatores associados ao acesso precário aos serviços de saúde no Brasil

“…People with poor/very poor self-rated health showed the highest prevalence of poor access to health services. This classification of self-rated health might be related to a high number of morbidities, fragility, and other health conditions, leading to a greater need for using the service and a high chance of facing access barriers 34,35 .…”

The complexity of caregiving for community-living older adults with multiple chronic conditions: A qualitative study

“…25 Health care services and systems are generally focused on single conditions, often resulting in fragmented and poorly coordinated care that is not person-centered for older persons with MCC. [26][27][28] Furthermore, these services are directed to the person living with MCC and seldom address the needs of caregivers. 29,30 Even guidelines for the assessment and management of MCC have minimal focus on the needs of caregivers.…”

The experience of financial burden for people with multimorbidity: A systematic review of qualitative research

“…Seven of these studies 35‐41 aimed to research financial burden or a related concept. The remaining 39 studies 34,42‐79 researched several issues including self‐management, 42,44‐46,48,55,57,60 adherence 43,52,56,62,64 and living with multimorbidity 63,66,67,70,75 . There were 4,364 unique participants in total.…”

“…Two studies, 73,74 used online questionnaires and included 2,689 participants, while the remaining 44 studies included 1,675 participants. From the forty‐one studies 36‐47,49‐68,70‐79 reporting participants’ gender, 1,386 (63.3%) were male, 799 (36.5%) were female, one (0.0004%) was a transgender female and two (0.001%) were described as ‘other’. The mean age for participants was 53.6 years (from 28 studies 36,37,39,40,43‐45,47‐50,52,53,56,59‐61,63,65‐68,71,74‐78 ).…”