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

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.

[1]  A. Lopes,et al.  The assessment of telemedicine to support outpatient palliative care in advanced cancer , 2014, Palliative and Supportive Care.

[2]  GoldenheimAnna,et al.  Rehospitalization of Older Adults Discharged to Home Hospice Care , 2014 .

[3]  A. Buja,et al.  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 , 2014, Palliative medicine.

[4]  I. Higginson,et al.  Stressors and Resources of Caregivers of Patients With Incurable Progressive Illness in Sub-Saharan Africa , 2014, Qualitative health research.

[5]  I. Higginson,et al.  End-of-life care—what do cancer patients want? , 2014, Nature Reviews Clinical Oncology.

[6]  K. Tallman,et al.  Living with advanced illness: longitudinal study of patient, family, and caregiver needs. , 2013, The Permanente journal.

[7]  Kelli I. Stajduhar,et al.  Family caregiver learning—how family caregivers learn to provide care at the end of life:  A qualitative secondary analysis of four datasets , 2013, Palliative medicine.

[8]  P. Coventry,et al.  Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: A qualitative study , 2013, Palliative medicine.

[9]  C. Brand,et al.  Palliative and supportive care needs of patients with high-grade glioma and their carers: a systematic review of qualitative literature. , 2013, Patient education and counseling.

[10]  I. Higginson,et al.  Heterogeneity and changes in preferences for dying at home: a systematic review , 2013, BMC Palliative Care.

[11]  H. Lam,et al.  The utilization of telephone follow-up in the advanced cancer population: a review of the literature. , 2012, Journal of comparative effectiveness research.

[12]  D. Haugen,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. , 2012, Annals of oncology : official journal of the European Society for Medical Oncology.

[13]  B. Hanratty,et al.  Older adults' experiences of transitions between care settings at the end of life in England: a qualitative interview study. , 2012, Journal of pain and symptom management.

[14]  E. Fromme,et al.  Discharge planning for palliative care patients: a qualitative analysis. , 2011, Journal of palliative medicine.

[15]  W. Kernohan,et al.  An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease , 2010, Palliative medicine.

[16]  D. Heyland,et al.  Mind the gap: Opportunities for improving end-of-life care for patients with advanced heart failure. , 2009, The Canadian journal of cardiology.

[17]  William Dale,et al.  Palliative Access Through Care at Home: Experiences with an Urban, Geriatric Home Palliative Care Program , 2009, Journal of the American Geriatrics Society.

[18]  Richard Harding,et al.  Meeting the communication and information needs of chronic heart failure patients. , 2008, Journal of pain and symptom management.

[19]  K. Stajduhar,et al.  Factors Influencing Family Caregivers' Ability to Cope With Providing End-of-Life Cancer Care at Home , 2008, Cancer nursing.

[20]  K. Brazil,et al.  Caregiving at the end of life: Perspectives from spousal caregivers and care recipients , 2007, Palliative and Supportive Care.

[21]  Lucy Barrera Ortiz,et al.  Habilidad de cuidadores familiares de personas con enfermedad crónica. Mirada internacional , 2006 .

[22]  G. Udén,et al.  The Meaning of Support as Narrated by Family Carers Who Care for a Senior Relative at Home , 2006, Qualitative health research.

[23]  B. Pieper,et al.  Discharge information needs of patients after surgery. , 2006, Journal of wound, ostomy, and continence nursing : official publication of The Wound, Ostomy and Continence Nurses Society.

[24]  N. Sakamoto,et al.  A study of home deaths in Japan from 1951 to 2002 , 2006, BMC palliative care.

[25]  H. Prigerson,et al.  Communication between physicians and family caregivers about care at the end of life: when do discussions occur and what is said? , 2005, Journal of palliative medicine.

[26]  D. Currow,et al.  The experience of supporting a dying relative: reflections of caregivers , 2005 .

[27]  D. Waldrop,et al.  Final transitions: family caregiving at the end of life. , 2005, Journal of palliative medicine.

[28]  F. Tyrer,et al.  Bereaved carers' views of a hospice at home service. , 2005, International journal of palliative nursing.

[29]  David R. Jones,et al.  Synthesising qualitative and quantitative evidence: A review of possible methods , 2005 .

[30]  A. Milberg,et al.  Exploring comprehensibility and manageability in palliative home care: An interview study of dying cancer patients' informal carers , 2004, Psycho-oncology.

[31]  Allison Worth,et al.  Living with advanced heart failure: a prospective, community based study of patients and their carers , 2004, European journal of heart failure.

[32]  Joshua Hauser,et al.  Supporting family caregivers at the end of life: "they don't know what they don't know". , 2004, JAMA.

[33]  David A. Fleming,et al.  Caregiving near the end of life: Unmet needs and potential solutions , 2003, Palliative & Supportive Care.

[34]  L. Kristjanson,et al.  Mapping the Journey: Family Carers’ Perceptions of Issues Related to End-Stage Care of Individuals with Muscular Dystrophy or Motor Neurone Disease , 2003, Journal of palliative care.

[35]  T. R. Taylor,et al.  Issues in end-of-life care: patient, caregiver, and clinician perceptions. , 2003, Journal of palliative medicine.

[36]  Scott A Murray,et al.  Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community , 2002, BMJ : British Medical Journal.

[37]  C. Tishelman,et al.  Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers. , 2002, Scandinavian journal of caring sciences.

[38]  P. Koop,et al.  The Experience of Respite during Home-Based Family Caregiving for Persons with Advanced Cancer , 2002, Journal of palliative care.

[39]  E. Yeung,et al.  Perception of empowerment by family caregivers of patients with a terminal illness in Hong Kong. , 2002, International journal of palliative nursing.

[40]  D. Parker,et al.  Family Caregivers, Their Needs, and Home-based Palliative Cancer Services , 2001 .

[41]  Eun-Ok Im,et al.  Experiencing Transitions: An Emerging Middle-Range Theory , 2000, ANS. Advances in nursing science.

[42]  S. Payne,et al.  Terminally ill patients' and lay-carers' perceptions and experiences of community-based services. , 1999, Journal of advanced nursing.

[43]  K. Stajduhar,et al.  Palliative Care at Home: Reflections on HIV/AIDS Family Caregiving Experiences , 1998, Journal of palliative care.

[44]  R. Ghooi,et al.  Stress among Care Givers: The Impact of Nursing a Relative with Cancer , 2014, Indian journal of palliative care.

[45]  N. Lannin,et al.  Discharge planning from hospital to home (Review) , 2013 .

[46]  L. D. Lima,et al.  Atlas de Cuidados Paliativos en Latinoamérica. Edición Cartográfica 2013 , 2013 .

[47]  Sonja McIlfatrick,et al.  Assessing palliative care needs: views of patients, informal carers and healthcare professionals. , 2007, Journal of advanced nursing.

[48]  K. Grimmer,et al.  Discharge Planning Quality from the Carer Perspective , 2004, Quality of Life Research.

[49]  Joshua Hauser,et al.  ON CARE AT THE CLOSE OF LIFE Supporting Family Caregivers at the End of Life “ They Don ’ t Know What They Don ’ t Know ” , 2004 .

[50]  S Shepperd,et al.  Discharge planning from hospital to home. , 2000, The Cochrane database of systematic reviews.