The Perspective of Family Members: Experiences and Perceptions of Palliative Care Practice
DOI:
https://doi.org/10.36489/saudecoletiva.2026v17i104p18990-19003Keywords:
Palliative Care, Family Experience, Patient CareAbstract
Objectives: To understand the experiences of family members of patients in palliative care and to identify
the emotional, social, and practical aspects involved in the process of accompanying and supporting the patient. Methods: This is a qualitative research study conducted between August and September 2025, involving caregivers of patients who were or are in palliative care. The Snowball technique, a chain sampling method, was used for data collection. Content Analysis, as proposed by Bardin, was adopted for data analysis. The research was approved by the Research Ethics Committee (CEP) of the Pontifical Catholic University of Minas Gerais (PUC Minas) CAAE: CAAE 83057624.3.0000.5137. Results: Family members face physical, emotional, and financial overload, impacting family dynamics through unity and conflict. Professional support often proved insufficient, while coping strategies, spiritual support, and material assistance mitigated
the negative effects of care. Conclusion: Palliative care profoundly impacts patients and families, generating physical, emotional, financial, and social burden for caregivers. Despite the difficulties, care can strengthen
family bonds and promote solidarity. Gaps in professional support highlight the need for integrated and humanized strategies. Public policies and support networks are essential to provide comprehensive support to caregivers. Limitations include a restricted sample size, subjective data, and the absence of longitudinal follow-up.
References
Organização Mundial da Saúde (OMS). Relato de alívio da dor oncológica e cuidados paliativos. Genebra: OMS; 2002. Disponível em: https://apps.who.int/iris/handle/10665/39524.
Gruß I, Firemark A, Funk MJ, Hertz-Picciotto I, Dunn J, Tulsky J, et al. Satisfaction with primary care providers and health care services among patients with chronic pain: a mixed-methods study. J Gen Intern Med. 2020;35:190–7. DOI: https://doi.org/10.1007/s11606-019-05339-2
Carvalho FC, Bonfada D, Souza LPS, Medina MG. Associação entre avaliação elevada da Atenção Primária à Saúde, estado de saúde e uso dos serviços de saúde no Brasil. Saúde Debate. 2024;48(141):e8666. DOI: https://doi.org/10.1590/2358-289820241418666i
Starfield B. Atenção primária: equilíbrio entre necessidades de saúde, serviços e tecnologia. Brasília: UNESCO; 2006.
Sarti TD, Almeida APS, Fontenelle LF. Crise global da atenção primária à saúde. Rev Bras Med Fam Comunidade. 2024;19(46):4070. DOI: https://doi.org/10.5712/rbmfc19(46)4070
Dias MF, Costa MMS, Clausen NC. A importância dos cuidados paliativos exercidos por médicos de família e comunidade na Atenção Primária à Saúde: uma revisão narrativa. Rev Bras Med Fam Comunidade. 2024;3416. DOI: https://doi.org/10.5712/rbmfc19(46)3416
Panisi MEL, Rodrigues ERS, Gomes ICA, Menezes MFP, Viana MNS, França CMJ. A perspectiva dos familiares frente aos pacientes em cuidados paliativos: uma revisão integrativa. Rev Educ Saúde. 2024;12(Supl 2).
Alves T, Cruz AN, Almeida DR, Cardoso LPS, Pires GS, Vasconcelos RMA. A percepção dos sentimentos dos familiares de pacientes em cuidados paliativos: revisão integrativa. Nursing (Ed bras). 2025;29(320):10482–8. DOI: https://doi.org/10.36489/nursing.2025v29i320p10482-10488
Goodman LA. Snowball sampling. Ann Math Stat. 1961;32(1):148–70. DOI: https://doi.org/10.1214/aoms/1177705148
Baldin N, Munhoz EMB. Snowball (bola de neve): uma técnica metodológica para pesquisa em educação ambiental comunitária. Rev Pesqui Educ Ambient. 2012;7(1):65–77.
Brasil. Ministério da Saúde. Conselho Nacional de Saúde. Resolução nº 510, de 7 de abril de 2016. Diário Oficial da União. 24 mai 2016.
Lapa L, Cardoso M, Rego F. Informal caregiver burden in palliative care and the role of the family doctor: a scoping review. Healthcare. 2025;13(8):939. DOI: https://doi.org/10.3390/healthcare13080939
Zhang Y, Zhang S, Liu C. Caregiver burden among family caregivers of patients with advanced cancer in a palliative context: a mixed-method study. J Clin Nurs. 2023;32(21–22):7751–64. DOI: https://doi.org/10.1111/jocn.16872
Marinho JDS, Batista IB, Nobre RADS, Guimarães MSA, Santos-Orlandi AA, Brito TRP, et al. Burden, satisfaction caregiving, and family relations in informal caregivers of older adults. Front Med. 2022;9:1059467. DOI: https://doi.org/10.3389/fmed.2022.1059467
Suresh A, TS G, Jaya S. Factors influencing caregiver burden and its prevalence level amongst family caregivers of patients with palliative care needs and serious illnesses. BMC Palliat Care. 2025;24:289. DOI: https://doi.org/10.1186/s12904-025-01925-w
Silva ARF, Fhon JR, Rodrigues RAP, Leite MTP. Caregiver overload and factors associated with care provided to patients under palliative care. Rev Bras Enferm. 2021;39(1):10. DOI: https://doi.org/10.17533/udea.iee.v39n1e10
Salleti LC. Dinâmica familiar e rede de apoio de cuidadores familiares de pessoas com câncer progressivo e suas necessidades para a integralidade no cuidado. Rev Gaúcha Enferm. 2024;45:e20240019. DOI: https://doi.org/10.1590/1983-1447.2024.20240019.en
Magalhães AS, Maia APS, Balbuena AJA, Moura FOS, Silva MAD, Coêlho PDLP, et al. Percepções do enfermeiro quanto à avaliação da família em um interior do Amazonas. Rev Eletr Acervo Enferm. 2023;23(1):e11804. DOI: https://doi.org/10.25248/reaenf.e11804.2023
Andrade ICS, Aragão BO, Duarte HSS, et al. Development evaluation among families of people with suicidal behavior: an application of the Calgary model. Cogitare Enferm. 2024;29:e92361. DOI: https://doi.org/10.1590/ce.v29i0.96418
Kim B, Hwang IC, Ahn HY, Lee JW. Family relationships and caregiver burden among family caregivers of patients with terminal cancer. BMC Palliat Care. 2025;24:207. DOI: https://doi.org/10.1186/s12904-025-01855-7
Moraes LCM, Telles AC, Bittencourt NCCM, Fernandes BB, Santos BB, Baixinho CRSL, et al. Rede de cuidado formal e informal do familiar que cuida do paciente em cuidados paliativos oncológicos no domicílio. Ciênc Saúde Colet. 2025;30(5):e02182025. DOI: https://doi.org/10.1590/1413-81232025305.02182025
Delfino JD, Oliveira AB, Eufrazio LO, Nunes GE, Souza ES. Práticas de humanização no atendimento a pacientes em cuidados paliativos. Rev Iberoam Hum Ciênc Educ. 2025;11(6):2019–31. DOI: https://doi.org/10.51891/rease.v11i6.19878
