The Perspectives of Patients on Health-Care for Co-Morbid Diabetes and Chronic Kidney Disease: A Qualitative Study

Lo, Clement; Ilić, Dragan; Teede, Helena; Cass, Alan; Fulcher, Greg; Gallagher, Martin; Johnson, Gearold R.; Kerr, Peter G.; Th, Mathew; Murphy, Kylie; Polkinghorne, Kevan R.; Walker, Rowan G.; Zoungas, Sophia

doi:10.1371/journal.pone.0146615

Cited by 44 publications

(108 citation statements)

References 35 publications

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“…One of the key findings from this study was that there is a long lasting emotional impact that results from receiving renal diet advice, and an ongoing emotional burden associated with applying this advice. Similar to previous research (White & Grenyer 1999;Low et al 2014;Lo et al 2016;Morris et al 2017), patients felt poorly equipped to deal with the challenges and complexity of dietary changes required. Interestingly, the emotional experience of carers was similar to that of patients.…”

Section: Discussionsupporting

confidence: 53%

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How do patients and carers make sense of renal dietary advice? A qualitative exploration

Lambert

Mansfield

Mullan

2018

Journal of Renal Care

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SUMMARY Background Dietary modification is an integral part of chronic kidney disease (CKD) management. However, adherence to the renal diet is often suboptimal. Methods The aims of this study were to (i) describe the experiences of patients with CKD and their carers in their process of interpreting and implementing renal dietary advice; (ii) to explore strategies they used to make sense of and apply renal diet information and (iii) to develop recommendations for improved clinical practice. To achieve these aims, individual semi‐structured interviews with 26 patients and 10 carers were conducted, using interview questions guided by Sensemaking theory. Findings Six themes emerged from the data which did not differ according to CKD stage, geographic location or renal replacement therapy (RRT) type. The renal diet was perceived by patients and carers to be overwhelming, frustrating and emotionally demanding; as well as being complex and challenging. To help make sense of and apply renal dietary advice, participants highly valued the input of the dietitian; and patients believed that their carer support was important. Individual problem‐solving strategies were developed by participants to help them make sense of the renal diet, and many of them expressed a desire for additional resources and/or support. Conclusions This study highlights that learning to make sense of renal diet information is an emotionally challenging journey for patients and carers. In addition to utilising the expertise of dietitians, carer support was perceived to be integral to learning and using renal dietary advice. The study describes a number of important problem‐solving strategies utilised by patients and carers, as well as recommendations to help improve sensemaking and adherence to the renal diet.

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Section: Discussionsupporting

confidence: 53%

“…; Lo et al . ; Morris et al . ), patients felt poorly equipped to deal with the challenges and complexity of dietary changes required.…”

Section: Discussionmentioning

confidence: 99%

How do patients and carers make sense of renal dietary advice? A qualitative exploration

Lambert

Mansfield

Mullan

2018

Journal of Renal Care

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“…For example, in the Data Availability Statement for their qualitative study recently published in PLOS Medicine , Christopoulos et al (2015) stated, “Public availability of data could potentially compromise participant privacy. Participants did not consent to have their full transcripts or excerpts of transcripts made publically [ sic ] available.” Qualitative studies published in PLOS One subsequent to the PLOS policy adoption have made similar claims (Natoli et al, 2015; Tang et al, 2015) (although there have also been notable, and welcome, exceptions (Lo et al, 2016)).…”

Section: Data Sharing In Qualitative Researchmentioning

confidence: 81%

Promises and pitfalls of data sharing in qualitative research

Tsai

Kohrt

Matthews

et al. 2016

Social Science & Medicine

108

118

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The movement for research transparency has gained irresistible momentum over the past decade. Although qualitative research is rarely published in the high-impact journals that have adopted, or are most likely to adopt, data sharing policies, qualitative researchers who publish work in these and similar venues will likely encounter questions about data sharing within the next few years. The fundamental ways in which qualitative and quantitative data differ should be considered when assessing the extent to which qualitative and mixed methods researchers should be expected to adhere to data sharing policies developed with quantitative studies in mind. We outline several of the most critical concerns below, while also suggesting possible modifications that may help to reduce the probability of unintended adverse consequences and to ensure that the sharing of qualitative data is consistent with ethical standards in research.

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“…Twelve focus groups were conducted with 58 patients, with a further six focus group performed with 35 tertiary health professionals and four focus groups with 22 GPs. Semi‐structured interviews were conducted with eight care‐givers and eight heads of specialist units A quantitative study of GPs evaluating the commonest reported health‐service barriers to health‐care.…”

Section: Co‐designing An Evidence‐based Model Of Care For Patients Wimentioning

confidence: 99%

“…The detailed methodology and results of these qualitative and quantitative studies have been previously published …”

Section: Co‐designing An Evidence‐based Model Of Care For Patients Wimentioning

confidence: 99%

Models of care for co‐morbid diabetes and chronic kidney disease

Zimbudzi

Teede

et al. 2018

Nephrology

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The review outlines the development of a model of care for patients with diabetes mellitus and chronic kidney disease, involving the multiple stake holders. Other distinctive features of this model of care are routine screening for psychological morbidity; patient-support through a phone advice line; and focused primary health-care support in the management of diabetes and CKD. ABSTRACT:Diabetes and chronic kidney disease (CKD) are two of the most prevalent co-morbid chronic diseases in Australia. The increasing complexity of multi-morbidity, and current gaps in health-care delivery for people with co-morbid diabetes and CKD, emphasize the need for better models of care for this population. Previously, proposed published models of care for comorbid diabetes and CKD have not been co-designed with stake-holders or formally evaluated. Particular components of health-care shown to be effective in this population are interventions that: are structured, intensive and multifaceted (treating diabetes and multiple cardiovascular risk factors); involve multiple medical disciplines; improve self-management by the patient; and upskill primary health-care. Here we present an integrated patient-centred model of health-care delivery incorporating these components and co-designed with key stake-holders including specialist health professionals, general practitioners and Diabetes and Kidney Health Australia. The development of the model of care was informed by focus groups of patients and health-professionals; and semi-structured interviews of care-givers and health professionals. Other distinctives of this model of care are routine screening for psychological morbidity; patient-support through a phone advice line; and focused primary health-care support in the management of diabetes and CKD. Additionally, the model of care integrates with the patient-centred health-care home currently being rolled out by the Australian Department of Health. This model of care will be evaluated after implementation across two tertiary health services and their primary care catchment areas.

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The Perspectives of Patients on Health-Care for Co-Morbid Diabetes and Chronic Kidney Disease: A Qualitative Study

Cited by 44 publications

References 35 publications

How do patients and carers make sense of renal dietary advice? A qualitative exploration

How do patients and carers make sense of renal dietary advice? A qualitative exploration

Promises and pitfalls of data sharing in qualitative research

Models of care for co‐morbid diabetes and chronic kidney disease

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