The Effect of Song-Oriented Music Therapy Using Life-Retrospective Techniques on the Quality of Life and Family Relationship of Patients and Primary Family Caregivers in Home-Based Hospice-Palliative Care

2021 ◽  
Vol 21 (1) ◽  
pp. 67-94
Author(s):  
Jeong-In Hong ◽  
◽  
Kyung-Suk Kim
Author(s):  
Romina Nemecek ◽  
Patrick Huber ◽  
Sophie Schur ◽  
Eva Masel ◽  
Stefanie Porkert ◽  
...  

Patients with advanced cancer have a substantial symptom burden, which deteriorates their quality of life. Palliative care improves well-being of patients and their family caregivers. Within the scope of a controlled pilot study, a user-friendly telepresence system is developed, which enables patients and family caregivers to send a direct request to a palliative care team. Additionally, a specially tailored database is developed, which contains up to date patient information. Twenty patients with advanced non-small cell lung cancer are consecutively assigned in a control and an intervention group. The intervention group receives the telemedically augmented care, whereas the control group receives standard care. The primary goal of this chapter is to determine the usability and feasibility; the secondary goal is the assessment of the intervention's impact on quality of life and the number of unscheduled hospital admissions. To sum up, telemedically supported ambulatory palliative care may synergistically help to improve safety and quality of life.


2017 ◽  
Vol 24 (5) ◽  
pp. 663-674 ◽  
Author(s):  
Alessandra Solari ◽  
Andrea Giordano ◽  
Francesco Patti ◽  
Maria Grazia Grasso ◽  
Paolo Confalonieri ◽  
...  

Background: Evidence on the efficacy of palliative care in persons with severe multiple sclerosis (MS) is scarce. Objective: To assess the efficacy of a home-based palliative approach (HPA) for adults with severe MS and their carers. Methods: Adults with severe MS-carer dyads were assigned (2:1 ratio) to either HPA or usual care (UC). At each center, a multi-professional team delivered the 6-month intervention. A blind examiner assessed dyads at baseline, 3 months, and 6 months. Primary outcome measures were Palliative care Outcome Scale-Symptoms-MS (POS-S-MS) and Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW, not assessed in severely cognitively compromised patients). Results: Of 78 dyads randomized, 76 (50 HPA, 26 UC) were analyzed. Symptom burden (POS-S-MS) significantly reduced in HPA group compared to UC ( p = 0.047). Effect size was 0.20 at 3 months and 0.32 at 6 months, and statistical significance was borderline in per-protocol analysis ( p = 0.062). Changes in SEIQoL-DW index did not differ in the two groups, as changes in secondary patient and carer outcomes. Conclusion: HPA slightly reduced symptoms burden. We found no evidence of HPA efficacy on patient quality of life and on secondary outcomes.


2019 ◽  
Vol 37 (3) ◽  
pp. 201-213 ◽  
Author(s):  
Karin Oechsle ◽  
Anneke Ullrich ◽  
Gabriella Marx ◽  
Gesine Benze ◽  
Feline Wowretzko ◽  
...  

Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer. Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient’s discharge or death at specialist inpatient palliative care ward. Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of “bodily pain” and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms. Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.


2015 ◽  
Vol 3 (3) ◽  
pp. 352
Author(s):  
Macarena Quesada ◽  
Manuel Madrigal ◽  
Aurelio Luna ◽  
Maria D Perez-Carceles

Purpose: The aim was to investigate the factors associated with the quality of life (QoL) of family caregivers to palliative care patients. Methods: A cross-sectional survey was conducted of 125 family caregivers of patients in the terminal phase of their illness and included in palliative care programs. Data were collected using WHOQOL-BREF, the socio-demographic characteristics of both caregiver and patient, clinical questions and information about caregiving. Results: The QoL of caregivers was lower than that of the national average for healthy people. Significantly lower QoL scores were obtained in the case of caregivers if they were women, over 55 years, uneducated, unemployed or the patient’s spouse. Cancer diagnosis and patients who were dependent for their Activities of Daily Living also lower caregiver QoL. The factors associated with higher caregiver QoL in each domain differed: being employed in the physical domain (OR:3.3; 95% CI:1.47-7.4), the patient receiving palliative care in hospital in the psychological domain (OR:3.05; 95% CI:1.19-7.7), a higher level of caregiver´s education in the social domain (OR:3.3; 95% CI:1.4-9.8) and caregivers between 45-55 years in the environmental domain (OR:5.4; 95% CI:1.6-9.2).Conclusion: Family caregivers of palliative care patients are highly burdened during caregiving. Characteristics of the patient and caregiver and the conditions under which care is performed, significantly affect QoL. We consider it essential to increase health professionals’ awareness of the importance of the role of the caregiver in providing services to the terminally ill, given the impact of the caregiver’s QoL on the QoL of the palliative care patient and its importance for the delivery of person-centered care at the end of life.    


2021 ◽  
Vol 74 (5) ◽  
Author(s):  
Fernando Ribeiro dos Santos ◽  
Sandra Pinto ◽  
Juliana Dias Reis Pessalacia ◽  
Bruna Moretti Luchesi ◽  
Lucimeire Aparecida da Silva ◽  
...  

ABSTRACT Objective: Evaluate the effects of clown activities on quality of life, depression, stress, anxiety, aid, and social support in patients eligible for palliative care (PC) attended in Primary Health Care (PHC). Method: A quasi-experimental study, with pre-intervention and post-intervention evaluation, carried out with 16 patients eligible for early PC in PHC in a Midwestern city. Patients received 24 visits with home-based clown activities. Results: The interventions evidenced improved quality of life and social support, with significant results for the Social Activities dimension (p = 0.023). Increased scores for Anxiety (p = 0.007) and Depression (p = 0.023) were also observed. Conclusion: Clown activities can bring positive results for the quality of life and social support of patients eligible for PC at home. They should be encouraged to interact with family knowledge and enhance humanized care, integral and centered on human relationships in PHC.


2021 ◽  
Vol 9 (E) ◽  
pp. 1190-1193
Author(s):  
Agustin Widyowati ◽  
Bhisma Murti ◽  
Aris Sudiyanto

People with mental disorders will experience a relapse even after 1 month of getting treatment or care from a health facility. The high recurrence rate can cause a decrease in quality of life. Efforts to prevent recurrence by involving family caregivers and reducing stigma from the community. This study aims to analyze the relationship between the ability of family caregivers and community stigma to prevent recurrence and improve the quality of life of people with mental disorders. This study used a cross-sectional approach. The research location is in Kediri Regency, East Java, Indonesia. Sampling was done by using the multistage random sampling technique. The number of samples is 76 respondents. The variables in this study were the ability of family caregivers, community stigma, disease recurrence, and quality of life for people with mental disorders. The data were analyzed using path analysis with the help of STATA 13. There is a relationship between the ability of family caregivers and community stigma to prevent recurrence and improve the quality of life of people with mental disorders.


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