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Cited by 88Nursing care and researchPalliative and Oncologic CareFamily Caregiving in Mental Illness

The experience of family caregivers of patients with cancer in an Asian country: A grounded theory approach

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Kristanti, Martina Sinta, Effendy, Christantie, Utarini, Adi, Vernooij-Dassen, Myrra, Engels, Yvonne·2019·Palliative Medicine
DOI 10.1177/0269216319833260PMC PMC6537031
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Abstract

BACKGROUND: Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered "normal": a societal and religious obligation. The values underpinning this might influence families' perception of it. AIM: To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks. DESIGN: A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model. SETTING/PARTICIPANTS: The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer. RESULTS: A total of 24 family caregivers participated. "Belief in caregiving" appeared to be the core phenomenon. This reflects the caregivers' conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified. CONCLUSION: We developed a model of family caregivers' experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.

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  • Ten studies did not describe average age.

    “However, it must be highlighted that 10 studies did not describe average age [22,23,24,25,26,27,28,29,30,31].”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [25]

    The Results section reports average ages for both groups: family caregivers had a mean age of 43 and patients a mean age of 55. This contradicts the inclusion of this study among those said not to describe average age. (LLM, conf=0.92)

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  • 10 studies described how the patients' disease process has affected the social interaction of caregivers, who manifest great difficulty in reconciling their role as caregivers and the development of other daily activities, highlighting deterioration of working conditions.

    “With regard to social aspects, 10 studies [24,25,27,31,32,41,49,53,54,55] described how the patients’ disease process has affected the social interaction of caregivers, who manifest a great difficulty in reconciling their role as caregivers and the development of other daily activities, highlighting the deterioration of working conditions.”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [25]

    Split into 2 atoms — 1 confirmed, 1 partially supported, 0 disputed, 0 misattributed, 0 unverifiable. Expand the claim to see per-atom verdicts.

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  • 15 studies described caregivers as mostly spouses or daughters/sons of patients with cancer, usually sharing the same home.

    “As for family bonds, 15 studies described these caregivers as being mostly spouses or daughters/sons of the patients with cancer, usually sharing the same home [22,23,25,26,27,28,30,32,33,34,35,36,37,38,39].”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [25]

    The Methods participant table reports that 20 of 24 caregivers were spouses, daughters, or sons, supporting this paper as one example among the cited studies. The inclusion criteria allowed caregivers who lived with the patient or provided at least three hours of care daily; they do not establish that caregivers usually shared a home. The count of 15 studies belongs to the citing paper's synthesis, not to this individual study. (LLM, conf=0.84)

    Experimental — accuracy not yet measured

  • Eight studies described that care work implies a greater risk for caregivers of suffering physical morbidity with considerable wear, which increases as care burden continues over time.

    “In relation to physical problems, eight studies [25,34,37,40,41,42,43,44] described that care work implies a greater risk for caregivers of suffering physical morbidity with considerable wear, which in fact increases as the care burden continues over time.”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [25]

    The Results (Consequences > Physical impact; page unavailable) report tiredness and neglect of physical health resulting from caregiving, particularly among elderly participants. This supports a physical toll, but the paper does not establish a greater risk of physical morbidity or that the toll increases as caregiving continues over time. (LLM, conf=0.85)

    Experimental — accuracy not yet measured

  • 10 studies described financial problems of caregivers, resulting from costs associated with the disease, lack of financial support of other family members, or difficulty reconciling role as caregivers with work activity.

    “In the economic sphere, 10 studies [25,27,39,44,53,56,57] described the financial problems of people caregivers, resulting from the costs associated with the disease, the lack of financial support of other family members, or the difficulty of reconciling their role as caregivers with their work activity.”

    From Quality of Life in Caregivers of Cancer Patients: A Literature Review (2023) · cites this paper as [25]

    The Results (Contextual factors and Actions) describe treatment and care expenses and caregivers who adjusted careers or gave up jobs. The Discussion also links caregiving to reduced time at work. The paper says some caregivers asked relatives for contributions, but does not establish lack of financial support from family members as a cause of their financial problems; the count of 10 studies is an aggregate claim, not a finding of this individual study. (LLM, conf=0.84)

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Cited by

Sorted by citations

Authors
Kristanti, M. S., Effendy, C., Utarini, A., Vernooij-Dassen, M., & Engels, Y.
Affiliations
  • Universitas Gadjah Mada (ID)
  • Radboud University Medical Center (NL)
Corresponding author
Kristanti, Martina Sinta
ORCID
Venue
Palliative Medicine
Publisher
SAGE Publications
Published
2019-03-27
Volume
33
Issue
6
Pages
676-684
ISSN
  • 0269-2163 (ISSN-L)
  • 1477-030X
DOI
10.1177/0269216319833260
PMC
PMC6537031
OpenAlex
W2923381126
Cited by
88
References
1
Citations by year
2026: 4 · 2025: 20 · 2024: 19 · 2023: 11 · 2022: 15 · 2021: 13 · 2020: 6
FWCI
15.78
Type
journal article
Language
en
Open access
Licence
Locations
  • Palliative Medicine (publishedVersion, cc-by-nc)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by-nc)
  • PubMed Central (publishedVersion, cc-by-nc)
  • PubMed (publishedVersion)
  • Radboud Repository (Radboud University) (submittedVersion)
  • Radboud Repository (Radboud University) (submittedVersion, other-oa)
Funders
Netherland Fellowship program
Topics
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
Keywords
family caregivers, cancer, caregiver experiences, social support, coping strategies, task sharing, sacrifice, Indonesian culture, spiritual care
MeSH terms
Adult, Aged, Aged, 80 and over, Family, Female, Humans, Indonesia, Male, Middle Aged, Neoplasms, Palliative Care, Quality of Life, Social Support, Stress, Psychological, Caregivers, Culturally Competent Care, Grounded Theory

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