Dataset Information

Multimorbidity and its effect on perceived burden, capacity and the ability to self-manage in a low-income rural primary care population: A qualitative study.

ABSTRACT:

Introduction

Multimorbidity is increasing in prevalence, especially in low-income settings. Despite this, chronic conditions are often managed in isolation, potentially leading to burden-capacity imbalance and reduced treatment adherence. We aimed to explore, in a low-income population with common comorbidities, how the specific demands of multimorbidity affect burden and capacity as defined by the Cumulative Complexity Model.

Materials and methods

Qualitative interviews with thirteen rural community health centre patients in Victoria, Australia. Participants were aged between 47-72 years and reported 3-10 chronic conditions. We asked about perceived capacity and burden in managing health. The Theory of Patient Capacity was used to analyse capacity and Normalisation Process Theory to analyse burden. All data specifically associated with the experience of multimorbidity was extracted from each burden and capacity domain.

Results

The capacity domains of biography, resource mobilisation and work realisation were important in relation to multimorbidity. Conditions causing functional impairment (e.g. chronic pain, depression) interacted with physical, psychological and financial capacity, leading to biographical disruption and an inability to realise treatment and life work. Despite this, few people had a treatment plan for these conditions. Participants reported that multimorbidity affected all burden domains. Coherence and appraisal were especially challenging due to condition interactions, with clinicians providing little guidance.

Discussion

The capacity and burden deficits highlighted by participants were not associated with any specific diagnosis, but were due to condition interactions, coupled with the lack of health provider support to navigate interactions. Physical, psychological and financial capacities were inseparable, but rarely addressed or understood holistically. Understanding and managing condition and treatment interactions was a key burden task for patients but was often difficult, isolating and overwhelming. This suggests that clinicians should become more aware of linkages between conditions, and include generic, synergistic or cross-disciplinary approaches, to build capacity, reduce burden and encourage integrated chronic condition management.

SUBMITTER: Hardman R

PROVIDER: S-EPMC8351969 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundThe challenges of chronic disease self-management in multimorbidity are well-known. Shippee's Cumulative Complexity Model provides useful insights on burden and capacity factors affecting healthcare engagement and outcomes. This model reflects patient experience, but healthcare providers are reported to have a limited understanding of these concepts. Understanding burden and capacity is important for clinicians, since they can influence these factors both positively and negatively. This study aimed to explore the perspectives of healthcare providers using burden and capacity frameworks previously used only in patient studies.MethodsParticipants were twelve nursing and allied health providers providing chronic disease self-management support in low-income primary care settings. We used written vignettes, constructed from interviews with multimorbid patients at the same health centres, to explore how clinicians understood burden and capacity. Interviews were recorded and transcribed verbatim. Analysis was by the framework method, using Normalisation Process Theory to explore burden and the Theory of Patient Capacity to explore capacity.ResultsThe framework analysis categories fitted the data well. All participants clearly understood capacity and were highly conscious of social (e.g. income, family demands), and psychological (e.g. cognitive, mental health) factors, in influencing engagement with healthcare. Not all clinicians recognised the term 'treatment burden', but the concept that it represented was familiar, with participants relating it both to specific treatment demands and to healthcare system deficiencies. Financial resources, health literacy and mental health were considered to have the biggest impact on capacity. Interaction between these factors and health system barriers (leading to increased burden) was a common and challenging occurrence that clinicians struggled to deal with.ConclusionsThe ability of health professionals to recognise burden and capacity has been questioned, but participants in this study displayed a level of understanding comparable to the patient literature. Many of the challenges identified were related to health system issues, which participants felt powerless to address. Despite their awareness of burden and capacity, health providers continued to operate within a single-disease model, likely to increase burden. These findings have implications for health system organisation, particularly the need for alternative models of care in multimorbidity.

Project description:BackgroundData is needed about barriers to self-collection of Human Papillomavirus (HPV) samples and cytology among low-income, disadvantaged women living in rural areas of lower-income countries as these women are at increased risk of cervical cancer mortality.MethodsIndividual interviews (n = 29), focus groups (n = 7, 5-11 participants) and discussion groups (n = 2, 18-25 participants) were organized with women from three indigenous ethnic groups residing in rural areas in Mexico, after they were provided with free, self-sampled HPV tests. These groups are low-income, underserved by healthcare and have historically been on the receiving end of racism and social exclusion. Descriptive, qualitative content analysis was done, including two cycles of coding.ResultsInterview and focus/discussion group data indicate women had limited understanding of HPV's role in cervical cancer etiology. They identified HPV's existence, that cytology detects cervical cancer, the need for regular testing and that cervical cancer is sexually transmitted. Organizational barriers to clinic-based cytology included irregular supplies of disposable speculums, distance to clinics and lack of clear communication by healthcare personnel. Women considered self-collected HPV-testing easy, less embarrassing and less painful than cytology, an opportunity for self-care and most felt they understood how to take a self-sample after a 20-min explanation. Some women feared hurting themselves when taking the self-sample or that they would take the sample incorrectly, which they worried would make the test useless. Attending HPV-testing in groups facilitated use by allowing women to discuss their doubts and fears before doing self-collection of the sample or to ask other women who were the first to do the self-sampling what the experience had been like (whether it hurt and how easy it was). Lack of indoor bathrooms was a barrier to doing HPV self-sampling at home, when those homes were resource-poor (one-room dwellings).ConclusionsLow-income, indigenous Mexican women residing in rural, underserved areas identified their need for cervical cancer screening but encountered multiple barriers to cytology-based screening. They found a number of advantages of HPV self-sampled tests. Employing self-collected HPV-testing instead of cytology could resolve some but not all gender-related, organizational or technical quality-of-care issues within cervical cancer detection and control programs.

Project description:BackgroundHearing loss (HL) can affect communication in complex ways. Understanding how adults with HL reflect on and conceptualise the way they listen (metacognition) is required if interventions, and the outcome measures used to evaluate them, are to address barriers to functional communication arising from HL.ObjectivesThis study describes how adults with HL experience and report the processes, behaviours, and components of listening, as presented in published studies.DesignSystematic review and meta-synthesis of qualitative studies.MethodsSystematic searches identified English-language, peer-reviewed journal articles reporting the results of qualitative or mixed-methods studies of adults' with HL perceived listening abilities. Medline, PsychInfo, Web of Science, Embase, and Google Scholar were searched from inception to November 2021. Handsearching reference lists of included studies identified additional studies for inclusion. The Critical Appraisal Skills Programme (CASP) qualitative checklist was used to appraise studies' methodological quality. Data from included studies were analysed using thematic meta-synthesis. The Grading of Recommendations Assessment, Development and Evaluation (GRADE) Confidence in the Evidence from Reviews of QUALitative (CERQual) approach assessed confidence in the review findings. Two reviewers independently completed all screening and quality appraisal. Thematic meta-synthesis and GRADE CERQual assessment was completed by one reviewer and confirmed by a second reviewer. Discrepancies were resolved through discussion.ResultsData from 46 studies were included in the review. Thematic meta-synthesis identified six descriptive themes: 1) perceived listening ability; 2) external modifiers; 3) psychosocial impacts of hearing loss; 4) communication partner perspectives; 5) self-efficacy for listening; and 6) cognitive load. GRADE CERQual ratings for descriptive themes ranged from low to moderate confidence. Descriptive themes were related by analytic themes of liminality and reciprocity.ConclusionsAdults with HL provide in-depth accounts of components and processes of listening, with studies reporting both cognitive and affective experiences consistent with theoretical models of metacognition. The findings will inform content generation for a hearing-specific patient-reported outcome measure of perceived listening ability in everyday communication.