Evaluation of a psycho-educational group programme for family caregivers in home-based palliative care

2008 ◽  
Vol 22 (3) ◽  
pp. 270-280 ◽  
Author(s):  
P Hudson ◽  
K Quinn ◽  
L Kristjanson ◽  
T Thomas ◽  
M Braithwaite ◽  
...  
2020 ◽  
pp. 026921632095110
Author(s):  
Yakubu Salifu ◽  
Kathryn Almack ◽  
Glenys Caswell

Background: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. Aim: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. Design: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points. Participants: Men living with advanced prostate cancer ( n = 23), family caregivers ( n = 23), healthcare professionals ( n = 12). Findings: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care. Conclusion: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Ri Yin Tay ◽  
Rozenne W. K. Choo ◽  
Wah Ying Ong ◽  
Allyn Y. M. Hum

Abstract Background Meeting patients’ preferences for place of care at the end-of-life is an indicator of quality palliative care. Understanding the key elements required for terminal care within an integrated model may inform policy and practice, and consequently increase the likelihood of meeting patients’ preferences. Hence, this study aimed to identify factors associated with the final place of care in patients with advanced cancer receiving integrated, home-based palliative care. Methods This retrospective cohort study included deceased adult patients with advanced cancer who were enrolled in the home-based palliative care service between January 2016 and December 2018. Patients with < 2 weeks’ enrollment in the home-based service, or ≤ 1-week duration at the final place of care, were excluded. The following information were retrieved from patients’ electronic medical records: patients’ and their families’ characteristics, care preferences, healthcare utilization, functional status (measured by the Palliative Performance Scale (PPSv2)), and symptom severity (measured by the Edmonton Symptom Assessment System). Multivariate logistic regression was employed to identify independent predictors of the final place of care. Kappa value was calculated to estimate the concordance between actual and preferred place of death. Results A total of 359 patients were included in the study. Home was the most common (58.2%) final place of care, followed by inpatient hospice (23.7%), and hospital (16.7%). Patients who were single or divorced (OR: 5.5; 95% CI: 1.1–27.8), or had older family caregivers (OR: 3.1; 95% CI: 1.1–8.8), PPSv2 score ≥ 40% (OR: 9.1; 95% CI: 3.3–24.8), pain score ≥ 2 (OR: 3.6; 95% CI: 1.3–9.8), and non-home death preference (OR: 23.8; 95% CI: 5.4–105.1), were more likely to receive terminal care in the inpatient hospice. Patients who were male (OR: 3.2; 95% CI: 1.0–9.9), or had PPSv2 score ≥ 40% (OR: 8.6; 95% CI: 2.9–26.0), pain score ≥ 2 (OR: 3.5; 95% CI: 1.2–10.3), and non-home death preference (OR: 9.8; 95% CI: 2.1–46.3), were more likely to be hospitalized. Goal-concordance was fair (72.6%, kappa = 0.39). Conclusions Higher functional status, greater pain intensity, and non-home death preference predicted institutionalization as the final place of care. Additionally, single or divorced patients with older family caregivers were more likely to receive terminal care in the inpatient hospice, while males were more likely to be hospitalized. Despite being part of an integrated care model, goal-concordance was sub-optimal. More comprehensive community networks and resources, enhanced pain control, and personalized care planning discussions, are recommended to better meet patients’ preferences for their final place of care. Future research could similarly examine factors associated with the final place of care in patients with advanced non-cancer conditions.


Healthcare ◽  
2021 ◽  
Vol 9 (5) ◽  
pp. 608
Author(s):  
Meng-Ping Wu ◽  
Lee-Ing Tsao ◽  
Sheng-Jean Huang ◽  
Chieh-Yu Liu

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.


2020 ◽  
Vol 37 (10) ◽  
pp. 816-822 ◽  
Author(s):  
Meng-Ping Wu ◽  
Sheng-Jean Huang ◽  
Lee-Ing Tsao

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.


2021 ◽  
Author(s):  
RiYin Tay ◽  
Rozenne WK Choo ◽  
WahYing Ong ◽  
Allyn YM Hum

Abstract Background Meeting patients' preferences for place of care at the end-of-life is an indicator of quality palliative care. Understanding the elements required for terminal care within an integrated model may inform policy and practice to increase the likelihood of meeting preferences. Hence, this study aims to identify factors associated with the final place of care of advanced cancer patients receiving integrated home-based palliative care.MethodsThis retrospective cohort study included deceased adult advanced cancer patients enrolled into the home-based service from January 2016-December 2018. Patients with <2 weeks enrolment or ≤1-week duration at the final place of care were excluded. Independent variables included patients’ and families’ characteristics, care preferences, healthcare utilization, functional status and symptom severity assessed using the Palliative Performance Scale (PPSv2) and the Edmonton Symptom Assessment System respectively. The dependent variable was the final place of care. Multivariate logistic regression identified independent determinants and Kappa value evaluated goal-concordance.ResultsOf the 359 eligible patients, home was the most common final place of care (58.2%), followed by inpatient hospice (23.7%) and hospital (16.7%). Single or divorced patients with older family caregivers had a 5.5 (95% CI:1.1-27.8) and 3.1 (95% CI:1.1-8.8) odds respectively of receiving terminal care in inpatient hospice. A PPSv2≥40% and pain score ≥2 increased the odds by 9.1 (95% CI:3.3-24.8) and 3.6 (95% CI:1.3-9.8) times respectively, while non-home death preference increased it by 23.8 (95% CI:5.4-105.1) times. In predicting hospitalization, males had a 3.2 (95% CI:1.0-9.9) odds while a PPSv2≥40% and pain score ≥2 increased the odds by 8.6 (95% CI:2.9-26.0) and 3.5 (95% CI:1.2-10.3) times respectively. Non-home death preference increased it by 9.8 (95% CI:2.1-46.3) times, all p<0.05. Goal-concordance was fair (72.6%, kappa=0.39).ConclusionsHigher functional status, greater pain intensity and non-home death preference predicted institutionalization as the final place of care. Additionally, single or divorced patients with older family caregivers were more likely to receive terminal care in inpatient hospice while males were more likely to be hospitalized. Despite an integrated care model, goal-concordance was suboptimal. More comprehensive community networks and resources, better pain control and personalized care planning discussions are recommended. Future research could examine factors in non-cancer patients.


2012 ◽  
Vol 15 (3) ◽  
pp. 277-281 ◽  
Author(s):  
Peter L. Hudson ◽  
Elizabeth A. Lobb ◽  
Kristina Thomas ◽  
Rachel D. Zordan ◽  
Tom Trauer ◽  
...  

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