Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study

Hajradinovic, Yvonne; Tishelman, Carol; Lindqvist, Olav; Goliath, Ida

doi:10.1080/17482631.2018.1511767

Cited by 22 publications

(44 citation statements)

References 58 publications

(65 reference statements)

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“…Circumstances contributing to this could be related to family members’ reports of how they would have liked the staff to have shown more empathy and acknowledged their loss —through expressing their condolences or a gesture like a hug in connection with the death. The findings from previous research is in line with our findings; family members request more compassionate, sensitive and empathetic approaches on the part of healthcare staff at the end of life and at the time of death [ 5 , 36 , 41 , 42 ].…”

Section: Discussionsupporting

confidence: 91%

Support received by family members before, at and after an ill person’s death

et al. 2021

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Background It is widely recognised, that family members are central to care of people with advanced illness, and that support should be provided to all family members in need thereof. The aim of this study was to investigate family members’ experiences of support received during the last three months of life, at the time of death and after the death of a person with advanced illness. Methods A retrospective cross-sectional survey design was employed, using the VOICES(SF) questionnaire and multiple methods for data analyses. The sample consisted of 485 bereaved family members (aged: 20–90 years old, 70% women) of people who died in hospital between August 2016-April 2017. Results Of the family members, 58,8% reported they had received enough help and support during the illness, whereas 30,2% had not. Family members’ comments about support during the illness were mainly related to care the ill person had or had not received, rather than about support they themselves received. Of all family members, 52,8% reported having had enough support at the time of the ill person’s death. Related to support at death, 14,6% reported that the imminence of death was not clear, which was described as having affected their opportunity to be with the dying person at the time of death. Of all, 25,2% had a follow-up conversation after the death, 48% did not and did not want to, and 21% had no follow-up conversation, but would have liked one. A follow-up conversation was described as helpful for the bereavement process, and disappointment was expressed when not receiving support after the death. Conclusions Family members’ experiences of support were partly related to whether the ill person’s care needs were fulfilled. Healthcare staff expressing empathy and respect in the care of dying people and their family members were important for family members’ experiences of support. Family members’ difficulty recognising that death was imminent and the importance of healthcare staff providing them with clear information were expressed in connection with support at death. Follow-up conversations were valued by family members, especially if with a healthcare professional who was present at the time of death.

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Section: Discussionsupporting

confidence: 91%

Support received by family members before, at and after an ill person’s death

et al. 2021

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“…Circumstances contributing to this could be related to family members' reports of how they would have liked the staff to have shown more empathy and acknowledged their loss -e.g., through expressing their condolences or a gesture like a hug in connection with the death. In previous research, family members' requests for more compassionate, sensitive and empathetic approaches on the part of healthcare staff at the end of life and at the time of death have been reported [5,35,40,41].…”

Section: Discussionmentioning

confidence: 99%

Support Received by Family Members Before, at and After an Ill Person’s Death

́Sullivan

Alvariza

Öhlén

et al. 2021

Preprint

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Background: It is widely recognised, that family members are central to care of people with advanced illness, and that support should be provided to all family members in need thereof. The aim of this study was to investigate family members’ experiences of support received during the last three months of life, at the time of death and after the death of a person with advanced illness. Methods: A retrospective cross-sectional survey design was employed, using the VOICES(SF) questionnaire and multiple methods for data analyses. The sample consisted of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital between August 2016-April 2017.Results: Of the family members, 58,8% reported they had received enough help and support during the illness, whereas 30,2% had not. Family members’ comments about support during the illness were mainly related to care the ill person had or had not received, rather than about support they themselves received. Of all family members, 52,8% reported having had enough support at the time of the ill person’s death. Related to support at death, 14,6% reported that the imminence of death was not clear, which was described as having affected their opportunity to be with the dying person at the time of death. Of all, 25,2% had a follow-up conversation after the death, 48% did not and did not want to, and 21% had no follow-up conversation, but would have liked one. A follow-up conversation was described as helpful for the bereavement process, and disappointment was expressed when not receiving support after the death. Conclusions: Family members’ experiences of support were partly related to whether the ill person’s care needs were fulfilled. Healthcare staff expressing empathy and respect in the care of dying people and their family members were important for family members’ experiences of support. Family members’ difficulty recognising that death was imminent and the importance of healthcare staff providing them with clear information were expressed in connection with support at death. Follow-up conversations were valued by family members, especially if with a healthcare professional who was present at the time of death.

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“…Photographs can stimulate new thoughts and stories prompted by, but not necessarily contained in, the photographs, thus adding and eliciting information not easy to access in methods depending on words only. This study derives from the DöBra research programme (Lindquist & Tishelman, ) in a line of action research “Space and place in EoL care” exploring EoL care environments from the perspectives of patients (Tishelman et al, ), family members (Hajradinovic et al, ) and staff. This study follows the COREQ checklist (File S1).…”

Section: Methodsmentioning

confidence: 99%

“…There has been a rapid increase in palliative home care services, and specialist palliative care nurses play a crucial role (Sarmento, Gysels, Higginson, & Gomes, 2017) when working towards the improved quality of life of patients and their families facing problems associated with life-threatening illness. A growing body of research indicates that the care environment has the potential to impact well-being at EoL (Cleeve, Tishelman, Macdonald, Lindqvist, & Goliath, 2018;Hajradinovic, Tishelman, Lindqvist, & Goliath, 2018;Rasmussen & Edvardsson, 2007;Tishelman, Lindqvist, Hajdarevic, Rasmussen, & Goliath, 2016). The care environment may actually promote improved outcomes for both patients (e.g.…”

Section: Introductionmentioning

confidence: 99%

Palliative care nurses’ strategies when working in private homes—A photo‐elicitation study

Alvariza

Mjörnberg

Goliath

2019

Journal of Clinical Nursing

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Aims and objectives To explore palliative care nurses’ work experiences caring for patients at the end of life in private homes. Background The home continues to be a desired place for care and dying; however, professional competence is needed and specialist palliative care nurses play a crucial role, often highly valued by patients and their family members. The private home as a physical work environment for nurses is explored, with both positive and negative aspects being described. To ensure future high‐quality end‐of‐life care, there is a need to describe how palliative care nurses work in private homes. Design Interpretative descriptive. Methods Participant‐generated photographs were used in conjunction with follow‐up interviews with ten palliative home care nurses. Interpretive description was used for analysis. This study follows the COREQ checklist. Results The analysis process resulted in four constructed themes, presented here as strategies used by palliative care nurses: adjusting interactions and actions depending on the environment when entering each unique private home; supporting patients and family members in finding a balance between self‐care, independence and safe care; guiding patients and family members towards and through environmental changes supporting end‐of‐life care at home; and using transitions between homes to reflect, recuperate and prepare. Conclusion Working as a palliative care nurse in private homes clearly requires a variety of skills and competences, here operationalised in different strategies used to promote high‐quality care. Relevance to clinical practice Palliative care nurses’ considerations, insights and competence when performing end‐of‐life care in the diverse environments of private homes can contribute to the development of clinical practice. Knowledge about strategies can be used in nursing practice during everyday work, in nursing education and in the organisation of care, and can inform policy to ensure future high‐quality palliative home care.

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Family members´ experiences of the end-of-life care environments in acute care settings – a photo-elicitation study

Cited by 22 publications

References 58 publications

Support received by family members before, at and after an ill person’s death

Support received by family members before, at and after an ill person’s death

Support Received by Family Members Before, at and After an Ill Person’s Death

Palliative care nurses’ strategies when working in private homes—A photo‐elicitation study

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