Rural Patient Experiences of Accessing Care for Chronic Conditions: A Systematic Review and Thematic Synthesis of Qualitative Studies

Abstract

PURPOSE Access to health care is a long-standing concern for rural patients; however, administrative measures fail to capture the subjective patient experience of accessing health care. The purpose of this review was to synthesize the qualitative literature on patient and caregiver experiences of accessing health care services for chronic disease management among US residents of rural areas. METHODSWe searched Embase, MEDLINE, PsycInfo, CINAHL, and Scopus to identify qualitative studies published during 2010-2019. A thematic synthesis approach was used to analyze findings from included studies. RESULTS A total of 62 studies involving 1,354 unique participants were included. The largest share of studies (24.2%) was focused on the experience of patients with cancer, followed by behavioral health (16.1%), HIV and AIDS (14.5%), and diabetes (12.9%). We identified 4 primary analytic themes of barriers and facilitators associated with the experience of accessing health care services for chronic disease management in rural areas: (1) navigating the rural environment, (2) navigating the health care system, (3) financing chronic disease management, and (4) rural life (ie, common elements of a distinct "rural" way of thinking and behaving).CONCLUSIONS In this comprehensive review, we found that important cultural, structural, and individual factors influenced the rural patient's experience of health care access and use, including barriers and facilitators posed by geographic and built environments, and distinct rural mores. Our findings can inform policies and programs that both facilitate structural aspects of access and include culturally appropriate interventions.

Community engagement strategies to promote recruitment and participation in clinical research among rural communities: A narrative review

“…Some factors contributing to this are that rural populations in America face several barriers to healthcare compared to urban and suburban populations, and clinical research studies are often offered as part of medical encounters [ 4 ]. Barriers to accessing healthcare in rural communities include geographical distances to medical facilities requiring extensive travel and lodging costs, lack of public transportation, stigma, and distrust of the healthcare system [ 5 , 6 ]. Representation of rural populations in clinical research is necessary to understand and deploy effective health care strategies that can benefit all rural individuals, increasing the generalizability and equity of research findings.…”

“We Operate as an Organ”: Parent Experiences of Having a Child With Type 1 Diabetes in a Rural Area

“…For example, participants across studies shared that rural communities tend to value self-reliance and stoicism, leaving them feeling like they needed to “power through” chronic illness or else experience a feeling of failure to live up to their responsibilities to their family and community. 12…”

“…10,11 Qualitative studies on the experiences of individuals with chronic illnesses living in rural areas shed light on additional burdens. In a thematic synthesis of 62 qualitative studies, Golembiewski et al 12 described challenges navigating care in the rural environment, such as lengthy travel for routine health services, reliance on social supports for transportation, and suboptimal quality of clinicians, services, and technology in their local area; challenges navigating the health care system, such as delays in care trying to obtain appointments, lengthy wait times during appointments, and disjointed care; and challenges affording care, such as high health care costs being compounded by costs of travel to appointments, overnight lodging in some cases, and time away from work in addition to a backdrop of economic hardship. Individuals also experienced a disconnect between illness experience and rural culture.…”

“…For example, participants across studies shared that rural communities tend to value self-reliance and stoicism, leaving them feeling like they needed to "power through" chronic illness or else experience a feeling of failure to live up to their responsibilities to their family and community. 12 Approximately 61% of individuals living in Vermont live in rural areas, 13 with Maine and Vermont having the highest proportion of population living in rural areas in the United States. 13 Simultaneously, Vermont is estimated to have the highest prevalence rate of T1DM among people age 19 and younger in the United States, with an estimated prevalence of 79.6/10 000 person-years.…”

Beyond the Fight: Why President Biden's Cancer Moonshot Must Include Palliative Care

“…1 Those in rural areas and individuals from vulnerable populations know the cancer experience to be marked by failures of access, financial distress, and unmet support needs. [15][16][17][18][19][20][21][22] Similar to all other aspects of our health care system, underserved groups experience disparities in both receipt of cancer-directed therapies and referral to palliative care 23 despite the strong evidence base for its benefits. Barriers contributing to this disparity may include the palliative care specialist shortage which is exacerbated in underserved communities, 24,25 implicit bias affecting clinician-patient communication about serious illness, 26,27 and wellearned distrust of the medical establishment among minority patients.…”