Implicaciones de la atención de salud a domicilio en la dinámica  familiar: revisión narrativa

Stefanie Griebeler Oliveira; Silvia Francine Sartor; Kimberly Larroque Velleda; José Ricardo Guimaraes dos Santos Júnior; Janaína Duarte Bender

Stefanie Griebeler Oliveira Universidad Federal de Pelotas (Pelotas, RS, Brasil)
Silvia Francine Sartor Universidad Federal de Pelotas (Pelotas, RS, Brasil)
Kimberly Larroque Velleda Hospital “Santo Antônio” (Brasil)
José Ricardo Guimaraes dos Santos Júnior Universidad Federal de Pelotas, Estrategia Salud de la Familia (ESF), Programa Institucional de Becas de Iniciación a la Investigación (PIBIP) (Brasil)
Janaína Duarte Bender Universidad Federal de Pelotas (Pelotas, RS, Brasil)

Palabras clave: Cuidadores, Servicios de atención de salud a domicilio, Relación profesional-familia

Key-words: Caregivers, Home care services, Professional-family relations

Resumen

Justificativa: La atención de salud a domicilio tiene implicaciones en las relaciones entre paciente, cuidador, familia y profesional de salud. Objetivo: Conocer en la literatura científica los aspectos que interfieren en la dinámica familiar del paciente en régimen de atención de salud a domicilio. Método: Investigación bibliográfica del tipo revisión narrativa, con búsqueda en la base de datos “PubMed”, de la/del National Library of Medicine/National Institutes of Health (NLM/NIH), realizada en marzo de 2015 utilizando 4 descriptores Mesh Database (en inglés): home care services; patient care team; homebound persons; y caregiver. Se identificó un total de 2,920 publicaciones; de estas, 42 fueron seleccionadas y sometidas a análisis de contenido. Resultados: Cabe destacar que los cuidadores son los participantes más comunes en los estudios de investigación, lo que lleva a que su perspectiva predomine en la atención de salud a domicilio, apuntando fragilidades de esta modalidad de cuidado. Pocos estudios abordan la atención de salud a domicilio con pacientes y profesionales de salud. Conclusión: Los cuidadores son las personas más afectadas en la atención de salud a domicilio, ya que se vuelven responsables del mantenimiento del cuidado, y le corresponde al equipo de salud proporcionar apoyo y soporte a través de visitas domiciliarias. La atención de salud a domicilio muestra ser beneficiosa para los pacientes; para los profesionales de salud, posibilita varias acciones de cuidado y la comunicación efectiva juega un papel importante en las relaciones establecidas.

Abstract

Justification: Home care has implications in the relations between patient, caregiver, family, and health professional. Objective: To know in the scientific literature the aspects that interfere with the family dynamics of a patient in a home care regime. Method: Bibliographic survey with a narrative review design, consisting of search in the database ‘PubMed’, from the National Library of Medicine/National Institutes of Health (NLM/NIH), conducted in March 2015 by using 4 descriptors Mesh Database (in English): home care services; patient care team; homebound persons; and caregiver. A total of 2,920 publications were identified; out of these, 42 were selected and submitted to content analysis. Results: It is noteworthy that caregivers are the most common participants in research studies, something which leads their perspective to predominate in home care, pointing out weaknesses of this modality of care. Few studies address home care with patients and health professionals. Conclusion: Caregivers are the most commonly affected individuals in home care, as they become responsible for the maintenance of care, and it is up to the health team to provide aid and support through home calls. Home care shows to be beneficial for patients; for health professionals, it enables several care actions and effective communication plays a major role in the relations established.

Bibliografía

Brito MJM, Andrade AM, Caçador BS, Freitas LFC, Penna CMM. Atenção domiciliar na estruturação da rede de atenção à saúde: trilhando os caminhos da integralidade. Esc Anna Nery. 2013;17(4):603-10.

Kawata LS, Mishima SM, Chirelli MQ, Pereira MJB, Matumoto S, Fortuna CM. Os desempenhos da enfermeira na saúde da família-Construindo competência para o cuidado. Texto Contexto Enferm. 2013;22(4):961-70.

Bôas MLCV. Programa de internação domiciliar do distrito federal: Avanços e desafios.[Tese]. Brasília: Universidade de Brasília, Faculdade de ciências da saúde, Programa de pós-graduação em ciências da saúde; 2014.

Cunha ECN. Entre a vida e a morte: Humanização e cuidados paliativos como meios para enfrentar o fim com dignidade[Monografia]. Campina Grande: Universidade Estadual da Paraíba, Curso de Psicologia, Centro de ciências biológicas e da saúde; 2014.

Lago DMSK. Qualidade de vida de cuidadores domiciliares: Relação entre cuidados paliativos, sobrecarga e finitude humana[Tese]. Brasília: Universidade de Brasília, Curso de pós-graduação em Enfermagem, Departamento de Enfermagem; 2015.

Sousa JM, Alves ED. Competências requeridas do enfermeiro para o cuidado paliativo na atenção domiciliar. Acta Paul Enferm. 2014;28(3):264-9.

Sousa JM, Alves ED. Cuidados paliativos de enfermagem na atenção domiciliar. Rev Enferm UFPE online. 2015;9(2):669-76.

Escaleira ALG. Relação entre a satisfação no trabalho e o suporte social em enfermeiros que desenvolvem ações paliativas[Dissertação]. Vila Real: Universidade de Trás-os-Montes e Alto Douro, Curso em Gestão dos Serviços de Saúde, Departamento de Pós-Graduação; 2013.

Silva MM, Büscher A, Moreira MC, Duarte SCM. Visitando hospices na Alemanha e no Reino Unido na perspectiva dos cuidados paliativos. Esc Anna Nery. 2015;19(2):369-75.

Rother ET. Revisão sistemática X revisão narrativa.Acta Paul Enferm. 2007;20(2):1-2.

Turato ER. Tratado de metodologia da pesquisa clínico-qualitativa: construção teórico-epistemológica, discussão comparada e aplicação nas áreas da saúde e humanas. 3ª ed. Petrópolis, RJ: Vozes, 2008.

Jones RVH, Hansford J, Fiske J. Death from cancer at home: the carers' perspective. BMJ. 1993;306(23):249-51.

Gir E, Reis RK. Alterações no estilo de vida, necessidades e dificuldades enfrentadas pelos cuidadores de portadores de AIDS, no âmbito do domicílio. Rev Esc Enferm. USP. 2001;4(35):328-35.

Tshililo AR, Davhana-Maselesele M. Family experiences of home caring for patients with HIV/AIDs in rural Limpopo Province, South Africa. Nurs health Sci. 2009;11(2):135-43.

Ama NO, Seloilwe ES. Estimating the cost of care giving on caregivers for people living with HIV and AIDS in Botswana: a cross-sectional study. J Int AIDS Soc. 2010;13(1):1-8.

Chepngeno-Langat G, Madise N, Evandrou M, Falkingham J. Gender differentials on the health consequences of care-giving to people with AIDS-related illness among older informal carers in two slums in Nairobi, Kenya. AIDS Care. 2011;23(12):1586-94.

Ishii Y, Miyashita M, Sato K, Ozawa T. A Family’s Difficulties in Caring for a Cancer Patient at the End of Life at Home in Japan. J Pain Symptom Manage. 2012;44(4):552-62.

Blindheim K, Thorsnes SL, Brataas HV, Dahl BM. The role of next of kin of patients with cancer: learning to navigate unpredictable caregiving situations.J Clinc Nurs. 2012;22(1):681-9.

Mercadant S, Porzio G, Valle A, Aielli F, Costanzo V, Adile C, Spedale V, Casuccio A. Emergencies in patients with advanced cancer followed at home. J Pain Symptom Manage. 2012;44(2):295-300.

Figueiredo RM, Turato ER. Needs for assist ance and emotional aspects of caregiving reported by aids pa tient caregivers in a da y-care unit in Brazil. Issues Ment Health Nurs. 2001;22(6):633-43.

Lindsey E, Hirschfeld M, Tlou S, Ncube E. Home-based care in Botswana: experiences of older women and young girls. Health Care Women Int. 2003;24(6):486–501.

Brobäck G, Berterö C. How next of kin experience palliative care of relatives at home. Eur J Cancer Care. 2003;12(1):339–46.

Milberg A, Strang P. Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients’ informal carers. Psychooncology. 2004;13(1):605–18.

Appelin G, Brobäck G, Bertero C. A comprehensive picture of palliative care at home from the people involved. Eur J Oncology Nurs. 2005;9(1):315-24.

Comaru NRC, Monteiro ARM. O cuidado domiciliar a criança em quimioterapia na perspectiva do cuidador familiar. Rev Gaúch Enferm. 2008;3(29):423-30.

Grov EK, Eklund ML. Reactions of primary caregivers of frail older people and people with cancer in the palliative phase living at home. J Adv Nurs. 2008;63(6):576–85.

Gysels M, Higginson IJ. Caring for a person in advanced illness and suffering from breathlessness at home: Threats and resources. Palliat Support Care. 2009;7(1):153-62.

Tang WR. Hospice family caregivers’ quality of life. J Clin Nurs. 2009;18(1):2563-72.

Jack B, O’brien M. Dying at home: community nurses’ views on the impact of informal carers on cancer patients’ place of death. Eur J Cancer Care. 2010;19(1):636-42.

Alptekin S, Gönüllü G, Yücel I, Yariş F. Characteristics and quality of life analysis of caregivers of cancer patients. Medic Oncology. 2010;27(3):607-17.

Sano T, Maeyama E, Kawa M, Shirai Y, Miyashita M, Kazuma K et al. Family caregiver’s experiences in caring for a patient with terminal cancer at home in Japan. Palliat Support Care. 2007;5(1):389–95.

Cowan MM. The lived experiences of the Sikh population of south east England when caring for a dying relative at home.Int J Palliat Nurs. 2014;20(4):179-86.

Mcgrath PAM, Joske D. Palliative care and hematological malignancy: a case study. Aust Health Rev. 2002;25(3):60-6.

Singer Y, Bachner YG, Shvartzman P, Carmel S. Home Death-The Caregivers Experiences. J Pain Symptom Manage. 2005;30(1):70-4.

Tang ST, Liu TW, Lai MS, McCorkle R. Discrepancy in the preferences of place of death between terminally ill cancer patients and their primary family caregivers in Taiwan. Soc Sci Med. 2005;61(1):1560–6.

Bahner Y, Rourke N, Davidov E, Carmel S. Mortality communication as a predictor of psychological distress among family caregivers of home hospice and hospital inpatients with terminal cancer. Aging Ment Health . 2009;13(1): 54–63.

Tsigaroppoulos T, Mazaris E, Chatzidarellis E, Skolarikos A, Varkarakis I, Deliveliotis C. Problems faced by relatives caring for cancer patients at home. Int J Nurs Pract. 2009;15(1):1–6.

Monterosso L, Kristjanson LJ, Philips MB. The supportive and palliative care needs of Australian families of children who die from câncer. Palliat Medic. 2009;23(1):526–36.

Sekelja N, Butow PN, Tattersall MH. Bereaved cancer carers’ experience of and preference for palliative care. Support Care Cancer. 2010;18(1):1219–28.

Hirano Y, Yamamoto-Mitani N, Ueno M, Takemori S, Kashiwagi M, Sato I et al. Home Care Nurses’ Provision of Support to Families of the Elderly at the End of Life. Qual Health Res. 2011;21(2):199-213.

Hanratty B, Addington-Hall J, Arthur A, Cooper L, Grande G, Payne S et al. What is different about living alone with cancer in older age? A qualitative study of experiences and preferences for care. BMC Fam Pract. 2013;14(1):14-22.

Nielsen LS, Angus JE, Gastaldo D, Howell D, Husain A. Maintaining distance from a necessary intrusion: A postcolonial perspective on dying at home for Chinese immigrants in Toronto, Canada. Eur J Oncol Nurs. 2013;17(5):649-56.

Deshields TL, Rihanek A, Potter P, Zhang Q, Kuhrik M, Kuhrik N et al. Psychosocial aspects of caregiving: perceptions of cancer patients and family caregivers. Support Care Cancer. 2012;20(1):349–56.

Papastavrou E, Charalambous A, Tsangari H. "How do informal caregivers of patients with cancer cope: A descriptive study of the coping strategies employed. Eur J Oncol Nurs. 2012;16(3):258-63.

Lee SF, O'Connor MM, Chapman Y, Hamilton V, Francis K. A very public death: dying of mesothelioma and asbestos-related lung cancer (M/ARLC) in the Latrobe Valley, Victoria, Australia. Rural Remote Health. 2009;9(3):1183-96.

Wennman-LarSsen A, Tishelman C. Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers. Scand J Caring Sci. 2002;16(1):240-7.

McLaughlin BC, Chambers H. Living and coping with Parkinson’s disease: Perceptions of informal carers. Palliat Medic. 2011;25(2):177–82.

Tibballs J, Henning R, Robertson CF, Massie J, Hochmann M, Carter B et al. A home respiratory support programme for children by parents and layperson carers. J Pediatr Child Health. 2010;46(1):57–62.

Melin-Johansonn C, Gunvor DO, Bertil A, Andella D. The meaning of quality of life: Narrations by patients with incurable cancer in palliative home care. Palliat Support Care. 2008;6(1):231–8.

Hirabayashi Y, Mitsunori M, Masako K, Keiko K, Kohsuke Y, Naoyuki O. Factors relating to terminally ill cancer patients' willingness to continue living at home during the early phase of home care after discharge from clinical cancer centers in Japan. Palliat Support Care. 2007;5(1):19-23.

Fluchel MN, Kirchhoff AC, Bodson J, Sweeney C, Edwards SL, Ding Q et al. Geography and the burden of care in pediatric cancers. Pediatr Blood Cancer. 2014;61(11):1918-24.

Milberg A, Strang P, Carlsson M, Börjesson S. Advanced Palliative Home Care: Next-of-Kin’s Perspective. J Palliat Med. 2003;6(5):163-70.

Sing D, Chaudoir SR, Escobar MC, Kelichman S. Stigma, burden, social support, and willingness to care among caregivers of PLWHA in home based care South Africa. AIDS Care. 2011;23(7):839–45.

Carvalho DP, Toso BRGO, Viera CS, Garanhani ML, Rodrigues RM, Ribeiro LFC. Ser cuidador e as implicações do cuidado na atenção domiciliar. Texto Contexto Enferm. 2015;24(2):450-8.

Silva KL, Silva YC, Lage EG, Paiva PA, Dias OV. Por que é melhor em casa? a percepção de usuários e cuidadores da atenção domiciliar. Cogitare Enferm. 2017;(22)4:e49660.

Rosa CGLSR, Oliveira SG, Velleda KL, Ribeiro BF. Meaning and Perceptions in Palliative Care: overview of patients on homecare. Rev Enferm UFPI. 2017;6(1):26-32.

Implicaciones de la atención de salud a domicilio en la dinámica familiar: revisión narrativa

Implications of home care in the family dynamics: narrative review

Resumen

Abstract

Bibliografía