The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care

2020 ◽  
Vol 37 (10) ◽  
pp. 816-822 ◽  
Author(s):  
Meng-Ping Wu ◽  
Sheng-Jean Huang ◽  
Lee-Ing Tsao
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Family Members ◽  
Assessment Tools ◽  
Theory Approach ◽  
Home Based ◽  
Number Of Patients ◽  
Primary Family

Background: An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to receive care from family members. However, few studies have been conducted on the subjective perception and value of caregivers for home-based palliative care (HBPC). Objective: To identify common themes and topics of primary family caregivers’ lived experiences with HBPC when taking care of terminally ill family members. Methods: We conducted audio-recorded transcripts of one-on-one in-depth interviews of primary family caregivers of HBPC. Through a purposive sampling method, the participants were all interviewed; these interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: A total of 22 primary family caregivers participated in the study. “Wholeheartedly accompanying one’s family to the end of life at home” was the core category. Six main themes describing caregivers’ experiences emerged from the interviews: (1) learning the basic skills of end-of-life home care, (2) arranging the sharing and rotation of care, (3) preparing for upcoming deaths and funerals, (4) negotiating the cultural and ethical issues of end-of-life home care, (5) ensuring a comfortable life with basic life support, and (6) maintaining care characterized by concern, perseverance, and patience. Conclusions: Primary family caregivers of HBPC need support and must learn home care skills by means of the holistic approach. It is crucial to establish assessment tools for caregivers’ preparedness for HBPC, including biopsychosocial and cultural considerations.

scholarly journals Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Ubolrat Piamjariyakul ◽  
Trisha Petitte ◽  
Angel Smothers ◽  
Sijin Wen ◽  
Elizabeth Morrissey ◽  
...  
Keyword(s):  
Heart Failure ◽  
Clinical Trial ◽  
Palliative Care ◽  
Randomized Controlled Trial ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Standard Care ◽  
Controlled Trial ◽  
Randomized Controlled

Abstract Background Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home. Methods This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state. Discussion The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process. Trial registration ClinicalTrials.gov NCT04153890, Registered on 4 November 2019

scholarly journals Development of the Readiness for Home-Based Palliative Care Scale (RHBPCS) for Primary Family Caregivers

Healthcare ◽  
2021 ◽  
Vol 9 (5) ◽  
pp. 608
Author(s):  
Meng-Ping Wu ◽  
Lee-Ing Tsao ◽  
Sheng-Jean Huang ◽  
Chieh-Yu Liu
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Goodness Of Fit ◽  
Item Analysis ◽  
Reliability And Validity ◽  
Good Reliability ◽  
Hospital System ◽  
Home Based ◽  
Confirmatory Factor ◽  
Primary Family

In Chinese or Eastern society, most end-of-life (EOL) patients still choose to die at home. However, primary family caregivers usually do not prepare themselves to face the death of patients. Therefore, a measurement of the readiness for home-based palliative care for primary family caregivers is needed. In this study, the readiness for home-based palliative care scale (RHBPCS) for primary family caregivers was developed to assess the readiness of primary family caregivers. This study recruited 103 participants from five branches of one municipal hospital system. The reliability and validity of the RHBPCS was evaluated using expert validity examination, confirmatory factor analysis (CFA), and item analysis. The results showed that the RHBPCS had strong goodness-of-fit and good reliability and validity. In summary, the RHBPCS is suggested for assessing the readiness for home-based palliative care of primary family caregivers.

A new measure of home care patients' dignity at the end of life: The Palliative Patients' Dignity Scale (PPDS)

2015 ◽  
Vol 14 (2) ◽  
pp. 99-108 ◽  
Author(s):  
David Rudilla ◽  
Amparo Oliver ◽  
Laura Galiana ◽  
Pilar Barreto
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Survey Design ◽  
Second Step ◽  
Care Family ◽  
Anxiety Depression ◽  
Palliative Patients

ABSTRACTObjective:This study aimed to develop a new and brief instrument to be employed in dignity measurement, one based on the perceptions of patients, relatives, and professionals about dignity.Method:Surveys of patients receiving palliative care, family caregivers, and palliative care professionals were first carried out (sample 1). In the second step, palliative care patients were surveyed with a pilot questionnaire (sample 2). Finally, a survey design was used to assess patients admitted into a home care unit (sample 3). Sample 1 included 78 subjects, including patients, family caregivers, and professionals. Some 20 additional palliative patients participated in sample 2. Finally, 70 more patients admitted to a home care unit participated were surveyed (sample 3). Together with the Palliative Patients' Dignity Scale (PPDS), our survey included other measures of dignity, anxiety, depression, resilient coping, quality of life, spirituality, and social support.Results:After analyzing data from steps 1 and 2, an eight-item questionnaire was presented for validation. The new scale showed appropriate factorial validity (χ2(19) = 21.43, p = 0.31, CFI = 0.99, GFI = 0.92, SRMR = 0.07, and RMSEA = 0.04), reliability (internal consistency estimations of 0.75 and higher), criterial validity (significant correlations with the hypothesized related variables), and a cutoff criteria of 50 on the overall scale.Significance of Results:The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

scholarly journals Feeling called to care: a qualitative interview study on normativity in family caregivers’ experiences in Dutch home settings in a palliative care context

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Maaike M. Haan ◽  
Gert Olthuis ◽  
Jelle L. P. van Gurp
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Family Caregiving ◽  
Family Members ◽  
Complex Nature ◽  
Theory Approach ◽  
Norms And Values ◽  
Qualitative Interview Study ◽  
The One ◽  
Bereaved Family

Abstract Background Family caregivers, such as partners or other family members, are highly important to people who desire to stay at home in the last phase of their life-limiting disease. Despite the much-investigated challenges of family caregiving for a patient from one’s direct social network, lots of caregivers persevere. To better understand why, we aimed to specify how normative elements – i.e. what is considered good or valuable – shape family caregivers’ experiences in Dutch home settings. Methods From September 2017 to February 2019, a total of 15 family caregivers, 13 bereaved family caregivers, and 9 patients participated in one-time in-depth interviews. The data were qualitatively analyzed following a grounded theory approach. Results Central to this study is the persistent feeling of being called to care. By whom, why, and to what? Family caregivers feel called by the patient, professionals entering normal life, family and friends, or by oneself; because of normative elements of love, duty, or family dynamics; to be constantly available, attentive to the patient while ignoring their own needs, and assertive in managing the caring situation. The prospect of death within the palliative care context intensifies these mechanisms with a sense of urgency. Conclusions Our analysis showed a difference between feeling called upon in the caring situation on the one hand, and how caregivers tend to respond to these calls on the other. Taking into account the inherent normative and complex nature of family caregiving, the pressing feeling of being called cannot – and perhaps should not – simply be resolved. Caring might be something families just find themselves in due to being related. Rather than in feeling called upon per se, the burden of care might lie in the seeming limitlessness to which people feel called, reinforced by (implicit) social expectations. Support, we argue, should enable caregivers to reflect on what norms and values guide their responses while acknowledging that caring, despite being burdensome, can be a highly important and rewarding part of the relationship between partners or family members.

scholarly journals How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Yvonne N. Becqué ◽  
Judith A. C. Rietjens ◽  
Agnes van der Heide ◽  
Erica Witkamp
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Assessment Tools ◽  
Structured Interviews ◽  
Care Family ◽  
The Individual ◽  
Education Support ◽  
Support Family ◽  
At Home

Abstract Background Family caregivers are crucial in providing end-of-life care at home. Without their care, it would be difficult for many patients to die at home. In addition to providing care, family caregivers also need support for themselves. Nurses could play an important role in supporting family caregivers, but little is known about if and how they do so. The aim of this study is to explore how nurses currently approach and support family caregivers in end-of-life home care and which factors influence their support of family caregivers. Methods Data were collected using semi-structured interviews with 14 nurses from nine home care organisations in the Netherlands, in 2018. Interviews were audio-taped, transcribed verbatim and analysed using a thematic analysis approach. Results We identified two underlying nursing perspectives on supporting family caregivers: an instrumental perspective (seeing family caregivers mostly as collaborative partners in care) and a relational perspective (seeing family caregivers as both providing and needing support). All the interviewed nurses stated that they pay attention to family caregivers’ needs. The activities mentioned most often were: identification of support needs, practical education, support in decision-making about the patient’s treatment, emotional support, and organising respite care, such as night care, to relieve the family caregiver. The provision of support is usually based on intuition and experience, rather than on a systematic approach. Besides, nurses reported different factors at the individual, organisational and societal levels that influenced their support of family caregivers, such as their knowledge and experience, the way in which care is organised, and laws and regulations. Conclusions Nurses tend to address family caregivers’ needs, but such care was affected by various factors at different levels. There is a risk that nursing support does not meet family caregivers’ needs. A more reflective approach is needed and evidence-based needs assessment tools may help nurses to systematically assess family caregivers’ needs and to provide appropriate support.

Much Ado About Fried Chicken: Abetting Aspiration or Respecting Autonomy?

2019 ◽  
Vol 28 (3) ◽  
pp. 1356-1362
Author(s):  
Laurence Tan Lean Chin ◽  
Yu Jun Lim ◽  
Wan Ling Choo
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Multidisciplinary Team ◽  
Biopsychosocial Model ◽  
Family Members ◽  
Clinical Decisions ◽  
Goals Of Care ◽  
Complex Needs ◽  
Aspiration Risk ◽  
Patient Centric

Purpose Palliative care is a philosophy of care that encompasses holistic, patient-centric care involving patients and their family members and loved ones. Palliative care patients often have complex needs. A common challenge in managing patients near their end of life is the complexity of navigating clinical decisions and finding achievable and realistic goals of care that are in line with the values and wishes of patients. This often results in differing opinions and conflicts within the multidisciplinary team. Conclusion This article describes a tool derived from the biopsychosocial model and the 4-quadrant ethical model. The authors describe the use of this tool in managing a patient who wishes to have fried chicken despite aspiration risk and how this tool was used to encourage discussions and reduce conflict and distress within the multidisciplinary team.

scholarly journals Shortening the Frommelt Attitude Toward the Care Of the Dying Scale (FATCOD-B): a Brief 9-Item Version for Medical Education and Practice

2021 ◽  
Author(s):  
Giorgia Molinengo ◽  
Barbara Loera ◽  
Marco Miniotti ◽  
Paolo Leombruni
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Rating Scale ◽  
Assessment Tools ◽  
Scale Model ◽  
Theory Approach ◽  
Fit Indices ◽  
Life Care ◽  
Care Training ◽  
Care Of The Dying

AbstractEnd-of-life care training has gaps in helping students to develop attitudes toward caring for the dying. Valid and reliable assessment tools are essential in building effective educational programmes. The Frommelt Attitude Toward the Care Of the Dying scale (FATCOD-B) is widely used to measure the level of comfort/discomfort in caring for the dying and to test the effectiveness of end-of-life care training. However, its psychometric properties have been questioned and different proposals for refinement and shortening have been put forward. The aim of this study is to get to a definitive reduction of the FATCOD-B through a valid and parsimonious synthesis of the previous attempts at scale revision. Data were gathered from a sample of 220 medical students. The item response theory approach was used in this study. Of the 14 items selected from two previous proposals for scale revision, 3 had a weak correlation with the whole scale and were deleted. The resulting 11-item version had good fit indices and withstood a more general and parsimonious specification (rating scale model). This solution was further shortened to 9 items by deleting 2 of 3 items at the same level of difficulty. The final 9-item version was invariant for gender, level of religiosity and amount of experience with dying persons, free from redundant items and able to scale and discriminate the respondents.

scholarly journals Effects of dignity therapy on palliative patients’ family members: A systematic review

2021 ◽  
pp. 1-10
Author(s):  
Leonor Grijó ◽  
Carolina Tojal ◽  
Francisca Rego
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Meaning In Life ◽  
Family Members ◽  
Cochrane Library ◽  
Publication Date ◽  
Dignity Therapy ◽  
Bibliographic Search ◽  
Palliative Patients

Abstract Objective Dignity therapy (DT) is a kind of psychotherapy that identifies the main concerns of end-of-life patients that affect their perception of dignity and helps them to find a new meaning in life. Most prior studies on DT analyze outcomes for palliative care patients. The aim of this systematic review is to explore the outcomes of DT in palliative care patients’ family members. Method In June 2020, a bibliographic search was performed using the terms “Dignity Therapy” and “Palliative Care” in the following databases: Cochrane library, TRIP database, PUBMED, Scopus, and Web of Knowledge. Of the 294 articles found, 8 met the selection criteria and were considered in the present study. No articles were excluded based on their publication date. Results Family members generally believe that DT helps them to better prepare the patient's end-of-life and overcome the bereavement phase. The legacy document was considered a source of comfort, and most would recommend DT to other people in their situation. DT is generally considered as important as any other aspect of the patient's treatment. Significance of results There is evidence of the benefits of DT for palliative patients’ family members. However, there are still few studies that evaluate these outcomes. The existing evidence is poorly generalized, and thus, further studies are needed to deeply explore the benefits of this therapy both for patients and their families.

scholarly journals Evidence on the economic value of end-of-life and palliative care interventions: a narrative review of reviews

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Xhyljeta Luta ◽  
Baptiste Ottino ◽  
Peter Hall ◽  
Joanna Bowden ◽  
Bee Wee ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cost Effectiveness ◽  
End Of Life ◽  
Resource Use ◽  
Economic Value ◽  
Healthcare Delivery ◽  
Dying Patients ◽  
Home Based ◽  
Population Type ◽  
Care Models

Abstract Background As the demand for palliative care increases, more information is needed on how efficient different types of palliative care models are for providing care to dying patients and their caregivers. Evidence on the economic value of treatments and interventions is key to informing resource allocation and ultimately improving the quality and efficiency of healthcare delivery. We assessed the available evidence on the economic value of palliative and end-of-life care interventions across various settings. Methods Reviews published between 2000 and 2019 were included. We included reviews that focused on cost-effectiveness, intervention costs and/or healthcare resource use. Two reviewers extracted data independently and in duplicate from the included studies. Data on the key characteristics of the studies were extracted, including the aim of the study, design, population, type of intervention and comparator, (cost-) effectiveness resource use, main findings and conclusions. Results A total of 43 reviews were included in the analysis. Overall, most evidence on cost-effectiveness relates to home-based interventions and suggests that they offer substantial savings to the health system, including a decrease in total healthcare costs, resource use and improvement in patient and caregivers’ outcomes. The evidence of interventions delivered across other settings was generally inconsistent. Conclusions Some palliative care models may contribute to dual improvement in quality of care via lower rates of aggressive medicalization in the last phase of life accompanied by a reduction in costs. Hospital-based palliative care interventions may improve patient outcomes, healthcare utilization and costs. There is a need for greater consistency in reporting outcome measures, the informal costs of caring, and costs associated with hospice.

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