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Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers
  1. Vera P Sarmento1,2,
  2. Marjolein Gysels1,3,
  3. Irene J Higginson1 and
  4. Barbara Gomes1,4
  1. 1 Department of Palliative Care, Policy and Rehabilitation, King's College London, Cicely Saunders Institute, London, UK
  2. 2 Department of Medicine, Hospital do Espírito Santo de Évora, Évora, Portugal
  3. 3 Centre for Social Science and Global Health, University of Amsterdam, Amsterdam, The Netherlands
  4. 4 Faculty of Medicine, University of Coimbra, Coimbra, Portugal
  1. Correspondence to Dr Vera P Sarmento, Department of Medicine, Hospital do Espírito Santo de Évora, Serviço de Medicina 2, Lg. Do Sr. da Pobreza, s/n, Évora 7000-811, Portugal; verapsarmento{at}gmail.com

Abstract

Objective To understand patients and family caregivers' experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users.

Methods We performed a meta-ethnography of qualitative evidence following PRISMA recommendations for reporting systematic reviews. The studies were retrieved in 5 electronic databases (MEDLINE, EMBASE, PsycInfo, BNI, CINAHL) using 3 terms and its equivalents (‘Palliative’, ‘Home care’, ‘Qualitative research’) combined with ‘AND’, complemented with other search strategies. We included original qualitative studies exploring experiences of adult patients and/or their family caregivers (≥18 years) facing life-limiting diseases with palliative care needs, being cared for at home by specialist or intermediate home palliative care services.

Results 28 papers reporting 19 studies were included, with 814 participants. Of these, 765 were family caregivers and 90% were affected by advanced cancer. According to participants' accounts, there are 2 overarching components of home palliative care: presence (24/7 availability and home visits) and competence (effective symptom control and skilful communication), contributing to meet the core need for security. Feeling secure is central to the benefits experienced with each component, allowing patients and family caregivers to focus on the dual process of living life and preparing death at home.

Conclusions Home palliative care teams improve patients and caregivers experience of security when facing life-limiting illnesses at home, by providing competent care and being present. These teams should therefore be widely available and empowered with the resources to be present and provide competent care.

  • Hospice care
  • Patient preference
  • Qualitative research
  • Home care services
  • Palliative Care

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Twitter Follow Vera Sarmento @Vera P Sarmento

  • Contributors VPS designed and piloted the protocol under BG and IJH supervision. VPS identified and screened the studies, recorded and analysed the data, and wrote the report. MG participated in the screening and analyses, was closely involved in all steps and guided the interpretation process. IJH assessed the feasibility and usefulness of the review, with a major contribution during the protocol development and report of the results. BG directly supervised all steps of the review from its inception, provided the classification criteria for the levels of specialisation of home palliative care services and was involved in screening and analyses discussions. All authors contributed to this manuscript and agreed on the final version.

  • Funding This study was funded by the Calouste Gulbenkian Foundation in the context of the DINAMO Project. DINAMO aims to enhance advanced training and research to optimise home palliative care in Portugal. Principal investigator: BG. Scientific director: IJH. Other members of DINAMO: Ana Lacerda, Catarina Ribeiro, Diogo Martins-Branco, Duarte Soares, Helder Aguiar, Maja de Brito, Pedro L. Ferreira, Rita Canario and VPS. IJH is an NIHR Senior Investigator and Head of Department of Palliative Care, Policy and Rehabilitation at King's College London.

  • Competing interests None declared.

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

  • Data sharing statement A table of the full reciprocal translation with participants' quotes and explanations offered by the authors to illustrate the interpretation and identification of the key components as such is available as WDS. The Excel file with the recording table is available on request from the corresponding author at verapsarmento@gmail.com.

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