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

Lambert, Kelly; Mansfield, Kylie J; Mullan, Judy

doi:10.1111/jorc.12260

Cited by 32 publications

(60 citation statements)

References 75 publications

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“…Category 1 (not always visible, can be conducted alone, and consumed resources) and category 2 (not always visible, can be conducted alone, and purposefully created resources) relate to cognitive workflow [ 101 ] and fit into emotional management within the Corbin and Strauss’s model. Within the cognitive workflow, which consists of sensemaking [ 102 , 103 ], planning, monitoring, decision making [ 9 ], and coordinating, the person makes the cognitive preparations necessary before conducting an action. This was reflected in activities such as planning and adjusting routines to make space for health-related work.…”

Section: Discussionmentioning

confidence: 99%

Patient Work and Their Contexts: Scoping Review

et al. 2020

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Background Having patients self-manage their health conditions is a widely promoted concept, but many patients struggle to practice it effectively. Moreover, few studies have analyzed the nature of work required from patients and how such work fits into the context of their daily life. Objective This study aimed to review the characteristics of patient work in adult patients. Patient work refers to tasks that health conditions impose on patients (eg, taking medications) within a system of contextual factors. Methods A systematic scoping review was conducted using narrative synthesis. Data were extracted from PubMed, Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), and PsycINFO, including studies from August 2013 to August 2018. The included studies focused on adult patients and assessed one or more of the following: (1) physical health–related tasks, (2) cognitive health–related tasks, or (3) contextual factors affecting these tasks. Tasks were categorized according to the themes that emerged: (1) if the task is always visible to others or can be cognitive, (2) if the task must be conducted collaboratively or can be conducted alone, and (3) if the task was done with the purpose of creating resources. Contextual factors were grouped according to the level at which they exert influence (micro, meso, or macro) and where they fit in the patient work system (the macroergonomic layer of physical, social, and organizational factors; the mesoergonomic layer of household and community; and the microergonomic triad of person-task-tools). Results In total, 67 publications were included, with 58 original research articles and 9 review articles. A variety of patient work tasks were observed, ranging from physical and tangible tasks (such as taking medications and visiting health care professionals) to psychological and social tasks (such as creating coping strategies). Patient work was affected by a range of contextual factors on the micro, meso, or macro levels. Our results indicate that most patient work was done alone, in private, and often imposing cognitive burden with low amounts of support. Conclusions This review sought to provide insight into the work burden of health management from a patient perspective and how patient context influences such work. For many patients, health-related work is ever present, invisible, and overwhelming. When researchers and clinicians design and implement patient-facing interventions, it is important to understand how the extra work impacts one’s internal state and coping strategy, how such work fits into daily routines, and if these changes could be maintained in the long term.

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Section: Discussionmentioning

confidence: 99%

Patient Work and Their Contexts: Scoping Review

et al. 2020

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“…For optimal control of P absorption, regular careful review of the use and administration of P binders is essential. Children and their caregivers benefit from regular diet education sessions [103,104], with help from renal dietitians, as well as doctors and nurses, to understand the complexities of their renal diet [102,105,106].…”

Section: Evidence and Rationalementioning

confidence: 99%

The dietary management of calcium and phosphate in children with CKD stages 2-5 and on dialysis—clinical practice recommendation from the Pediatric Renal Nutrition Taskforce

et al. 2019

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In children with chronic kidney disease (CKD), optimal control of bone and mineral homeostasis is essential, not only for the prevention of debilitating skeletal complications and achieving adequate growth but also for preventing vascular calcification and cardiovascular disease. Complications of mineral bone disease (MBD) are common and contribute to the high morbidity and mortality seen in children with CKD. Although several studies describe the prevalence of abnormal calcium, phosphate, parathyroid hormone, and vitamin D levels as well as associated clinical and radiological complications and their medical management, little is known about the dietary requirements and management of calcium (Ca) and phosphate (P) in children with CKD. The Pediatric Renal Nutrition Taskforce (PRNT) is an international team of pediatric renal dietitians and pediatric nephrologists, who develop clinical practice recommendations (CPRs) for the nutritional management of various aspects of renal disease management in children. We present CPRs for the dietary intake of Ca and P in children with CKD stages 2-5 and on dialysis (CKD2-5D), describing the common Ca-and P-containing foods, the assessment of dietary Ca and P intake, requirements for Ca and P in healthy children and necessary modifications for children with CKD2-5D, and dietary management of hypo-and hypercalcemia and hyperphosphatemia. The statements have been graded, and statements with a low grade or those that are opinion-based must be carefully considered and adapted to individual patient needs based on the clinical judgment of the treating physician and dietitian. These CPRs will be regularly audited and updated by the PRNT.

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“…This can prevent consumers becoming confused with online material. 10 Work on developing PEMs in our own health district includes:…”

Section: St Centurymentioning

confidence: 99%