Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Aug 2;23(1):195.
doi: 10.1186/s12904-024-01480-w.

The CAREPAL-8: a short screening tool for multidimensional family caregiver burden in palliative care

Anneke Ullrich  1   2 , Corinna Bergelt  3   4 , Gabriella Marx  5   6 , Anne Daubmann  7 , Gesine Benze  5 , Julia Heine  5 , Lisa-Marie Dickel  5 , Feline Wowretzko  8 , Youyou Zhang  8 , Carsten Bokemeyer  8 , Friedemann Nauck #  5 , Karin Oechsle #  8
Affiliations

The CAREPAL-8: a short screening tool for multidimensional family caregiver burden in palliative care

Anneke Ullrich et al. BMC Palliat Care. .

Abstract

Background: Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care.

Methods: Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires.

Results: Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated.

Conclusions: This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care.

Keywords: Caregiver burden; Family caregiver; Latent class analysis; Palliative care; Screening.

PubMed Disclaimer

Conflict of interest statement

The authors declare no conflicts of interest.

Figures

Fig. 1
Fig. 1
Major stages of developing the screening tool
Fig. 2
Fig. 2
Model of family caregiver classes related to multidimensional family caregiver burden
See this image and copyright information in PMC

References

    1. Williams A, McCorkle R. Cancer family caregivers during the palliative, hospice, and bereavement phases: a review of the descriptive psychosocial literature. Palliat Support Care. 2011;9(3):315–25. 10.1017/S1478951511000265 - DOI - PubMed
    1. Alam S, Hannon B, Zimmermann C. Palliative care for family caregivers. J Clin Oncol. 2020;38(9):926–36. 10.1200/JCO.19.00018 - DOI - PubMed
    1. Oechsle K, Ullrich A, Marx G, Benze G, Heine J, Dickel LM, Zhang Y, Wowretzko F, Wendt KN, Nauck F, et al. Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care. BMC Palliat Care. 2019;18(1):102. 10.1186/s12904-019-0469-7 - DOI - PMC - PubMed
    1. Cengiz Z, Turan M, Olmaz D, Erce Ç. Care burden and quality of life in family caregivers of Palliative Care patients. J Soc Work End Life Palliat Care. 2021;17(1):50–63. 10.1080/15524256.2021.1888844 - DOI - PubMed
    1. McDonald J, Swami N, Pope A, Hales S, Nissim R, Rodin G, Hannon B, Zimmermann C. Caregiver quality of life in advanced cancer: qualitative results from a trial of early palliative care. Palliat Med. 2018;32(1):69–78. 10.1177/0269216317739806 - DOI - PubMed

LinkOut - more resources