Hope in the era of precision oncology: a qualitative study of informal caregivers’ experiences
Objectives To explore informal caregivers’ perspectives on precision medicine in cancer care.Design Semi-structured interviews with the informal caregivers of people living with cancer and receiving targeted/immunotherapies. Interview transcripts were analysed thematically using a framework approach...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2023-05-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/13/5/e065753.full |
| _version_ | 1797834768690184192 |
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| author | Alex Broom Zarnie Lwin Mustafa Khasraw Barbara Prainsack Katherine Kenny Leah Williams Veazey Michelle Peterie Alexander Page Claire E. Wakefield Malinda Itchins |
| author_facet | Alex Broom Zarnie Lwin Mustafa Khasraw Barbara Prainsack Katherine Kenny Leah Williams Veazey Michelle Peterie Alexander Page Claire E. Wakefield Malinda Itchins |
| author_sort | Alex Broom |
| collection | DOAJ |
| description | Objectives To explore informal caregivers’ perspectives on precision medicine in cancer care.Design Semi-structured interviews with the informal caregivers of people living with cancer and receiving targeted/immunotherapies. Interview transcripts were analysed thematically using a framework approach.Setting Recruitment was facilitated by two hospitals and five Australian cancer community groups.Participants Informal caregivers (n=28; 16 men, 12 women; aged 18–80) of people living with cancer and receiving targeted/immunotherapies.Results Thematic analysis identified three findings, centred largely on the pervasive theme of hope in relation to precision therapies including: (1) precision as a key component of caregivers’ hope; (2) hope as a collective practice between patients, caregivers, clinicians and others, which entailed work and obligation for caregivers; and (3) hope as linked to expectations of further scientific progress, even if there may be no personal, immediate benefit.Conclusions Innovation and change in precision oncology are rapidly reconfiguring the parameters of hope for patients and caregivers, creating new and difficult relational moments and experiences in everyday life and in clinical encounters. In the context of a shifting therapeutic landscape, caregivers’ experiences illustrate the need to understand hope as collectively produced, as emotional and moral labour, and as entangled in broader cultural expectations of medical advances. Such understandings may help clinicians as they guide patients and caregivers through the complexities of diagnosis, treatment, emerging evidence and possible futures in the precision era. Developing a better understanding of informal caregivers’ experiences of caring for patients receiving precision therapies is important for improving support to patients and their caregivers. |
| first_indexed | 2024-04-09T14:42:48Z |
| format | Article |
| id | doaj.art-cced345cb10f4eeca2b4e668a4d5ddb2 |
| institution | Directory Open Access Journal |
| issn | 2044-6055 |
| language | English |
| last_indexed | 2024-04-09T14:42:48Z |
| publishDate | 2023-05-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj.art-cced345cb10f4eeca2b4e668a4d5ddb22023-05-03T05:00:07ZengBMJ Publishing GroupBMJ Open2044-60552023-05-0113510.1136/bmjopen-2022-065753Hope in the era of precision oncology: a qualitative study of informal caregivers’ experiencesAlex Broom0Zarnie Lwin1Mustafa Khasraw2Barbara Prainsack3Katherine Kenny4Leah Williams Veazey5Michelle Peterie6Alexander Page7Claire E. Wakefield8Malinda Itchins9Faculty of Arts and Social Sciences, University of New South Wales, Sydney, New South Wales, AustraliaMedical Oncology, Royal Brisbane and Women`s Hospital, Herston, Queensland, AustraliaPreston Robert Tisch Brain Tumor Center at Duke, Department of Neurosurgery, Duke University Medical Center, Durham, North Carolina, USA21 Department of Political Science, University of Vienna, Vienna, AustriaSydney Centre for Healthy Societies, School of Social and Political Sciences, University of Sydney, Sydney, New South Wales, AustraliaSydney Centre for Healthy Societies, School of Social and Political Sciences, The University of Sydney, Sydney, New South Wales, AustraliaSydney Centre for Healthy Societies; School of Social and Political Sciences, The University of Sydney, Sydney, New South Wales, AustraliaSydney Centre for Healthy Societies; School of Social and Political Sciences, The University of Sydney, Sydney, New South Wales, AustraliaBehavioural Sciences Unit, Kids Cancer Centre, Sydney Children`s Hospital Randwick, Randwick, New South Wales, AustraliaNorthern Clinical School, The University of Sydney, Sydney, New South Wales, AustraliaObjectives To explore informal caregivers’ perspectives on precision medicine in cancer care.Design Semi-structured interviews with the informal caregivers of people living with cancer and receiving targeted/immunotherapies. Interview transcripts were analysed thematically using a framework approach.Setting Recruitment was facilitated by two hospitals and five Australian cancer community groups.Participants Informal caregivers (n=28; 16 men, 12 women; aged 18–80) of people living with cancer and receiving targeted/immunotherapies.Results Thematic analysis identified three findings, centred largely on the pervasive theme of hope in relation to precision therapies including: (1) precision as a key component of caregivers’ hope; (2) hope as a collective practice between patients, caregivers, clinicians and others, which entailed work and obligation for caregivers; and (3) hope as linked to expectations of further scientific progress, even if there may be no personal, immediate benefit.Conclusions Innovation and change in precision oncology are rapidly reconfiguring the parameters of hope for patients and caregivers, creating new and difficult relational moments and experiences in everyday life and in clinical encounters. In the context of a shifting therapeutic landscape, caregivers’ experiences illustrate the need to understand hope as collectively produced, as emotional and moral labour, and as entangled in broader cultural expectations of medical advances. Such understandings may help clinicians as they guide patients and caregivers through the complexities of diagnosis, treatment, emerging evidence and possible futures in the precision era. Developing a better understanding of informal caregivers’ experiences of caring for patients receiving precision therapies is important for improving support to patients and their caregivers.https://bmjopen.bmj.com/content/13/5/e065753.full |
| spellingShingle | Alex Broom Zarnie Lwin Mustafa Khasraw Barbara Prainsack Katherine Kenny Leah Williams Veazey Michelle Peterie Alexander Page Claire E. Wakefield Malinda Itchins Hope in the era of precision oncology: a qualitative study of informal caregivers’ experiences BMJ Open |
| title | Hope in the era of precision oncology: a qualitative study of informal caregivers’ experiences |
| title_full | Hope in the era of precision oncology: a qualitative study of informal caregivers’ experiences |
| title_fullStr | Hope in the era of precision oncology: a qualitative study of informal caregivers’ experiences |
| title_full_unstemmed | Hope in the era of precision oncology: a qualitative study of informal caregivers’ experiences |
| title_short | Hope in the era of precision oncology: a qualitative study of informal caregivers’ experiences |
| title_sort | hope in the era of precision oncology a qualitative study of informal caregivers experiences |
| url | https://bmjopen.bmj.com/content/13/5/e065753.full |
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