The transition of palliative care from the hospital to the home: a narrative review of experiences of patients and family caretakers

Mauricio Arias Rojas, Cristina García-Vivar

Abstract


Objective. This work sought to identify, analyze, and synthesize the qualitative studies published on the experiences of patients and family caretakers during the transition of palliative care from the hospital to the home.

Methodology. A narrative review was conducted on the PubMed, Cochrane Central, ScienceDirect, Ovid Nursing, CINALH, Scielo, and Bireme databases, from 2000 to 2014.

Results. After the analysis and comparison of the data, the results were grouped into six themes: (1) the dyad and its knowledge regarding the diagnosis and prognosis; (2) emotions experienced by the family caretaker and the patient during discharge; (3) effective communication among those involved with the care; (4) education for the care of the person at home; (5) continuous support to the dyad at home, and (6) care overload: social support for the family caretaker.

Conclusion. Patients and relatives in palliative care experience a broad range of needs during the transition process from the hospital to the home, which are often not covered by healthcare professionals. This review evidences the need to research further on the experiences of these families, especially during the stage prior to the transfer to the domicile.

How to cite this article: Arias M, García-Vivar C. The transition of palliative care from the hospital to the home: a narrative review of experiences of patients and family caretakers. Invest Educ Enferm. 2015; 33(3):


References


(1) Woldwide Palliative Care Alliance, World Health Organization. Global atlas of palliative care at the end of life. WHO: Ginebra; enero 2014.

(2) Khan SA, Gomes B, Higginson IJ. End-of-life care--what do cancer patients want? Nat Rev Clin Oncol. 2014; 11(2):100-8.

(3) Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a review. BMC Palliat Care. 2013; 12(7):1-13.

(4) Gomes B, Higginson IJ, Calanzani N, Cohen J, Deliens L, Daveson BA, et al. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol. 2012; 23(8):2006-15.

(5) Yang L, Sakamoto N, Marui E. A study of home deaths in Japan from 1951 to 2002. BMC Palliat Care. 2006; 5:2-9.

(6) Shepperd S, Lannin NA, Clemson LM, McCluskey A, Cameron ID, Barras SL. Discharge planning from hospital to home. Cochrane Database Syst Rev. 2004;(1):CD000313.

(7) Pieper B, Sieggreen M, Freeland B, Kulwicki P, Frattaroli M, et al. Discharge information needs of patients after surgery. J Wound Ostomy Continence Nurs. 2006; 33(3): 281–9.

(8) Pastrana T, De Lima L, Pons JJ, Centeno C. Atlas de Cuidados Paliativos de Latinoamérica. Edición cartográfica 2013. Houston: IAHPC Press; 2013.

(9) Sociedad Española de Cuidados Paliativos. Libro blanco sobre normas de calidad y estándares de cuidados paliativos de la Sociedad Europea de Cuidados Paliativos. Madrid: Síosí Punto Grafico; 2012.

(10) Barrera OL, Blanco CL, Figueroa IP, Pinto AN, Sánchez HB. Habilidad de cuidadores familiares de personas con enfermedad crónica Mirada internacional. Aquichan. 2006; 6(1):22-33.

(11) Streid J, Harding R, Agupio G, Dinat N, Downing J, Gwyther L, et al. Stressors and Resources of Caregivers of Patients With Incurable Progressive Illness in Sub-Saharan Africa. Qual Health Res. 2014; 24(3):317-28.

(12) Kulkarni P, Kulkarni P, Ghooi R, Bhatwadekar M, Thatte N, Anavkar V. Stress among Care Givers: The Impact of Nursing a Relative with Cancer. Indian J Palliat Care 2014; 20(1):31-39.

(13) Meleis AI, Sawyer, L, Im E, Schumacher K, Messias D. Experiencing transitions: an emerging middle range theory. Adv Nurs Sci. 2000; 23(1):12-28.

(14) Dixon-Woods M, Agarwal S, Jones D, Young B, Sutton A. Synthesising qualitative and quantitative evidence: a review of possible methods. J Health Serv Res Policy. 2005; 10(1):45–53.

(15) Hasson F, Kernohan WG, McLaughlin M, Waldron M, McLaughlin D, Chambers H, et al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliat Med. 2010; 24(7):731-6.

(16) Murray SA, 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):929-32.

(17) Rabow MW, Hauser JM, Adams J. Perspectives on care at the close of life. Supporting family caregivers at the end of life: "they don't know what they don't know". JAMA. 2004 28;291(4):483-491.

(18) Benzar E, Hansen L, Kneitel AW, Fromme EK. Discharge planning for palliative care patients: a qualitative analysis. J Palliat Med. 2011; 14(1):65-9.

(19) McIlfatrick S. Assessing palliative care needs: views of patients, informal carers and healthcare professionals. J Adv Nurs. 2007; 57(1):77-86.

(20) Hayle C, Coventry PA, Gomm S, Caress A. Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: A qualitative study. Palliat Med. 2013; 27(9):861-8.

(21) Hanratty B, Holmes L, Lowson E, Grande G, Addington-Hall J, Payne S, et al. Older adults' experiences of transitions between care settings at the end of life in England: a qualitative interview study. J Pain Symptom Manage. 2012; 44(1):74-83.

(22) 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.

(23) Holley APH, Gorawara-Bhat R, Dale W, Hemmerich J, Cox-Hayley D. Palliative Access Through Care at Home: Experiences with an Urban, Geriatric Home Palliative Care Program. J Am Geriatr Soc. 2009; 57(10):1925-31.

(24) Moore G, Collins A, Brand C, Gold M, Lethborg C, Murphy M, et al. Palliative and supportive care needs of patients with high-grade glioma and their carers: a systematic review of qualitative literature. Patient Educ Couns. 2013; 91(2):141-53.

(25) Grimmer KA, Moss JR, Gill TK. Discharge planning quality from the carer perspective. Qual Life Res. 2000; 9(9):1005-13.

(26) Strachan PH, Ross H, Rocker GM, Dodek PM, Heyland DK, Canadian Researchers at the End of Life Network (CARENET). Mind the gap: Opportunities for improving end-of-life care for patients with advanced heart failure. Can J Cardiol. 2009; 25(11):635-40.

(27) Tallman K, Greenwald R, Reidenouer A, Pantel L. Living with advanced illness: longitudinal study of patient, family, and caregiver needs. Perm J. 2012; 16(3):28-35.

(28) Stajduhar KI, Funk L, Outcalt L. Family caregiver learning—how family caregivers learn to provide care at the end of life: A qualitative secondary analysis of four datasets. Palliat Med. 2013; 27(7):657-64.

(29) Waldrop DP, Kramer BJ, Skretny JA, Milch RA, Finn W. Final transitions: Family caregiving at the end of life. J Palliat Med. 2005; 8:623–38.

(30) Strang VR, Koop P, Peden J. The experience of respite during home-based family caregiving for persons with advanced cancer. J Palliat Care. 2002; 18:97–104.

(31) Stajduhar KI, Martin WL, Barwich D, Fyles G. Factors influencing family caregivers’ ability to cope with providing end-of-life cancer care at home. Cancer Nurs. 2008; 31:77–85.

(32) Stoltz P, Willman A, Udén G. The meaning of support as narrated by family carers who care for a senior relative at home. Qual Health Res. 2006; 16:594–610.

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

(34) Farber SJ, Egnew TR, Herman-Bertsch JL, Taylor TR, Guldin GE. Issues in end-of-life care: patient, caregiver, and clinician perceptions. J Palliat Med. 2003; 6:19–31.

(35) Grbich CF, Maddocks I, Parker D. Family caregivers, their needs and home-based palliative cancer services. J Fam Stud. 2001; 7:171–88.

(36) Jo S, Brazil K, Lohfeld L, Willison K. Caregiving at the end of life: perspectives from spousal caregivers and care recipients. Palliat Support Care. 2007; 5:11–7.

(37) Aoun SM, Kristjanson L, Hudson P, Currow DC. The experience of supporting a dying relative: reflections of caregivers. Progress Palliat Care. 2005; 13:319–25.

(38) Harding R, Selman L, Beynon T, et al. Meeting the communication and information needs of chronic heart failure patients. J Pain Symptom Manage. 2008; 36:149–56.

(39) Cherlin E, Fried T, Prigerson HG, et al. Communication between physicians and family caregivers about care at the end of life: When do discussions occur and what is said? J Palliat Med. 2005; 8:1176–85.

(40) Mangan PA, Taylor KL, Yabroff KR, Fleming DA, Ingham JM. Caregiving near the end of life: Unmet needs and potential solutions. Palliat Support Care. 2003; 1:247–59.

(41) Jarrett NJ, Payne SA, Wiles RA. Terminally ill patients’ and lay-carers’ perceptions and experiences of community-based services. J Adv Nurs. 1999; 29:476–83.

(42) Boyd KJ, Murray SA, Kendall M, et al. Living with advanced heart failure: a prospective, community based study of patients and their carers. Eur J Heart Fail. 2004; 6:585–91.

(43) Dawson S, Kristjanson LJ. Mapping the journey: family carers’ perceptions of issues related to end-stage care of individuals with Muscular Dystrophy or Motor Neurone Disease. J Palliat Care. 2003; 19:36–42.

(44) Exley C, Tyrer F. Bereaved carers’ views of a hospice at home service. Int J Palliat Nurs. 2005; 11:242–46.

(45) Mok E, Chan F, Chan V, Yeung E. Perception of empowerment by family caregivers of patients with a terminal illness in Hong Kong. Int J Palliat Nurs. 2002; 8:137–45.

(46) Zhou M, Holden L, Bedard G, Zeng L, Lam H, Chu D, et al. The utilization of telephone follow-up in the advanced cancer population: a review of the literature. J Comp Eff Res. 2012; 1(6):509-17.

(47) Goldenheim A, Oates D, Parker V, Russell M, Winter M, Silliman RA. Rehospitalization of older adults discharged to home hospice care. J Palliat Med. 2014; 17(7):841-4.

(48) Hennemann-Krause L, Lopes AJ, Araujo JA, Petersen EM, Nunes RA. The assessment of telemedicine to support outpatient palliative care in advanced cancer. Palliat Support Care. 2014; 27:1-6.

(49) Riolfi M, Buja A, Zanardo C, Marangon CF, Manno P, Baldo V. Effectiveness of palliative home-care services in reducing hospital admissions and determinants of hospitalization for terminally ill patients followed up by a palliative home-care team: a retrospective cohort study. Palliat Med. 2014; 28(5):403-11.

(50) Stajduhar KI, Davies B. Palliative care at home: Reflections on HIV/AIDS family caregiving experiences. J Palliat Care. 1998; 14:14–22.


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