Patient participation in dialysis care—A qualitative study of patients’ and health professionals’ perspectives

Årestedt, Liselott; Martinsson, Caroline; Hjelm, Carina; Uhlin, Fredrik; Eldh, Ann Catrine

doi:10.1111/hex.12966

Cited by 24 publications

(74 citation statements)

References 36 publications

(48 reference statements)

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“…In the current study, nephrologists considered self-care activities equal to patient participation, seeing self-care as a source of patient empowerment. This is in line with a Swedish study [ 33 ] which found that healthcare professionals viewed the performance of dialysis as the ultimate form of patient participation in ESRD care. Patients, however, considered the choice of having the staff run their dialysis, at certain times or continuously, as an act of participation [ 33 ].…”

Section: Discussionsupporting

confidence: 90%

“…This is in line with a Swedish study [ 33 ] which found that healthcare professionals viewed the performance of dialysis as the ultimate form of patient participation in ESRD care. Patients, however, considered the choice of having the staff run their dialysis, at certain times or continuously, as an act of participation [ 33 ]. This is in accordance with a broader understanding of patient participation that includes dialogue, involvement in care, mutual shared knowledge and the management of self-care [ 34 ].…”

Section: Discussionsupporting

confidence: 90%

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Nephrologists’ experiences with patient participation when long-term dialysis is required

et al. 2021

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Background For individuals in need of dialysis, patient participation is important when determining care goals and in decision making regarding dialysis modality. Nephrologists hold a key role in delivering evidence-based healthcare that integrates patient preferences and values throughout the trajectory, and their experiences with patient participation are important for improving health care. The aim of this study was to explore nephrologists’ experiences with patient participation in different phases of the end-stage renal disease trajectory for working-age individuals who require dialysis. Methods This explorative study comprised interviews with ten nephrologists from four different dialysis units in Central Norway. We analysed the interviews by applying an interpretive phenomenological approach. Results Nephrologists had varied experiences with patient participation throughout the different phases of the treatment trajectory. During decision making on the dialysis modality, nephrologists emphasised patients’ choices in two approaches. In the first approach, they expected patients to choose the modality based on the provided information, which could be actively steered. In the second approach, they recognised the patients’ values and lifestyle preferences through shared decision-making. Within hospital haemodialysis, nephrologists considered patients’ self-care activities equivalent to patient participation, seeing self-care as a source of patient empowerment. They identified divergent patient–professional values and organisational structures as barriers to patient participation. Conclusion Our study shows that nephrologists have different approaches to patient participation in different phases of the end-stage renal disease trajectory. Individual understanding as well as organisational structures are important factors to address to increase patient participation in end-stage renal disease care. Shared decision making, in which patient values are balanced against biomedical treatment targets, allows for mutual agreement between patients and healthcare professionals concerning medical plans and minimises the potential for patient–professional tensions.

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Section: Discussionsupporting

confidence: 90%

Section: Discussionsupporting

confidence: 90%

Nephrologists’ experiences with patient participation when long-term dialysis is required

et al. 2021

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“…The principles descend from both previous studies on patient participation [6,7,[11][12][13][14][15][16][17]21] and healthcare norms, literally transpiring through F. Nightingale's momentum to provide healthcare services of high quality yet in accordance with the desires of the patient [22], to today's mutual engagement of the patient and the healthcare professionals on the patient's team by means of for example person-centred care [23].…”

Section: Development Of a Match-rank For Preference-based Patient Parmentioning

confidence: 99%

“…Healthcare professionals often recount patient participation as related mainly to being engaged in decision-making [5], while patients depict it in a broader sense, including sharing experiences and information, shared decision-making, and self-management [6]. Furthermore, patients' priorities for participation have been found to vary: the way in which and to what extent one prefers to partake can alter with, for example, type of healthcare contact and the reason for it [6,7].…”

Section: Introductionmentioning

confidence: 99%

Assessing and reporting patient participation by means of patient preferences and experiences

Eldh

Holmefur

Luhr

et al. 2020

BMC Health Serv Res

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Background: Although patient participation is strongly associated with high quality of healthcare, valid means to measure and report a comprehensive notion of patient participation are scarce. The Patient Preferences for Patient Participation (4Ps) is a new healthcare practice and research tool, comprising patients' preferences as well as experiences. The 4Ps employs 12 items for the patient to conceptualise patient participation. The aim of this paper is to describe how the two perspectives of patient participation, namely preferences and experiences, can be combined to visualise and report preference-based patient participation. Methods: With four response alternatives in each section, the 4Ps offers sixteen possible combinations of degree of match per item. Theoretical and clinical principles fostered a tentative order of six ranks and three levels of preference-based patient participation. To test the standard, statistical analyses for ordinal data were performed, using data from a randomised controlled trial evaluating an intervention aiming to improve patient participation. Further, structures for visualising the preference-based patient participation of individuals and groups were suggested. Results: Data from the 4Ps demonstrated the individuals' preference-based patient participation, indicating either a match or a mismatch for each item. Mismatches represented either the experience of participation surpassing the patient's preferences, or the patient's preferences for patient participation not being established. At group level, the suggested approach for visualising and reporting the 4Ps demonstrated that the intervention group had a significantly higher proportion of sufficient preference-based patient participation for certain items than the control group. These results had not been identified earlier, when using the preferences and experiences of patient participation as separate measures.

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“…In particular, for people with a long‐term illness, it is important to better understand how repeated and prolonged contact with the healthcare sector can foster conditions beneficial for patient participation. Living with end‐stage renal disease (ESRD) requires that the individual engages around the clock, for example, in repeated healthcare interactions and everyday adaptions (Årestedt, Martinsson, Hjelm, Uhlin, & Eldh, 2019). Current data suggest that about 10,000 individuals are treated for ESRD in Sweden, and 4,000 of those are patients in hemo‐ or peritoneal dialysis (Swedish Renal Registry, 2018).…”

Section: Introductionmentioning

confidence: 99%

Context Factors Facilitating and Hindering Patient Participation in Dialysis Care: A Focus Group Study With Patients and Staff

Årestedt

Martinsson

Hjelm

et al. 2020

Worldviews Ev Based Nurs

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Background: Safe health care of good quality depends on structured and unceasing efforts to progress, promoting strategies tailored to the context, including elements such as patients' preferences. Although patient participation is a common concept in health care, there is yet limited understanding of the factors that facilitate and hinder it in a healthcare context. Aims: This paper identifies what patients and health professionals depict in terms of enablers and barriers for patient participation in dialysis care. Methods: An explorative qualitative design was applied with seven focus group discussions with patients, staff, and managers across different types of hospitals, with the texts analyzed with content analysis. Results: The dialysis context represents three key elements-people, resources, and interactions-that can both enable and hinder patient participation. Both barriers and facilitators for patient participation were found to reside at individual, team, and organizational levels, with a greater number of enabling factors implied by both patients and staff.

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Patient participation in dialysis care—A qualitative study of patients’ and health professionals’ perspectives

Cited by 24 publications

References 36 publications

Nephrologists’ experiences with patient participation when long-term dialysis is required

Nephrologists’ experiences with patient participation when long-term dialysis is required

Assessing and reporting patient participation by means of patient preferences and experiences

Context Factors Facilitating and Hindering Patient Participation in Dialysis Care: A Focus Group Study With Patients and Staff

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