# Standing next to but not being part of: relatives’ experiences of support from healthcare professionals when general palliative care is provided at home

## TL;DR

This study explores how relatives feel unsupported by healthcare professionals when providing palliative care at home and highlights what they need to feel prepared and safe.

## Contribution

The study identifies unmet support needs of relatives in home-based palliative care and suggests tailored interventions to improve their experience.

## Key findings

- Relatives felt overwhelmed and lacked guidance during home-based palliative care.
- They needed to feel seen, informed, and supported before and after the patient's death.
- Tailored interventions and education for relatives are needed to improve their caregiving experience.

## Abstract

Relatives play a crucial role when palliative care is provided at home. More advanced care at home places higher demands on relatives, taking great responsibility, facing challenges, and often lacking adequate knowledge and skills to provide care. Therefore, relatives need support from healthcare professionals, yet do not receive the needed support. This study aimed to elucidate relatives’ experiences of support from healthcare professionals before and after a patient’s death when general palliative care is provided at home.

A phenomenological hermeneutical method was used. The inclusion criteria were relatives of people who had died, involved in general palliative care at home. The sample consisted of 14 adult relatives involved in general palliative care at home between one week and 12 months. Data were collected through individual interviews between January and May 2025.

Relatives needed to be seen as they felt left out; they felt an overwhelming responsibility; they needed to feel safe at home through guidance from and access to healthcare professionals; they felt the need to know what was happening and what to expect; and they needed help in processing the grief both before and after the patient’s death. These themes formed the main theme: Standing next to but not being part of.

The findings of this study showed a lack of support for relatives before and after the patient’s death but offer insights into what support relatives need from HCPs when general PC is provided at home. Relatives need to feel seen, informed and prepared, to feel safe when care is provided at home, and not feel overwhelmed by the responsibility of the situation. As research continuously reveals that relatives have unmet support needs, this highlights the need for tailored interventions and the targeting of available support actions for improved support. Since relatives play a crucial role in palliative care at home, continued work with education and training for relatives should be prioritised to support them in feeling prepared, obtaining necessary caregiving knowledge and skills, enabling them to cope with the situation at home.

The online version contains supplementary material available at 10.1186/s12904-026-02021-3.