Adjusting to pancreatic cancer: Perspectives from first-degree relatives
Abstract
Objective: The combination of a difficult early diagnosis, few treatment options, and high mortality rate could make the experience of pancreatic cancer different from the experience of other cancers, both for patients and families. To design effective interventions for families with a diagnosis of pancreatic cancer, there is need for a model of family members' adjustment to cancer that is specific to these unique aspects of pancreatic cancer. Method: Trained clinical interviewers and a genetic counselor conducted phone interviews with 22 first-degree relatives—parents, siblings, and offspring—from a pool of participating family members. The interview transcripts were analyzed using qualitative coding methods. Results: Participants expressed both similar and different themes compared with other literature on adjustment to cancer. Relatives struggled through both the initial diagnosis and its aftermath, seeking to balance their own strong feelings with the needs of the ailing family member. Support systems were identified as very important, regardless of the source of the support, and those without them reported more intense difficulties. Many family members felt that everything was happening too fast to slow down and process what was going on. Significance of results: Pancreatic cancer families may be unable to cope by taking one day at a time and must find other ways of dealing with stress. Also, the compressed timeline between diagnosis and death may heighten certain coping behaviors, such as the reevaluation of one's priorities.
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Eight included studies were cross-sectional studies and one study was a prospective cohort design.
“Eight studies were cross-sectional studies [5, 27–33]. One study was a prospective cohort design [6].”
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 [31]
From a maximum of 22 points, three qualitative studies scored 17 points and two scored 18 points.
“From a maximum of 22 points, three studies scored 17 points [27–30] and two studies scored 18 points [31].”
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 [31]
Five included studies were conducted in the USA, three in Australia, and one in Denmark.
“Five studies (three qualitative, two quantitative) were conducted in the USA [5, 28, 29, 31, 33], three (two qualitative, one quantitative) in Australia [27, 30, 32] and one quantitative study in Denmark [6].”
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 [31]
Data was collected through questionnaires alone in four studies, semi-structured interviews with individual participants in three studies, focus groups in two studies, and questionnaire and semi-structured interview together in one study.
“Data was collected through questionnaires alone in four studies [5, 32, 33], semi-structured interviews with individual participants in three studies [29–31], focus groups in two studies [27, 28] and questionnaire and semi-structured interview together in one study [29].”
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 [31]
Informal caregivers of pancreatic cancer patients have an unmet need for support and briefings from health care professionals.
“Three studies raised the need for support and briefings from health care professionals [28, 31] or a support system for informal caregivers [27, 31].”
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 [31]
Four studies reported qualitative data on unmet needs of informal caregivers of pancreatic cancer patients, and no quantitative data on unmet needs was available.
“Four studies reported qualitative data on unmet needs of informal caregivers [27–29, 31]. No quantitative data was available on unmet needs.”
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 [31]
The lack of consideration for the relationship between researcher and participants and unsatisfactory data analysis were the two most frequent reasons points were deducted during quality assessments.
“The lack of consideration for the relationship between researcher and participants [30, 31] and unsatisfactory data analysis [27–30] were the two most frequent reasons points were deducted during quality assessments.”
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 [31]
Informal caregivers' mean score on depressive symptoms, as measured by the CES-D, was low (2.8) but 32% of informal caregivers scored 4 or higher.
“Informal caregivers’ mean score on depressive symptoms, as measured by the CES-D, was low (2.8) but 32% of informal caregivers scored 4 or higher [31]”
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 [31]
Informal caregivers reported feeling alone during the process of caregiving.
“They also reported feeling alone during the process of caregiving [31].”
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 [31]
Informal caregivers reported needing to ask clear questions to a provider or have someone explain things to them, representing unmet information needs.
“They reported they needed to ask clear questions to a provider [31] or have someone explain things to them [27], both of which represent unmet information needs.”
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 [31]
Cited by
Sorted by citations
Chong, E., Crowe, L., Mentor, K., Pandanaboyana, S., & Sharp, L. (2023) · Supportive Care in Cancer · doi:10.1007/s00520-022-07468-7 · Cited by 86 · see citing works
“From a maximum of 22 points, three studies scored 17 points [27–30] and two studies scored 18 points [31].”
Influential
- Authors
- Petrin, K., Bowen, D. J., Alfano, C. M., & Bennett, R.
- Affiliations
- Boston University (US)
- National Cancer Institute (US)
- University of Washington (US)
- Corresponding author
- Bowen, Deborah J.
- Venue
- Palliative and Supportive Care
- Publisher
- Cambridge University Press (CUP)
- Published
- 2009-09
- Volume
- 7
- Issue
- 3
- Pages
- 281-288
- ISSN
- 1478-9515 (ISSN-L)
- 1478-9523
- OpenAlex
- W2109570785
- Cited by
- 41
- References
- 0
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 8 · 2023: 5 · 2022: 3 · 2021: 2 · 2020: 2 · 2019: 3 · 2018: 3 · 2017: 1 · 2015: 3 · 2014: 1 · 2013: 4 · 2012: 1
- FWCI
- 2.16
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Palliative & Supportive Care (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Social Sciences › Psychology › Clinical Psychology › Grief, Bereavement, and Mental Health
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Keywords
- pancreatic cancer, family adjustment, first-degree relatives, family caregivers, coping, social support, grief, genetic counseling
- MeSH terms
- Adaptation, Psychological, Adult, Aged, Attitude to Death, Communication, Family Relations, Female, Humans, Interview, Psychological, Male, Middle Aged, Pancreatic Neoplasms, Pilot Projects, Prognosis, Social Support, Caregivers, Genetic Predisposition to Disease, Early Diagnosis
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