Family Coping After Death of Patients in Palliative Care: A Systematic Review

Cardoso, Aline Aparecida; Gutierrez, Beatriz Aparecida Ozello; Luiz, Adriana Benedita

doi:10.1590/1982-4327e3507

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Psychology of Health • Paidéia (Ribeirão Preto) 35 • 2025 • https://doi.org/10.1590/1982-4327e3507 linkcopy

Family Coping After Death of Patients in Palliative Care: A Systematic Review

Enfrentamento Familiar Pós-Morte de Pacientes em Cuidados Paliativos: Revisão Sistemática

Afrontamiento Familiar Después de la Muerte de Pacientes en Cuidados Paliativos: Revisión Sistemática

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract:

Emotional care has proven important in the face of experiences of loss through death, influencing the perception of grief and individual well-being. This study aimed to verify the coping resources adopted by family members after the death of patients under palliative care. The JBI SUMARI method for qualitative systematic reviews was used. Eleven of the 158 articles were retained, synthesized, and grouped by credibility, then classified into thematic categories after metasynthesis. It was concluded that family members face emotions such as regret, fear, and sadness, exacerbated by communication difficulties and uncontrolled physical symptoms. Preparation for death stands out as an effective coping method, highlighting the importance of clear communication and collaborative care planning with the team. Although Palliative Care is valued, early access remains limited.

Keywords:
family; death and dying; palliative care; coping behavior; caregivers

Authorship

person Aline Aparecida Cardoso

conception and design of this study · to data analysis and interpretation · and to the manuscript revision and approval of the final version · assume public responsibility for the content of the manuscript Aline Aparecida Cardoso has a master’s degree from the postgraduate program in Gerontology, Universidade de São Paulo, São Paulo-SP, Brazil.

school Universidade de São Paulo, São Paulo, SP, BrazilUniversidade de São PauloBrazilSão Paulo, SP, Brazil Universidade de São Paulo, São Paulo, SP, Brazil

0000-0003-4100-3526

person Beatriz Aparecida Ozello Gutierrez

conception and design of this study · to data analysis and interpretation · and to the manuscript revision and approval of the final version · assume public responsibility for the content of the manuscript. Beatriz Aparecida Ozello Gutierrez is a Full Professor of the Escola de Artes, Ciência e Humanidades, Universidade de São Paulo, São Paulo-SP, Brazil.

school Universidade de São Paulo, São Paulo, SP, BrazilUniversidade de São PauloBrazilSão Paulo, SP, Brazil Universidade de São Paulo, São Paulo, SP, Brazil

0000-0001-6901-6439

person Adriana Benedita Luiz

conception and design of this study · to data analysis and interpretation · and to the manuscript revision and approval of the final version · assume public responsibility for the content of the manuscript Adriana Benedita Luiz has a master’s degree from the postgraduate program in Gerontology, Universidade de São Paulo, São Paulo-SP, Brazil.

school Universidade de São Paulo, São Paulo, SP, BrazilUniversidade de São PauloBrazilSão Paulo, SP, Brazil Universidade de São Paulo, São Paulo, SP, Brazil

0000-0002-6325-7028

personCorrespondence address: Aline Aparecida Cardoso. Universidade de São Paulo. Rua Gelindo Cia 18, Vila Bela, Americana-SP, Brazil. CEP 13.474-712. Email:
cardosoaline@live.com

Associate editor:

Wanderlei Abadio de Oliveira

SCIMAGO INSTITUTIONS RANKINGS

Universidade de São Paulo, São Paulo, SP, BrazilUniversidade de São PauloBrazilSão Paulo, SP, Brazil Universidade de São Paulo, São Paulo, SP, Brazil

Figures | Tables

Figures (2)
Tables (3)

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Figure 1 Numerical distribution of studies according to database

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Figure 2 Fluxograma PRISMA

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Table 1 Assessment of the methodological quality of the included studies

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Table 2 Characteristics of the included studies

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Table 3 Presentation of the metasynthesis with the findings, categories, and synthesized finding

imageFigure 1 Numerical distribution of studies according to database open_in_new

imageFigure 2 Fluxograma PRISMA open_in_new

table_chartTable 1 Assessment of the methodological quality of the included studies

Main Author	Q1	Q2	Q3	Q4	Q5	Q6	Q7	Q8	Q9	Q10
Aoun et al. (2021)	Y	Y	Y	Y	Y	Y	N	Y	Y	Y
Aoun et al. (2011)	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Digiacomo et al.	Y	Y	Y	Y	Y	Y	N	Y	Y	Y
Hudson	Y	Y	Y	Y	Y	N	N	Y	Y	N
Lennaerts-Kats et al.	Y	Y	Y	Y	Y	Y	N	Y	Y	Y
Lee et al.	Y	Y	Y	Y	Y	Y	N	Y	Y	Y
Mason e Hodgkin	Y	Y	Y	Y	Y	Y	N	Y	Y	Y
McGinley e Waldrop	Y	Y	Y	Y	Y	Y	N	Y	Y	Y
Thomas et al.	Y	Y	Y	Y	Y	Y	N	Y	Y	Y
Tong et al.	Y	Y	Y	Y	N	Y	N	Y	Y	Y
Ho et al.	Y	Y	Y	Y	Y	Y	N	Y	Y	Y

Note. Yes: Y); (N: No); (O: Obscure).

table_chartTable 2 Characteristics of the included studies

Author	N	Phenomenon of Interest	Context	Study method	Findings
Aoun et al. (2021) Australia	393	The experience of the bereaved caregiver and their coping after the death of a patient with neurodegenerative disease.	After death	A national qualitative questionnaire survey using a P13 tool to identify reactions to prolonged bereavement.	Bereavement support was considered fundamental. Caregivers who had a high-risk index for complicated grief did not have many internal or external resources to help them cope.
Aoun (2011) Australia	16	The caregiver’s experience before and after the death of family members with neurodegenerative diseases.	Before and after death	Exploratory qualitative research, using a sociodemographic questionnaire, semi-structured interviews and the prolonged bereavement assessment tool (P13).	Family caregivers who presented characteristics of complicated bereavement had access to PC with the patient at a late stage, impacting on their preparation for the loss.
DiGiacomo 2013 Australia	21	As experiências de mulheres idosas em relação ao cuidado conjugal no final da vida.	After death	Qualitative, longitudinal research using semi-structured interviews.	The study highlighted the feminization of aging, emphasizing the need for professional/assistance work to meet the needs of these women.
Hudson (2006) Australia	45	Family caregivers’ perceptions of death and the professional strategies that helped them prepare for death.	After death	Qualitative, exploratory research using a structured questionnaire and an Inventory of Traumatic Grief (ITG).	Most caregivers perceived positive characteristics in their experience, due to effective communications and support provided by specialized PC teams.
Lennaerts-Kats et al. (2022) Netherlands	8	The needs of Parkinson’s patients in the palliative phase and their family caregivers.	During and after death	Mixed, exploratory research using a semi-structured questionnaire and the Hoehn and Yahr, Schwab and England and unified Parkinson’s disease assessment scales.	Bereaved family members felt that life today was a balancing act between “mourning” and “moving on”, which was often a lonely journey. For two caregivers interviewed, death was a relief for the patient.
Lee et al. (2022) Australia	14	The experiences of caregivers of patients with mesothelioma (lung cancer).	During and after death	Qualitative study, using semi-structured interviews.	Bereavement may have been negatively affected by the lack of information and precarious assistance in PC. Caregivers who had access to PC had their emotional burden reduced.
Mason and Hodgkin (2019) Australia	10	The experience of the palliative caregiver in rural Australia.	During and after death	Qualitative study, using semi-structured interviews.	Being listened to, having choices, obtaining family and professional support were considered important by the participants. Being referred to the PC specialty was a significant factor.
McGinley and Waldrop (2020) USA	108	Communication and care and their influence on the well-being of family caregivers during bereavement.	After death	Qualitative study, using semi-structured interviews.	The results indicate that families are more likely to feel emotionally prepared for loss and bereavement when health professionals are available to communicate clearly, consistently and compassionately.
Thomas et al. (2018) United Kingdom	59	The experiences of family caregivers who have recently cared for an elderly person at the end of life.	After death	Qualitative study, using semi-structured interviews.	It was found that the quality of clinical practice could be improved if teams specializing in PC in community settings identified and addressed significant support needs related to the primary concerns of family caregivers.
Tong et al. (2023) Canada	23	The experience of family caregivers with MAiD ( Medical Assistance in Dying), and with bereavement.	After death	Qualitative study, using semi-structured interviews.	Restrictions on hospital visitors had a negative impact on communication and interaction. These experiences resulted in immense emotional distress.
Ho et al. (2019) Singapore	26	The nature of marital interaction patterns among Asian parents of chronically ill children in palliative care.	After death	Qualitative study, using semi-structured interviews.	The results revealed that the participants respected and acknowledged their spouse’s personal coping strategies and also reflected on their new ability to communicate openly about their emotions related to their child’s absence.

table_chartTable 3 Presentation of the metasynthesis with the findings, categories, and synthesized finding

Findings	Thematic Categories	Synthesized Discovery
- Feelings of family members involved in the bereavement process (U) N: seven times - Preparation for death as a coping resource (U) N: four times - The importance of formal and informal support (U) N: four times - Rituals: farewell and funeral N: three times - Avoidance strategies: keeping busy, not thinking about it, postponing conversations (U) N: three times - Difficulty in “accepting terminality” (U) N: three times	Feelings and coping strategies after death - Emotional reactions to death - Feelings of anger, sadness, isolation and relief - Preparation for death vs. avoidance	Family members often faced negative feelings related to loss, symptom management in the face of finitude and inadequate communication with the team. Preparation for death and farewell rituals help with coping, despite the reduction in informal support over time. Clear information and adequate planning provided emotional security, and support from the healthcare system, family members and support groups are crucial.
- Positive experience of palliative care and clear/objective communication (U) N: four times - Negative aspects associated with late referral/access to palliative care (U) N: twice - Need for information in advance of death and care planning (U) N: five times	Characteristics and observations about the PC experienced by family members - CP as a positive feature - Late referral as a negative feature - The importance of communication and care planning shared with the team	Family members described the experience of palliative care positively, but highlighted the failure of early referral, which negatively affected grieving, while early access allowed for better preparation and acceptance of death, highlighting the need for constant support and information for care planning, experiencing death and bereavement.
- Lack of compassion when passing on information (U) N: four times - Insufficient information (U) N: five times	Ineffective communication and lack of professional bereavement support - Emotional distress at the non-empathic behavior of the professional - Difficulty acquiring information during treatment - Lack of specialized support and seeking help during bereavement	The lack of compassion in communication by non-palliative care physicians negatively impacted family members, who stressed the need for palliative care education and professional bereavement support, emphasizing that effective communication is crucial to coping with loss and reducing isolation and anguish after death.

Note. (U): unequivocal; (C): reliable; N* = Number of times it appeared in the articles.

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Universidade de São Paulo, Faculdade de Filosofia Ciências e Letras de Ribeirão Preto, Programa de Pós-Graduação em Psicologia Av.Bandeirantes 3900 - Monte Alegre, 14040-901 , Tel.: (55 16) 3315-3829 - Ribeirão Preto - SP - Brazil
E-mail: paideia@usp.br

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[TFN1] Note. Yes: Y); (N: No); (O: Obscure).