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

Rojas, Mauricio Arias; García-Vivar, Cristina

doi:10.17533/udea.iee.v33n3a12

Cited by 17 publications

(13 citation statements)

References 47 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…A narrative review of patient and family caregivers’ transition experiences of palliative care from the hospital to home setting showed that they experienced a broad range of needs during the transition process, including communication and information needs, emotional support and social support for family caregivers, which are not always addressed by healthcare professionals. 4 The review indicated a need to further explore the experiences of patients and families, especially during the stage prior to the transfer from the hospital to the home.…”

Section: Introductionmentioning

confidence: 99%

Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study

et al. 2021

View full text Add to dashboard Cite

Background: Transitions between care settings (hospice, hospital and community) can be challenging for patients and family caregivers and are often an under-researched area of health care, including palliative care. Aim: To explore the experience of transitions between care settings for those receiving specialist palliative care. Design: Qualitative study using thematic analysis. Setting/participants: Semi-structured interviews were conducted with adult patients ( n = 15) and family caregivers ( n = 11) receiving specialist palliative care, who had undergone at least two transitions. Results: Four themes were identified. (1) Uncertainty about the new care setting. Most participants reported that lack of information about the new setting of care, and difficulties with access and availability of care in the new setting, added to feelings of uncertainty. (2) Biographical disruption. The transition to the new setting often resulted in changes to sense of independence and identity, and maintaining normality was a way to cope with this. (3) Importance of continuity of care. Continuity of care had an impact on feelings of safety in the new setting and influenced decisions about the transition. (4) Need for emotional and practical support. Most participants expressed a greater need for emotional and practical support, when transitioning to a new setting. Conclusions: Findings provide insights into how clinicians might better negotiate transitions for these patients and family caregivers, as well as improve patient outcomes. The complexity and diversity of transition experiences, particularly among patients and families from different ethnicities and cultural backgrounds, need to be further explored in future research.

show abstract

Section: Introductionmentioning

confidence: 99%

Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study

et al. 2021

View full text Add to dashboard Cite

show abstract

“…Family carers provide the majority of care at home in the last year of life (Ward-Griffin and McKeever 2000) and are thus essential for supporting home death (Gomes and Higginson 2006). Carers' tasks include physical care of the patient, medication and symptom management, household and daily activities, and providing emotional support (Aoun et al 2013;Arias Rojas and Garcı ´a-Vivar 2015;Barker et al 2017;Harris et al 2018). Results showed that all health professionals felt Carer-Help was a useful tool to increase carers' preparedness for attending to physical and emotional care needs of the patient.…”

Section: Discussionmentioning

confidence: 99%

“…A life-limiting illness is defined as an illness where it is expected that death will be a direct consequence (Palliative Care Australia 2018b). Carers report the need for disease-specific information relating to diagnosis, prognosis and treatment (Aoun et al 2013;Arias Rojas and Garcı ´a-Vivar 2015), and information and support relating to patient care needs (e.g. assistance with symptom and medication management, dressing, showering, transport to and from appointments) (Aoun et al 2013), practical support with household tasks (e.g.…”

Section: Introductionmentioning

confidence: 99%

Evaluation of an online toolkit for carers of people with a life-limiting illness at the end-of-life: health professionals’ perspectives

Parker

Hudson

Tieman

et al. 2021

Aust. J. Primary Health

View full text Add to dashboard Cite

Carers of people with a life-limiting illness report unmet information, practical, and emotional support needs, and are often unaware of services available to help improve preparedness, wellbeing, and reduce strain. CarerHelp is the first e-health toolkit that focuses on the information and support needs of carers of people with a life-limiting illness at the end-of-life, using a pathway approach. This study investigated the usefulness of CarerHelp, from the perspective of health professionals who care for these people. Through a 10-min online survey, health professionals provided feedback about their user experience and perceived usefulness of the website. Their expert opinion was sought to ascertain whether CarerHelp could increase carers’ preparedness and confidence to support the person for whom they are caring and thereby improve carers’ own psychological wellbeing. Health professionals also evaluated whether CarerHelp adequately raised awareness of support services available. CarerHelp was perceived as a useful resource for increasing preparedness for the caring role, including physical tasks and emotional support. Health professionals reported that CarerHelp would increase carers’ knowledge of services, confidence to care and ability for self-care. Health professionals endorsed CarerHelp as a useful information source, guide for support, and would promote CarerHelp to clients and their families.

show abstract

“…The results of a review study show that family caregivers, during the transition of the palliative care of their patients from hospital to home, experience poor interaction on the part of the healthcare team and lack of coordination in the continuation of care at home, which adds to their stress and anxiety. 55 In a study, the researchers use a Multiple Sclerosis at Home Access model to provide a group of patients with full support and prevent the common complications of MS in their case. The key features of their plan include monthly visits at the patients' homes and the continuation of the caregiving process by professional caregivers.…”

Section: Discussionmentioning

confidence: 99%

<p>The Experiences of Multiple Sclerosis Patients’ Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study</p>

Tehranineshat¹,

Yektatalab²,

Momennasab³

et al. 2020

PPA

View full text Add to dashboard Cite

Background and Aim: Being diagnosed with multiple sclerosis is usually accompanied by emotional trauma for patients and their families. The chronic, progressive, and unpredictable nature of the disease spells the patients' long-term need for care from their families. As soon as a diagnosis is made, family caregivers are faced with many challenges. The present study aims to identify family caregivers' experiences at the first hospitalization of their patients. Materials and Methods: The present study is a work of qualitative research and uses the conventional content analysis approach. It lasted from July 2019 to March 2020. The subjects were selected via purposeful sampling. To collect data, the researchers conducted indepth, semi-structured interviews with 18 family caregivers of patients with multiple sclerosis. The collected data were analyzed using MAXQDA 2007. Results: Analysis of the data yielded three themes: peaceful environment, need for continuing full support, and religion-based coping strategies. Conclusion: The findings of the present study can be used to develop support programs that address family caregivers' problems and needs to assist them in accepting and coping with the conditions of their patients, thereby increasing the quality of care provided to patients with multiple sclerosis.

show abstract

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

Cited by 17 publications

References 47 publications

Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study

Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study

Evaluation of an online toolkit for carers of people with a life-limiting illness at the end-of-life: health professionals’ perspectives

<p>The Experiences of Multiple Sclerosis Patients’ Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study</p>

Contact Info

Product

Resources

About