Understanding the support needs of family members of people undergoing chemotherapy: a longitudinal qualitative study
Understanding the support needs of family members of people undergoing chemotherapy: a longitudinal qualitative study
Purpose: capture change in family members' experiences as they look after patients during chemotherapy, and understand variability in their needs for support.
Method: longitudinal digitally-recorded qualitative semi-structured interviews with family carers at the beginning, mid-point, and end of treatment. Twenty-five family members (17 women, 8 men), mean age 53, were interviewed. Fifteen participants were supporting a relative having chemotherapy with curative intent, and 10 a patient receiving palliative chemotherapy. They were recruited from two UK locations: a regional cancer centre in Southampton and a comprehensive cancer centre in London. Sixty-three interviews were conducted in total, and the data were analysed using Framework Analysis.
Results: three themes were generated from the data: Changing lives, Changing roles; Confidence in caring, and Managing uncertainty. These captured family carers' evolving needs and sense of confidence in caregiving during chemotherapy. Carers reported considerable anxiety at the outset of treatment which persisted throughout. Anxiety was underpinned by fears of disease recurrence or progression and concerns about treatment outcomes.
Conclusions: this study presents original fine-grained work that captures the changes over time in family carers' experiences of chemotherapy and their adaptation to caregiving. It provides fundamental evidence of the challenges that cancer carers face during patients' treatment; evidence that can be used as a basis for carer assessment and to build much-needed carer interventions. Oncology nurses should assess carers': ability to care; needs for information and support to prepare them for this; wellbeing over time; and, any support they may require to prevent them from becoming overburdened.
Cancer, Chemotherapy, Family carers, Longitudinal, Qualitative, Support needs
Ream, Emma
cac5aaf5-797c-4aff-b86f-ea717ac178fa
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Lucas, Grace
c26bafa2-1ccc-4bf9-bbf4-b43314339a3e
Marcu, Afrodita
25ba37d2-9068-4c58-8527-fb799152add3
Foster, Rebecca
c811528a-908b-4629-a32f-c605855b060f
Fuller, Ginny
f6686b86-04ce-4deb-9441-f3002aba9913
Oakley, Catherine
34288e92-220c-4eaa-9dd2-115020b3e49f
23 November 2020
Ream, Emma
cac5aaf5-797c-4aff-b86f-ea717ac178fa
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Lucas, Grace
c26bafa2-1ccc-4bf9-bbf4-b43314339a3e
Marcu, Afrodita
25ba37d2-9068-4c58-8527-fb799152add3
Foster, Rebecca
c811528a-908b-4629-a32f-c605855b060f
Fuller, Ginny
f6686b86-04ce-4deb-9441-f3002aba9913
Oakley, Catherine
34288e92-220c-4eaa-9dd2-115020b3e49f
Ream, Emma, Richardson, Alison, Lucas, Grace, Marcu, Afrodita, Foster, Rebecca, Fuller, Ginny and Oakley, Catherine
(2020)
Understanding the support needs of family members of people undergoing chemotherapy: a longitudinal qualitative study.
European Journal of Oncology Nursing, 50, [101861].
(doi:10.1016/j.ejon.2020.101861).
Abstract
Purpose: capture change in family members' experiences as they look after patients during chemotherapy, and understand variability in their needs for support.
Method: longitudinal digitally-recorded qualitative semi-structured interviews with family carers at the beginning, mid-point, and end of treatment. Twenty-five family members (17 women, 8 men), mean age 53, were interviewed. Fifteen participants were supporting a relative having chemotherapy with curative intent, and 10 a patient receiving palliative chemotherapy. They were recruited from two UK locations: a regional cancer centre in Southampton and a comprehensive cancer centre in London. Sixty-three interviews were conducted in total, and the data were analysed using Framework Analysis.
Results: three themes were generated from the data: Changing lives, Changing roles; Confidence in caring, and Managing uncertainty. These captured family carers' evolving needs and sense of confidence in caregiving during chemotherapy. Carers reported considerable anxiety at the outset of treatment which persisted throughout. Anxiety was underpinned by fears of disease recurrence or progression and concerns about treatment outcomes.
Conclusions: this study presents original fine-grained work that captures the changes over time in family carers' experiences of chemotherapy and their adaptation to caregiving. It provides fundamental evidence of the challenges that cancer carers face during patients' treatment; evidence that can be used as a basis for carer assessment and to build much-needed carer interventions. Oncology nurses should assess carers': ability to care; needs for information and support to prepare them for this; wellbeing over time; and, any support they may require to prevent them from becoming overburdened.
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More information
Accepted/In Press date: 19 October 2020
e-pub ahead of print date: 11 November 2020
Published date: 23 November 2020
Additional Information:
Funding Information:
This research was made possible through a grant from Macmillan Cancer Support, UK and the generosity of the informal carers who gave their time so their stories and experiences could be captured. We would also like to acknowledge the support of nurses in the day units where this research was conducted and thank them for their much valued assistance with recruitment. Without their support this research would not have been possible.
Keywords:
Cancer, Chemotherapy, Family carers, Longitudinal, Qualitative, Support needs
Identifiers
Local EPrints ID: 485390
URI: http://eprints.soton.ac.uk/id/eprint/485390
ISSN: 1462-3889
PURE UUID: abcd7811-129d-49a4-a94f-6cba46dfeea3
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Date deposited: 05 Dec 2023 17:48
Last modified: 17 Mar 2024 03:19
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Contributors
Author:
Emma Ream
Author:
Grace Lucas
Author:
Afrodita Marcu
Author:
Rebecca Foster
Author:
Ginny Fuller
Author:
Catherine Oakley
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