Paliative care and the family
Keywords:
Hospice care, Family nursing , FamilyAbstract
A systematic and coordínated bibliographic review was done on the theme ”palliative
care and the family," identifying which aspects are being developed by researchers. The articles were analyzed according to the topics: reading comprehension, search for the main idea, devising of records, bibliographic review and scientific documentation. The selected material was submitted to the following stages of thematic analysis: preanalysis, examination of the material treating the results obtained and interpreting them and emphasis of research objectives. A total of 71 articles from national and international journals were analyzed. Most were in English and originated in the United States of America. Most of the article presented a qualitative methodological emphasis. The number of publications in the last five years increased: 43 articles have been published after 2002, Some articles corer the family caregiver and other articles cover families that have a family member dedicated to providing palliative care. Thematic analysis pointed out the objective of the studies which were then grouped into thematic categories such as: influence that palliative care has on family and/or family caregivers; caring experience and death at home; concerns and feelings experienced at the end of life; and health professional-family-patient interaction in palliaüve care. When dealing with pallíatíve care. family envolvement is essential and the family needs to be considered a unit. There is much family involvement especially in cases of diseases that cannot be cured. Nurses should work to support the patient and family in order to minimize fears and anxieties and allow their active participation.
Downloads
References
Melo AGC' Os cuidados paliativos no Brasil. Mundo Saúde, 2003; 27(1):58-62.
Word Health Organization. Cancer pain relief and palliative care in children. Technical report series. Genebra: WHO; 1998.
Maciel MGS. Morte no domicílio: experiência da equipe de cuidados paliativos do Hospital do Servidor
Público Estadual de São Paulo. Prat Hosp. 2004; 36(4):77-81.
Ferreira NMLA, Chico E, Hayhashi VD. Buscando compreender a experiêncIa do doente com câncer, Rev Ciên Méd (Campinas). 2005; 14(3):239-48.
Salomon DV. Como fazer uma monografia: elementos de metodologia do trabalho científico. Belo Horizonte: Interlivros; 1973.
Bardin L. Análise de conteúdo. Lisboa: Edições 70; 2000.
Taylor EJ. Spiritual needs of patients with cancer and family caregivers. Cancer Nurs. 2003; 26(4):260-6.
Proot FM, Abu-Saad HH, Crebolder HFJM, Goldsteen M, Luker KA, Widdershoven GAM. Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scand J Caring Sci. 2003; 17(2):113-21.
Marques SM, Ferraz AE. A vivência do cuidado domiciliar durante o processo de morrer: a perspectiva de familiares cuidadores. Rev Min Enferm 2004; 8(1 ): 183-928.
Hamilton J, Butler L, Wagenaar H, Sveinson T, Ward KA, McLean L, et al, The impact and management of cancer-related fatigue on patients and families' Can Oncol Nurs J. 2001 ; 11 (4):192-8.
Bajtmam S. The impact on the family of terminal restlessness and its management. Palliat Med. 2003; 17(5):454-60.
Hudson PL, Aranda S, Kristjanson LJ. Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals. J Palliat Med. 2004; 7(1):19-25.
Wennman-Larsen 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(3):240-7.
Carmen WH, Chan RN, Chang AM. Managing caregiver tasks among family caregivers of cancer patients in Hong Kong. J Adv Nurs. 1999; 29(2):484-9.
Hechter S, Poggenpoei M, Myburgh C. Life stories of families with a terminally ill child. Curations. 2001; 24(2): 54-61.
Mu PF, Ma FC, Hwang B, Chao YM. Families of children with cancer: the impact on anxiety experienced by fathers. Cancer Nurs. 2002; 25(1):66-73.
Bielemann, VLM. A família cuidando do ser humano com câncer e sentindo a experiência. Rev Bras Enferrn. 2003; 56(2):133-7,
Meyers JL, Gray LN. The relationships between family primary caregiver characteristics and satisfaction with hospice care, quality of life. and burden. Oncol Nurs Forum. 2001 ; 28(1):73-82.
Glaichen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol. 2004; 2(2):145-55.
Schreiber-Gollwitzer BM, Schröder HM, Griessmeier B, Lilienthal S. Quantitative and qualitative evaluation of psychosocial care for patients in pediatric oncology and hematology- a multicenter study on behalf of the PSAPOH. Klin Pediatr. 2003; 215(3):171-76.
Northouse LL, Walker J, Schafenacker A, Mood D, Mellon S, Galvin E, et al. A family-based program of care for women with recurrent breast cancer and their family members. Oncol Nurs Forum. 2002; 29(10):1411-9.
Novak B, Kolcaba K, Steiner R, Dowd T. Measuring comfort in caregivers and patients during late endof-life care. Am J Hosp Patliat Care. 2001 ; 18(3):170-80.
Madison JL, Wilkie, DJ. Family members perceptions of cancer pain- comparisons with patient sensory report and by patient psychologic status. Nurs Clin North Am. 1995; 30(4):625-7.
Pérez SA, Chávez PF, Lanza, CC. Cuidados paliativos domiciliarios en pacientes con cáncer cervicouterino en etapas avanzadas. Rev Inst Nac Cancerol (México). 2002; 46(1): 10-6.
Sekiya Y, Naito A, Maeda M. Terminal care of the cancer patient at home- patient and family spending the last moments together. Gan To Kagaku Ryoho. 1998; 25 (4):684-8.
Mann S, Galler D, Williams P, Frost P Caring for patients and families at the end of life: withdrawal of intensive care in the patient’s home. N Z Med J. 2004; 117(1 196): U935.
Kreitzschitz K, Macpherson CC. End of life care. Perspectives from families and caregivers. West Indian Med J. 2003; 52(4):311-6.
Thomas C, Morris SM, Clark D, Place of death preferences among cancer patients and their carers. Soc Sci Med. 2004; 58(12):2431-44.
Teno JM, Clarridge BR, CaseyJ, Welch LC, Weth T, et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004; 291 (1):88-93.
Dangel T, Fowler-Kerry S, Karwacki M, Bereda J. An evaluation of a home palliative care programme for children. Am Child Health. 2002; 6(2):101-4
Araújo MMT, Silva MJP. Nursing the dying: essential elements in the care of terminally ill patients. Int Nurs Rev. 2004; 51 (3):149.
Grande GE, Farquhar MC, Barclay SIG, Todd CJ Caregiver bereavement outcome: relationship with hospice at home, satisfaction with care, and home death. J Palliat Care. 2004; 20(2):69-77.
Tanaka A, Teruyo I, Kaneyasu H, Petrini MA. Thoughts and feelings of in-patients with advanced terminal cancer: Implications for terminal care improvement Nurs Health Sci. 1999; 1 (3):189-93.
Morita T, Kawa M, Honke Y, Kohara H, Maeyama E, kizawa Y, et al. Existential concerns of terminally ill cancer patients receiving specialized palliative care in Japan. Support Care Cancer. 2004; 12(2):137-40.
Murray AS, Boyd K, Kendall M, Worth A, Benton TF, Clausen H. Dying of lung cancer or cardiac failure prospective qualitative interview study of patients and their careers in the community. BMJ. 2002; 325(7370):915-6.
Hickman SE, Tilden VP, Tolle SW. Family perceptions of worry, symptoms, and suffering in the dying. J Palliat Care. 2004; 20(1):20-7.
Mehta A, Ezer H. My love is hurting: the meaning spouses attribute to their loved ones’ pain during palliative care. J Palliat Care. 2003; 19(2):87-94.
Woodgate RL, Degner LF. Expectations and beliefs about children's cancer symptoms: perspectives of children with cancer and their families. Oncol Nurs Forum. 2003b; 30(3):479-91.
Lopes LF, Camargo B, Furrer AA. Aspecto da humanização no tratamento de crianças na fase terminal. Pediatric Mod. 1999; 35(11):897-901.
Marcelino SR, Radunz V, Erdmann. AL. Cuidado domiciliar: escolha ou falta de opção? Texto & Contexto Enferm. 2002; 9(3):9-21.
Gomes MBPP. Reflexões sobre o processo de terrninalidade: impacto da doença para o paciente Rev Hosp Univ. 1996; 22(2):36-51.
Benzein E, Johansson B, Saveman Bl. Families in home care- a resource or a burden? District nurses' beliefs J Ciin Nurs. 2004; 13(7):867-75.
Tang ST. Determinants of hospice home care use among terrninally iII cancer patients. Nurs Res. 2003; 52(4):217-25.
Baer WM, Hanson LC. Families’ perception of the added value of hospice in the nursing home, J Am Geriatr Soc. 2000; 48(8):879-82.
Hunt R, McCaul K, A population-based study of the coverage of cancer patients by hospice services. Palliat Med. 1996; 10(1):5-12.
Eriksson E. Caring for cancer patients: relatives’ assessments of received care. Eur J Cancer Care. 2001; 10(1):48.
Flanagan J. Clinically effective cancer care: working with families. Eur J Oncol Nurs. 2001 ; 5(3):174-9.
Kuuppelomaki M, Spiritual support for families of patients with cancer: a pilot study of nursing staff assessments. Cancer Nurs. 2002; 25(3):209-18.
Pickett M, Barg FK, Lynch MP. Development of a homebased family caregiver cancer education program Hosp J. 2001 ; 1 5(4):19-40
Strang VR, Koop PM. Factors which influence coping home-based family caregiving of persons with advanced cancer. J Palliat Care. 2003, 19(2): 107-114.
Seymour J, Ingleton C, Payne S, et al. Specialist palliative care: patients experiences. J Adv Nurs. 2003; 44(1):24-33.
