The interaction between informal cancer caregivers and health care professionals: a survey of caregivers’ experiences of problems and unmet needs
Abstract
Purpose In order to meet the caregiving challenges, informal caregivers often need a substantial level of interaction with health care professionals (HCPs). This study investigated to which extent the cancer caregivers' needs regarding the interaction with HCPs are met and the associations between dissatisfaction with the interaction and socio-demographic and disease-related variables.Methods In a cross-sectional questionnaire study, cancer patients with various diagnoses and disease stages were invited to pass on the 'cancer caregiving tasks, consequences and needs questionnaire' (CaTCoN) to up to three of their caregivers.Results A total of 590 caregivers (related to 415 (55 %) of 752 eligible patients) participated. Although many caregivers were satisfied, considerable proportions experienced problems or had unmet needs regarding the interaction with HCPs. Prominent problematic aspects included optimal involvement of the caregivers in the patients' disease, treatment and/or care (30 % were dissatisfied), attention to the caregivers' wellbeing (e.g., 51 % of the caregivers reported that HCPs only sometimes or rarely/never had shown interest in how the caregivers had been feeling), and provision of enough information to the caregivers (e.g. 39 % were dissatisfied with the amount of time spent on informing caregivers). The patients' adult children and siblings, younger caregivers and caregivers to younger patients tended to report the highest levels of interaction problems and unmet needs.Conclusions The caregivers' dissatisfaction with the interaction with HCPs was pronounced. More focus on and involvement of the caregivers, in a way that matches the caregivers' needs, is still warranted.
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Partners of cancer patients are often involved in the illness trajectory by providing informal care and emotional support and regularly take on responsibilities of their ill spouse and household in addition to their own.
“Partners are often involved in the illness trajectory by providing informal care and emotional support, and they regularly have to take on responsibilities of their ill spouse and the household, in addition to their own [1,2].”
Despite the importance of informal caregivers to the modern health system, they report being seldom acknowledged, that health professionals rarely show interest in them and their health and ability to cope, and that health professionals spend insufficient time informing them about specific aspects of a disease such as symptoms and side effects.
“Despite the importance of informal caregiver to the modern health system, they report being seldom acknowledged, that health professional rarely show interest in them (and their health and ability to cope) and that health professionals spend insufficient time informing them about specific aspects of a disease such as symptoms and side effects [45].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [45]
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Bahrami, M., Sebzari, A., & Nasiri, A. (2024) · Supportive Care in Cancer · doi:10.1007/s00520-024-08575-3 · Cited by 2 · see citing works
Care for the Caregiver : Internet intervention for informal caregivers in Lithuania
Biliūnaitė, I. (2022) · Linköping studies in behavioural science · doi:10.3384/9789179291877 · Cited by 1 · see citing works
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Age Differences in Caregiver Burden: The Role of Social Support, Preparation, and Social Contexts
Bacharz, K. C. (2019) · Digital Collections of Colorado (Colorado State University) · Cited by 1 · see citing works
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Hvordan kan sykepleier kommunisere med pårørende til pasienter i livets sluttfase
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Family Caregiving in Cancer Care in Togo: Tasks, Consequences, and Unmet Needs
Adani-Ifè, A., Apélété, A., Doléagbenou, A. K., & Djibril, M. A. (2025) · Journal of Cancer Therapy · doi:10.4236/jct.2025.1610027
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Psychometric validation of the Danish cancer caregiver roles and responsibilities scale
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Caregiving ability assessment tools for family caregivers of disabled older adults: a scoping review
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- Authors
- Lund, L., Ross, L., Petersen, M. A., & Groenvold, M.
- Affiliations
- University of Copenhagen (DK)
- Corresponding author
- Lund, Line
- Venue
- Supportive Care in Cancer
- Published
- 2014-11-29
- Volume
- 23
- Issue
- 6
- Pages
- 1719-1733
- ISSN
- 0941-4355 (ISSN-L)
- 1433-7339
- OpenAlex
- W1991084506
- Cited by
- 89
- References
- 26
- Citations by year
- 2026: 3 · 2025: 7 · 2024: 8 · 2023: 8 · 2022: 13 · 2021: 6 · 2020: 9 · 2019: 14 · 2018: 5 · 2017: 4 · 2016: 8 · 2015: 4
- FWCI
- 12.45
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Supportive Care in Cancer (publishedVersion)
- PubMed (publishedVersion)
- Research at the University of Copenhagen (University of Copenhagen) (submittedVersion)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Keywords
- unmet needs, caregiver well-being, family caregivers, young carers
- MeSH terms
- Adolescent, Adult, Aged, Communication, Cross-Sectional Studies, Data Collection, Female, Health Personnel, Health Services Needs and Demand, Humans, Male, Middle Aged, Neoplasms, Surveys and Questionnaires, Caregivers, Young Adult
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