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What do family caregivers of patients with life-threatening diseases need from healthcare professionals? A qualitative study
  1. Hinke Elisabeth Hoffstädt1,
  2. Marcella Cecilia Tam1,
  3. Arianne Stoppelenburg1,2,
  4. Rik Stoevelaar1,
  5. Leti van Bodegom-Vos3,
  6. Jenny Theodora van der Steen4,5,6,
  7. Yvette Milene van der Linden1,2 and
  8. Iris Dewi Hartog1,2
  1. 1 Center of Expertise in Palliative Care, Leiden University Medical Center, Leiden, Netherlands
  2. 2 Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, Netherlands
  3. 3 Biomedical Data Sciences, section Medical Decision Making, Leiden University Medical Center, Leiden, Netherlands
  4. 4 Public Health and Primary Care, Leiden University Medical Center, Leiden, Netherlands
  5. 5 Primary and Community Care, Radboud university medical center, Nijmegen, Netherlands
  6. 6 Cicely Saunders Institute, King's College London, London, UK
  1. Correspondence to Hinke Elisabeth Hoffstädt; h.e.hoffstadt{at}lumc.nl

Abstract

Objectives To explore the common ground of what family caregivers need in their various roles (caregiver, care recipient and patient’s partner, child or friend) from healthcare professionals across healthcare settings and disease trajectories.

Design Interviews were conducted with family caregivers of patients with life-threatening diseases who were treated at home, in hospitals, nursing homes or hospices between 2017 and 2022. Reflexive thematic analysis was performed.

Setting/participants 63 family caregivers of 65 patients were interviewed. Of the patients, 36 (55%) had COVID-19 and 29 (45%) had other life-threatening diseases (eg, advanced cancer, dementia). The majority of family caregivers were women (83%) and children of the patient (56%).

Results Three themes were developed regarding family caregivers’ core needs across their different roles: (1) ‘feeling seen and valued’, (2) ‘experiencing trust in the provided care’ and (3) ‘experiencing guidance and security’. Actions of healthcare professionals that meet those needs relate to their contact and relationship with family caregivers, information provision, practical and emotional support, the care for the patient and facilitating the connection between family caregivers and patients.

Discussion Healthcare professionals should be trained in meeting family caregivers’ core needs, in which their (collaborative) relationship with them plays an important role. Efforts to meet the core needs should be incorporated into healthcare organisations’ workflows, and future research should investigate related barriers and facilitators.

  • Supportive care
  • Bereavement
  • Palliative Care
  • Family management

Data availability statement

No data are available.

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Data availability statement

No data are available.

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Footnotes

  • X @lvanbodegomvos

  • Presented at Portions of this manuscript were presented at the 2023 World Congress of the European Association for Palliative Care.40

  • Contributors MCT, YMvdL, JTvdS, LB, IDH, AS, and HEH contributed to the design of the study. MCT, AS, IDH, and RS were involved in data collection. IDH, HEH and RS coded the transcripts. IDH and HEH developed the themes, while seeking input from MCT, JTvdS, AS and YMvdL. HEH drafted the manuscript under close supervision of IDH. All coauthors were involved in the critical revision of the manuscript and approved its final version. IDH acts as guarantor for this manuscript.

  • Funding The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by The Netherlands Organization for Health Research and Development (grant numbers 844001312, 844001804 and 844001706).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; internally peer reviewed.