Abstract
Purpose
The needs of head and neck cancer (HNC) carers tends to be poorly addressed as most support systems are directed towards patients. This systematic review synthesises the existing qualitative evidence from carers for adult HNC patients to explore their experiences and needs as a basis to inform the initial development of an item prompt list for HNC carers for use in routine clinical practice.
Methods
Seven electronic databases were searched from their inception until November 2022, supplemented by citation chaining and snowballing. Primary qualitative or mixed-methods studies reporting the experiences of carers for HNC patients, elicited using interviews, were included. Screening and selection, data extraction and quality assessment (Critical Appraisal Skills Programme Checklist) were independently conducted by two researchers. Data were analysed using inductive thematic synthesis and confidence evaluated using GRADE CERQual.
Results
Thirty studies met the inclusion criteria. Two overarching themes and nine subthemes emerged: (i) the experiences of loss associated with being a carer (loss of: role and everyday routine, certainty leading to emotional distress, security as fear of recurrence prevailed, finances, intimacy and togetherness, enjoyment from social activities); and (ii) factors promoting coping and adjustment to role of carer (information, supportive mechanisms, personal attributes).
Conclusion
New insight into the experiences of HNC carers provides the basis for item generation of a HNC carer prompt tool.
Implications for Cancer Survivors
With such a range of potential unmet concerns, the development of a prompt list should help to elicit these and provide additional means to targeted support.
The needs of head and neck cancer (HNC) carers tends to be poorly addressed as most support systems are directed towards patients. This systematic review synthesises the existing qualitative evidence from carers for adult HNC patients to explore their experiences and needs as a basis to inform the initial development of an item prompt list for HNC carers for use in routine clinical practice.
Methods
Seven electronic databases were searched from their inception until November 2022, supplemented by citation chaining and snowballing. Primary qualitative or mixed-methods studies reporting the experiences of carers for HNC patients, elicited using interviews, were included. Screening and selection, data extraction and quality assessment (Critical Appraisal Skills Programme Checklist) were independently conducted by two researchers. Data were analysed using inductive thematic synthesis and confidence evaluated using GRADE CERQual.
Results
Thirty studies met the inclusion criteria. Two overarching themes and nine subthemes emerged: (i) the experiences of loss associated with being a carer (loss of: role and everyday routine, certainty leading to emotional distress, security as fear of recurrence prevailed, finances, intimacy and togetherness, enjoyment from social activities); and (ii) factors promoting coping and adjustment to role of carer (information, supportive mechanisms, personal attributes).
Conclusion
New insight into the experiences of HNC carers provides the basis for item generation of a HNC carer prompt tool.
Implications for Cancer Survivors
With such a range of potential unmet concerns, the development of a prompt list should help to elicit these and provide additional means to targeted support.
| Original language | English |
|---|---|
| Article number | e9308 |
| Pages (from-to) | 1-15 |
| Number of pages | 15 |
| Journal | Psycho-oncology |
| Volume | 33 |
| Issue number | 10 |
| DOIs | |
| Publication status | Published (in print/issue) - 27 Sept 2024 |
Bibliographical note
Publisher Copyright:© 2024 The Author(s). Psycho-Oncology published by John Wiley & Sons Ltd.
Keywords
- head and neck neoplasms
- carers
- experiences
- systematic review
- psychological distress
- quality of life
- supportive care
- caregiver burden
- Psycho-oncology
- informal carer
- supportive care needs
- informal caregivers
- Psycho-Oncology
