A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: perspectives of patients and health care professionals

Marco D. Boonstra; Sijmen A. Reijneveld; Ralf Westerhuis; Janne M. Tullius; Johanna P.M. Vervoort; Gerjan Navis; Andrea F. de Winter

doi:10.1016/j.pec.2021.05.016

A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: perspectives of patients and health care professionals

Marco D. Boonstra^*, Sijmen A. Reijneveld, Ralf Westerhuis, Janne M. Tullius, Johanna P.M. Vervoort, Gerjan Navis, Andrea F. de Winter

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

11 Citations (Scopus)

336 Downloads (Pure)

Abstract

Objectives
Limited Health literacy (LHL) is associated with faster kidney deterioration. Health care professionals (HCPs) promote self-management to maintain kidney function, which is difficult for patients with LHL. Evidence lacks on perceived barriers and best strategies to optimize their self-management. Our study aims to explore experiences with and barriers for self-management from the perspectives of LHL patients and HCPs to identify strategies to optimize self-management.

Methods
We performed a longitudinal qualitative study with semi-structured in-depth interviews and focus group discussions among CKD patients and LHL (n=24) and HCPs (n=37) from general practices and hospitals.

Results
Four themes arose among patients: 1) CKD elusiveness, 2) suboptimal intake of knowledge 3) not taking a front-seat role, and 4) maintaining change. Among HCPs, three themes emerged: 1) not recognizing HL problems, 2) lacking effective strategies, and 3) health care barriers.

Conclusion
We suggest three routes to optimize self-management: providing earlier information, applying person-centred strategies to maintain changes, and improving competencies of HCPs.

Practice implications
HCPs need to explain CKD self-management better to prevent kidney deterioration. New interventions, based on behavioural approaches, are needed to optimize self-management. HCPs need training to improve recognition and support of LHL patients.

Original language	English
Pages (from-to)	88-104
Journal	Patient Education and Counseling
Volume	105
Issue number	1
Early online date	May-2021
DOIs	https://doi.org/10.1016/j.pec.2021.05.016
Publication status	Published - Jan-2022

Keywords

health literacy
Communication
patient education
health promotion
longitudinal research
patient-centered

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Boonstra, M. D., Reijneveld, S. A., Westerhuis, R., Tullius, J. M., Vervoort, J. P. M., Navis, G., & Winter, A. F. D. (2022). A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: perspectives of patients and health care professionals. Patient Education and Counseling, 105(1), 88-104. https://doi.org/10.1016/j.pec.2021.05.016

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title = "A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: perspectives of patients and health care professionals",

abstract = "ObjectivesLimited Health literacy (LHL) is associated with faster kidney deterioration. Health care professionals (HCPs) promote self-management to maintain kidney function, which is difficult for patients with LHL. Evidence lacks on perceived barriers and best strategies to optimize their self-management. Our study aims to explore experiences with and barriers for self-management from the perspectives of LHL patients and HCPs to identify strategies to optimize self-management.MethodsWe performed a longitudinal qualitative study with semi-structured in-depth interviews and focus group discussions among CKD patients and LHL (n=24) and HCPs (n=37) from general practices and hospitals.ResultsFour themes arose among patients: 1) CKD elusiveness, 2) suboptimal intake of knowledge 3) not taking a front-seat role, and 4) maintaining change. Among HCPs, three themes emerged: 1) not recognizing HL problems, 2) lacking effective strategies, and 3) health care barriers.ConclusionWe suggest three routes to optimize self-management: providing earlier information, applying person-centred strategies to maintain changes, and improving competencies of HCPs.Practice implicationsHCPs need to explain CKD self-management better to prevent kidney deterioration. New interventions, based on behavioural approaches, are needed to optimize self-management. HCPs need training to improve recognition and support of LHL patients.",

keywords = "health literacy, Communication, patient education, health promotion, longitudinal research, patient-centered",

author = "Boonstra, {Marco D.} and Reijneveld, {Sijmen A.} and Ralf Westerhuis and Tullius, {Janne M.} and Vervoort, {Johanna P.M.} and Gerjan Navis and Winter, {Andrea F. de}",

note = "Funding Information: The Dutch Kidney Foundation funded this project under grant number 17SWO06 . Funding came from the Social and Behavioural Sciences Call. It covers the research team and future development of interventions. Publisher Copyright: {\textcopyright} 2021 The Authors",

year = "2022",

month = jan,

doi = "10.1016/j.pec.2021.05.016",

language = "English",

volume = "105",

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Boonstra, MD , Reijneveld, SA , Westerhuis, R , Tullius, JM, Vervoort, JPM, Navis, G & Winter, AFD 2022, 'A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: perspectives of patients and health care professionals', Patient Education and Counseling, vol. 105, no. 1, pp. 88-104. https://doi.org/10.1016/j.pec.2021.05.016

A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: perspectives of patients and health care professionals. / Boonstra, Marco D.; Reijneveld, Sijmen A.; Westerhuis, Ralf et al.
In: Patient Education and Counseling, Vol. 105, No. 1, 01.2022, p. 88-104.

Research output: Contribution to journal › Article › Academic › peer-review

TY - JOUR

T1 - A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy

T2 - perspectives of patients and health care professionals

AU - Boonstra, Marco D.

AU - Reijneveld, Sijmen A.

AU - Westerhuis, Ralf

AU - Tullius, Janne M.

AU - Vervoort, Johanna P.M.

AU - Navis, Gerjan

AU - Winter, Andrea F. de

N1 - Funding Information: The Dutch Kidney Foundation funded this project under grant number 17SWO06 . Funding came from the Social and Behavioural Sciences Call. It covers the research team and future development of interventions. Publisher Copyright: © 2021 The Authors

PY - 2022/1

Y1 - 2022/1

N2 - ObjectivesLimited Health literacy (LHL) is associated with faster kidney deterioration. Health care professionals (HCPs) promote self-management to maintain kidney function, which is difficult for patients with LHL. Evidence lacks on perceived barriers and best strategies to optimize their self-management. Our study aims to explore experiences with and barriers for self-management from the perspectives of LHL patients and HCPs to identify strategies to optimize self-management.MethodsWe performed a longitudinal qualitative study with semi-structured in-depth interviews and focus group discussions among CKD patients and LHL (n=24) and HCPs (n=37) from general practices and hospitals.ResultsFour themes arose among patients: 1) CKD elusiveness, 2) suboptimal intake of knowledge 3) not taking a front-seat role, and 4) maintaining change. Among HCPs, three themes emerged: 1) not recognizing HL problems, 2) lacking effective strategies, and 3) health care barriers.ConclusionWe suggest three routes to optimize self-management: providing earlier information, applying person-centred strategies to maintain changes, and improving competencies of HCPs.Practice implicationsHCPs need to explain CKD self-management better to prevent kidney deterioration. New interventions, based on behavioural approaches, are needed to optimize self-management. HCPs need training to improve recognition and support of LHL patients.

AB - ObjectivesLimited Health literacy (LHL) is associated with faster kidney deterioration. Health care professionals (HCPs) promote self-management to maintain kidney function, which is difficult for patients with LHL. Evidence lacks on perceived barriers and best strategies to optimize their self-management. Our study aims to explore experiences with and barriers for self-management from the perspectives of LHL patients and HCPs to identify strategies to optimize self-management.MethodsWe performed a longitudinal qualitative study with semi-structured in-depth interviews and focus group discussions among CKD patients and LHL (n=24) and HCPs (n=37) from general practices and hospitals.ResultsFour themes arose among patients: 1) CKD elusiveness, 2) suboptimal intake of knowledge 3) not taking a front-seat role, and 4) maintaining change. Among HCPs, three themes emerged: 1) not recognizing HL problems, 2) lacking effective strategies, and 3) health care barriers.ConclusionWe suggest three routes to optimize self-management: providing earlier information, applying person-centred strategies to maintain changes, and improving competencies of HCPs.Practice implicationsHCPs need to explain CKD self-management better to prevent kidney deterioration. New interventions, based on behavioural approaches, are needed to optimize self-management. HCPs need training to improve recognition and support of LHL patients.

KW - health literacy

KW - Communication

KW - patient education

KW - health promotion

KW - longitudinal research

KW - patient-centered

U2 - 10.1016/j.pec.2021.05.016

DO - 10.1016/j.pec.2021.05.016

M3 - Article

SN - 0738-3991

VL - 105

SP - 88

EP - 104

JO - Patient Education and Counseling

JF - Patient Education and Counseling

IS - 1

ER -

Boonstra MD , Reijneveld SA , Westerhuis R , Tullius JM, Vervoort JPM, Navis G et al. A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: perspectives of patients and health care professionals. Patient Education and Counseling. 2022 Jan;105(1):88-104. Epub 2021 May. doi: 10.1016/j.pec.2021.05.016