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Cited by 215Palliative Care and End-of-Life IssuesPalliative and Oncologic CareGrief, Bereavement, and Mental Health

Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients

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Ullrich, Anneke, Ascherfeld, Lilian, Marx, Gabriella, Bokemeyer, Carsten, Bergelt, Corinna, Oechsle, Karin·2017·BMC Palliative Care
DOI 10.1186/s12904-017-0206-zPMC PMC5424283
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Abstract

BACKGROUND: This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey. METHODS: During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient's admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions. RESULTS: FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for "bodily pain", FCs' quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80-83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3). CONCLUSIONS: This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs' satisfaction with SIPC seemed to be high. A current multicenter study evaluates these findings longitudinally in a large cohort of FCs.

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  • El 96% de los cuidadores familiares de pacientes oncológicos avanzados reportaron tristeza, angustia, penas y agotamiento; un 43% padecía ansiedad moderada/severa y el 41% depresión.

    “el 96% de los cuidadores familiares que participaron, P á g i n a 9949 reportaron: tristeza, angustia, penas y agotamiento, mientras que un 43% padecía ansiedad moderada/severa y el 41% depresión (Ullrich et al., 2017)”

    From Sobrecarga de trabajo en cuidadores de pacientes en cuidados paliativos oncológicos: Una revisión bibliográfica (2023) · cites this paper as Ullrich et al., 2017

    The Discussion reports that 96% of family caregivers had clinically significant distress, not that 96% reported each listed problem. In the Results problem list, sadness, sorrows and exhaustion were each reported by 80–83%; the Discussion confirms that 43% had moderate or severe anxiety and 41% had moderate or severe depression. (LLM, conf=0.92)

    Experimental — accuracy not yet measured

  • La funcionalidad de la persona en cuidado paliativo juega un papel primordial en la sobrecarga del cuidador.

    “la funcionalidad de la persona en cuidado paliativo juega un papel primordial en la sobrecarga del cuidador”

    From Sobrecarga y calidad de vida de cuidadores de personas con cáncer en cuidados paliativos (2021) · cites this paper as [7]

    The Background says caregivers’ perceived burden increases as patients’ disease progresses, which supports a general link between patient condition and caregiver burden. The Results report an association between patient ECOG performance status and caregivers’ perception of palliative-care outcomes, not caregiver burden. The paper does not establish that patient functionality plays a primary role in that burden. (LLM, conf=0.82)

    Experimental — accuracy not yet measured

  • El avance de la enfermedad y la cercanía a la muerte hacen que el cuidador deba suplir más actividades básicas de la vida diaria del paciente y manejar los síntomas de este, lo que genera cansancio e impacto de tipo físico.

    “el avance de la enfermedad y la cercanía a la muerte, hacen que el cuidador deba suplir más actividades básicas de la vida diaria del paciente y manejar los síntomas de este, lo que genera cansancio e impacto de tipo físico”

    From Sobrecarga y calidad de vida de cuidadores de personas con cáncer en cuidados paliativos (2021) · cites this paper as [7]

    The Background says caregivers’ perceived burden increases as the patient’s disease progresses, and the Results (Table 4) report exhaustion and other physical problems among caregivers. The paper does not establish that approaching death requires caregivers to take over more basic daily activities or manage more symptoms, nor that those specific tasks cause the physical impact. (LLM, conf=0.87)

    Experimental — accuracy not yet measured

  • Similar findings were reported across several other recent studies from the West.

    “Similar findings were also reported across several other recent studies from the West [15-18].”

    From Exploring the Unmet Needs of Cancer Caregivers in India: A Cross-Sectional Survey (2024) · cites this paper as [16]

  • Previous studies have found that quality of life in family caregivers of palliative care patients is lower than in other populations.

    “Diferentes estudios 6,7 sobre la calidad de vida en cuidadores familiares de personas en cuidados paliativos han identificado que esta es menor que en otras poblaciones.”

    From Sobrecarga y calidad de vida de cuidadores de personas con cáncer en cuidados paliativos (2021) · cites this paper as [7]

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Research works printed but not linked: 40

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Authors
Ullrich, A., Ascherfeld, L., Marx, G., Bokemeyer, C., Bergelt, C., & Oechsle, K.
Affiliations
  • University Medical Center Hamburg-Eppendorf (DE)
  • Universitätsmedizin Göttingen (DE)
Corresponding author
Ullrich, Anneke
ORCID
Venue
BMC Palliative Care
Publisher
Springer Science and Business Media LLC
Published
2017-05-10
Volume
16
Issue
1
Pages
31-31
ISSN
1472-684X (ISSN-L)
DOI
10.1186/s12904-017-0206-z
PMC
PMC5424283
OpenAlex
W2613177109
Cited by
215
References
48
Citations by year
2026: 14 · 2025: 29 · 2024: 34 · 2023: 27 · 2022: 34 · 2021: 30 · 2020: 21 · 2019: 17 · 2018: 6 · 2017: 3
FWCI
12.07
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • BMC Palliative Care (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
  • GoeScholar The Publication Server of the Georg-August-Universität Göttingen (Georg-August-Universität Göttingen) (submittedVersion, cc-by)
Funders
Cancer Society of Hamburg, Germany ("Hamburger Krebsgesellschaft e.V.")
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Social Sciences › Psychology › Clinical Psychology › Grief, Bereavement, and Mental Health
Keywords
family caregivers, advanced cancer, inpatient palliative care, quality of life, psychological distress, anxiety, depression, unmet needs, caregiver satisfaction, caregiver burden
MeSH terms
Academic Medical Centers, Adult, Aged, Aged, 80 and over, Anxiety, Depression, Female, Humans, Inpatients, Male, Middle Aged, Neoplasms, Palliative Care, Personal Satisfaction, Pilot Projects, Quality of Life, Surveys and Questionnaires, Caregivers, Outcome Assessment, Health Care, Cost of Illness

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