Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN): A qualitative study

Research output: Contribution to journalJournal articleResearchpeer-review

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Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN) : A qualitative study. / Rossau, Henriette Knold; Kjerholt, Mette; Brochmann, Nana; Tang, Lars Hermann; Dieperink, Karin Brochstedt.

In: Journal of Clinical Nursing, Vol. 31, No. 7-8, 2022, p. 909-921.

Research output: Contribution to journalJournal articleResearchpeer-review

Harvard

Rossau, HK, Kjerholt, M, Brochmann, N, Tang, LH & Dieperink, KB 2022, 'Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN): A qualitative study', Journal of Clinical Nursing, vol. 31, no. 7-8, pp. 909-921. https://doi.org/10.1111/jocn.15944

APA

Rossau, H. K., Kjerholt, M., Brochmann, N., Tang, L. H., & Dieperink, K. B. (2022). Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN): A qualitative study. Journal of Clinical Nursing, 31(7-8), 909-921. https://doi.org/10.1111/jocn.15944

Vancouver

Rossau HK, Kjerholt M, Brochmann N, Tang LH, Dieperink KB. Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN): A qualitative study. Journal of Clinical Nursing. 2022;31(7-8):909-921. https://doi.org/10.1111/jocn.15944

Author

Rossau, Henriette Knold ; Kjerholt, Mette ; Brochmann, Nana ; Tang, Lars Hermann ; Dieperink, Karin Brochstedt. / Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN) : A qualitative study. In: Journal of Clinical Nursing. 2022 ; Vol. 31, No. 7-8. pp. 909-921.

Bibtex

@article{4c4eb7e2a24344b9905b4315bcab1dde,
title = "Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN): A qualitative study",
abstract = "Aims and Objectives: To explore experiences of daily living and identify rehabilitation needs in patients and caregivers living with myeloproliferative neoplasms. Background: Myeloproliferative neoplasms are chronic haematological cancers. Studies report a high symptom burden but little is known about supportive care and rehabilitation for this patient group. Design: Qualitative study with a phenomenological approach using focus group interviews to gather knowledge about the participants' lived experiences. Methods: Forty-eight patients and seven caregivers attending a 5-day rehabilitation course were interviewed in 12 focus groups. Systematic Text Condensation was used to analyse the interviews. Reporting adhered to COREQ. Results: Two main themes for patients were found: The loss of choice and identity due to the need to prioritise energy and The schism of being a person but also a patient. Patients described how living with myeloproliferative neoplasms meant having to prioritise energy and, therefore, losing freedom to choose activities. This changed their identity and impaired their quality of life. Patients of working age seemed to struggle the most in balancing the disease, family, social relationships and work. One main theme was found for caregivers: Influence of the disease. Caregivers reported how the disease limited their social lives, that the disease brought psychological strain, extra work, and that communication between couples was impaired. When both patients and caregivers participated in rehabilitation courses, they reported better understanding between couples and more open conversations. Rehabilitation needs identified were mainly in relation to psychosocial support and patient education, although needs varied across patients and caregivers. Conclusions: Patients and caregivers expressed difficulties in adjusting to the lives the disease enforced upon them. Our findings indicate that myeloproliferative neoplasms patients and their caregivers would benefit from a combined model of psychosocial support, patient education, peer support and rehabilitation interventions based on an individual needs assessment. Relevance to clinical practice: Nurses can be responsible for individual needs assessments and refer patients and caregivers to suitable supportive care and rehabilitation interventions. Trial registration details: The study was approved by the Danish Data Protection agency (J.nr. 2008-58-0035).",
keywords = "daily living, fatigue, myeloproliferative neoplasms, psychosocial support, quality of life, rehabilitation, supportive care, symptom burden",
author = "Rossau, {Henriette Knold} and Mette Kjerholt and Nana Brochmann and Tang, {Lars Hermann} and Dieperink, {Karin Brochstedt}",
note = "Publisher Copyright: {\textcopyright} 2021 John Wiley & Sons Ltd",
year = "2022",
doi = "10.1111/jocn.15944",
language = "English",
volume = "31",
pages = "909--921",
journal = "Journal of Clinical Nursing",
issn = "0962-1067",
publisher = "Wiley-Blackwell",
number = "7-8",

}

RIS

TY - JOUR

T1 - Daily living and rehabilitation needs in patients and caregivers affected by myeloproliferative neoplasms (MPN)

T2 - A qualitative study

AU - Rossau, Henriette Knold

AU - Kjerholt, Mette

AU - Brochmann, Nana

AU - Tang, Lars Hermann

AU - Dieperink, Karin Brochstedt

N1 - Publisher Copyright: © 2021 John Wiley & Sons Ltd

PY - 2022

Y1 - 2022

N2 - Aims and Objectives: To explore experiences of daily living and identify rehabilitation needs in patients and caregivers living with myeloproliferative neoplasms. Background: Myeloproliferative neoplasms are chronic haematological cancers. Studies report a high symptom burden but little is known about supportive care and rehabilitation for this patient group. Design: Qualitative study with a phenomenological approach using focus group interviews to gather knowledge about the participants' lived experiences. Methods: Forty-eight patients and seven caregivers attending a 5-day rehabilitation course were interviewed in 12 focus groups. Systematic Text Condensation was used to analyse the interviews. Reporting adhered to COREQ. Results: Two main themes for patients were found: The loss of choice and identity due to the need to prioritise energy and The schism of being a person but also a patient. Patients described how living with myeloproliferative neoplasms meant having to prioritise energy and, therefore, losing freedom to choose activities. This changed their identity and impaired their quality of life. Patients of working age seemed to struggle the most in balancing the disease, family, social relationships and work. One main theme was found for caregivers: Influence of the disease. Caregivers reported how the disease limited their social lives, that the disease brought psychological strain, extra work, and that communication between couples was impaired. When both patients and caregivers participated in rehabilitation courses, they reported better understanding between couples and more open conversations. Rehabilitation needs identified were mainly in relation to psychosocial support and patient education, although needs varied across patients and caregivers. Conclusions: Patients and caregivers expressed difficulties in adjusting to the lives the disease enforced upon them. Our findings indicate that myeloproliferative neoplasms patients and their caregivers would benefit from a combined model of psychosocial support, patient education, peer support and rehabilitation interventions based on an individual needs assessment. Relevance to clinical practice: Nurses can be responsible for individual needs assessments and refer patients and caregivers to suitable supportive care and rehabilitation interventions. Trial registration details: The study was approved by the Danish Data Protection agency (J.nr. 2008-58-0035).

AB - Aims and Objectives: To explore experiences of daily living and identify rehabilitation needs in patients and caregivers living with myeloproliferative neoplasms. Background: Myeloproliferative neoplasms are chronic haematological cancers. Studies report a high symptom burden but little is known about supportive care and rehabilitation for this patient group. Design: Qualitative study with a phenomenological approach using focus group interviews to gather knowledge about the participants' lived experiences. Methods: Forty-eight patients and seven caregivers attending a 5-day rehabilitation course were interviewed in 12 focus groups. Systematic Text Condensation was used to analyse the interviews. Reporting adhered to COREQ. Results: Two main themes for patients were found: The loss of choice and identity due to the need to prioritise energy and The schism of being a person but also a patient. Patients described how living with myeloproliferative neoplasms meant having to prioritise energy and, therefore, losing freedom to choose activities. This changed their identity and impaired their quality of life. Patients of working age seemed to struggle the most in balancing the disease, family, social relationships and work. One main theme was found for caregivers: Influence of the disease. Caregivers reported how the disease limited their social lives, that the disease brought psychological strain, extra work, and that communication between couples was impaired. When both patients and caregivers participated in rehabilitation courses, they reported better understanding between couples and more open conversations. Rehabilitation needs identified were mainly in relation to psychosocial support and patient education, although needs varied across patients and caregivers. Conclusions: Patients and caregivers expressed difficulties in adjusting to the lives the disease enforced upon them. Our findings indicate that myeloproliferative neoplasms patients and their caregivers would benefit from a combined model of psychosocial support, patient education, peer support and rehabilitation interventions based on an individual needs assessment. Relevance to clinical practice: Nurses can be responsible for individual needs assessments and refer patients and caregivers to suitable supportive care and rehabilitation interventions. Trial registration details: The study was approved by the Danish Data Protection agency (J.nr. 2008-58-0035).

KW - daily living

KW - fatigue

KW - myeloproliferative neoplasms

KW - psychosocial support

KW - quality of life

KW - rehabilitation

KW - supportive care

KW - symptom burden

U2 - 10.1111/jocn.15944

DO - 10.1111/jocn.15944

M3 - Journal article

C2 - 34231273

AN - SCOPUS:85109134904

VL - 31

SP - 909

EP - 921

JO - Journal of Clinical Nursing

JF - Journal of Clinical Nursing

SN - 0962-1067

IS - 7-8

ER -

ID: 291124634