Decisional needs in people with kidney failure, their relatives and health professionals about end-of-life care options: A qualitative interview study

Louise Engelbrecht Buur; Hilary Louise Bekker; Lotte Ørneborg Rodkjær; Anne Kvist; Julie Borg Kristensen; Henning Søndergaard; Michell Kannegaard; Jens Kristian Madsen; Dinah Sherzad Khatir; Jeanette Finderup

doi:10.1111/jan.16037

Decisional needs in people with kidney failure, their relatives and health professionals about end-of-life care options: A qualitative interview study

Louise Engelbrecht Buur^*, Hilary Louise Bekker, Lotte Ørneborg Rodkjær, Anne Kvist, Julie Borg Kristensen, Henning Søndergaard, Michell Kannegaard, Jens Kristian Madsen, Dinah Sherzad Khatir, Jeanette Finderup

^*Corresponding author for this work

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaper › Journal article › Research › peer-review

3 Citations (Scopus)

Abstract

Aim: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end-of-life care. Design: A qualitative interview study. Methods: Individual semi-structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. Results: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. Conclusion: People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end-of-life care. To meet these various needs, end-of-life conversations should be systematic and organized according to the patients' needs and wishes. Impact: Non-systematic end-of-life care decision-making processes limit patients' involvement. Patients and relatives need more knowledge about end-of-life care, and health professionals need more competences and time to discuss decisional needs. A shared decision-making intervention for people with kidney failure when making end-of-life care decisions will be developed. Reporting Method: This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Patient or Public Contribution: Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript.

Original language	English
Journal	Journal of Advanced Nursing
Volume	80
Issue	8
Pages (from-to)	3345-3358
Number of pages	14
ISSN	0309-2402
DOIs	https://doi.org/10.1111/jan.16037
Publication status	Published - Aug 2024

Keywords

complex interventions
decisional needs
end-of-life care
involvement
kidney care
kidney disease
shared decision making

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10.1111/jan.16037

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Buur, L. E., Bekker, H. L., Rodkjær, L. Ø., Kvist, A., Kristensen, J. B., Søndergaard, H., Kannegaard, M., Madsen, J. K., Khatir, D. S., & Finderup, J. (2024). Decisional needs in people with kidney failure, their relatives and health professionals about end-of-life care options: A qualitative interview study. Journal of Advanced Nursing, 80(8), 3345-3358. https://doi.org/10.1111/jan.16037

@article{cfc6a86e65614aa89a7f4b79b162b5e2,

title = "Decisional needs in people with kidney failure, their relatives and health professionals about end-of-life care options: A qualitative interview study",

abstract = "Aim: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end-of-life care. Design: A qualitative interview study. Methods: Individual semi-structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. Results: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. Conclusion: People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end-of-life care. To meet these various needs, end-of-life conversations should be systematic and organized according to the patients' needs and wishes. Impact: Non-systematic end-of-life care decision-making processes limit patients' involvement. Patients and relatives need more knowledge about end-of-life care, and health professionals need more competences and time to discuss decisional needs. A shared decision-making intervention for people with kidney failure when making end-of-life care decisions will be developed. Reporting Method: This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Patient or Public Contribution: Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript.",

keywords = "complex interventions, decisional needs, end-of-life care, involvement, kidney care, kidney disease, shared decision making",

author = "Buur, {Louise Engelbrecht} and Bekker, {Hilary Louise} and Rodkj{\ae}r, {Lotte {\O}rneborg} and Anne Kvist and Kristensen, {Julie Borg} and Henning S{\o}ndergaard and Michell Kannegaard and Madsen, {Jens Kristian} and Khatir, {Dinah Sherzad} and Jeanette Finderup",

year = "2024",

month = aug,

doi = "10.1111/jan.16037",

language = "English",

volume = "80",

pages = "3345--3358",

journal = "Journal of Advanced Nursing",

issn = "0309-2402",

publisher = "Wiley-Blackwell Publishing Ltd",

number = "8",

}

Buur, LE, Bekker, HL, Rodkjær, LØ, Kvist, A, Kristensen, JB, Søndergaard, H, Kannegaard, M, Madsen, JK, Khatir, DS & Finderup, J 2024, 'Decisional needs in people with kidney failure, their relatives and health professionals about end-of-life care options: A qualitative interview study', Journal of Advanced Nursing, vol. 80, no. 8, pp. 3345-3358. https://doi.org/10.1111/jan.16037

Decisional needs in people with kidney failure, their relatives and health professionals about end-of-life care options: A qualitative interview study. / Buur, Louise Engelbrecht; Bekker, Hilary Louise; Rodkjær, Lotte Ørneborg et al.
In: Journal of Advanced Nursing, Vol. 80, No. 8, 08.2024, p. 3345-3358.

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaper › Journal article › Research › peer-review

TY - JOUR

T1 - Decisional needs in people with kidney failure, their relatives and health professionals about end-of-life care options

T2 - A qualitative interview study

AU - Buur, Louise Engelbrecht

AU - Bekker, Hilary Louise

AU - Rodkjær, Lotte Ørneborg

AU - Kvist, Anne

AU - Kristensen, Julie Borg

AU - Søndergaard, Henning

AU - Kannegaard, Michell

AU - Madsen, Jens Kristian

AU - Khatir, Dinah Sherzad

AU - Finderup, Jeanette

PY - 2024/8

Y1 - 2024/8

N2 - Aim: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end-of-life care. Design: A qualitative interview study. Methods: Individual semi-structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. Results: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. Conclusion: People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end-of-life care. To meet these various needs, end-of-life conversations should be systematic and organized according to the patients' needs and wishes. Impact: Non-systematic end-of-life care decision-making processes limit patients' involvement. Patients and relatives need more knowledge about end-of-life care, and health professionals need more competences and time to discuss decisional needs. A shared decision-making intervention for people with kidney failure when making end-of-life care decisions will be developed. Reporting Method: This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Patient or Public Contribution: Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript.

AB - Aim: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end-of-life care. Design: A qualitative interview study. Methods: Individual semi-structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. Results: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. Conclusion: People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end-of-life care. To meet these various needs, end-of-life conversations should be systematic and organized according to the patients' needs and wishes. Impact: Non-systematic end-of-life care decision-making processes limit patients' involvement. Patients and relatives need more knowledge about end-of-life care, and health professionals need more competences and time to discuss decisional needs. A shared decision-making intervention for people with kidney failure when making end-of-life care decisions will be developed. Reporting Method: This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Patient or Public Contribution: Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript.

KW - complex interventions

KW - decisional needs

KW - end-of-life care

KW - involvement

KW - kidney care

KW - kidney disease

KW - shared decision making

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U2 - 10.1111/jan.16037

DO - 10.1111/jan.16037

M3 - Journal article

C2 - 38186058

AN - SCOPUS:85181503984

SN - 0309-2402

VL - 80

SP - 3345

EP - 3358

JO - Journal of Advanced Nursing

JF - Journal of Advanced Nursing

IS - 8

ER -

Decisional needs in people with kidney failure, their relatives and health professionals about end-of-life care options: A qualitative interview study

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