Support Needs for Bhutanese Family Members Taking Care of Loved Ones Diagnosed with Advanced Illness

2021 ◽  
pp. 082585972110662
Author(s):  
Tara Devi Laabar ◽  
Kirsten Auret ◽  
Christobel Saunders ◽  
Hanh Ngo ◽  
Claire E. Johnson
Keyword(s):  
Palliative Care ◽  
Family Members ◽  
Assessment Tools ◽  
World Health ◽  
Public Health Approach ◽  
Support Needs ◽  
Snowball Sampling ◽  
Advanced Illness ◽  
District Hospitals

Background: Palliative care aims to improve the quality of life of patients diagnosed with an advanced illness and their families. Family members, who often play a central role caring for their very ill loved ones, have significant support needs. In Bhutan, where palliative care is an emerging concept, the needs of family members have not been assessed thus far. Objective: This study explored the support needs of Bhutanese family members caring for their loved ones diagnosed with advanced illness. Design: This is a cross-sectional descriptive study. Setting/Subjects: Study sites included the national referral hospital, the two regional referral hospitals, four district hospitals and Basic Health Units (Grade I and II), spread across Bhutan. Participants were recruited through purposeful and snowball sampling strategies. Data were collected from May to August 2019. The Carer Support Needs Assessment Tools (CSNAT) was used. Results: Despite unforeseen challenges, 46 family members out of 60 identified (77%) participated in the survey. Twenty-three (50%) cared for relatives with advanced cancer and the remainder for loved ones with non-malignant conditions. This study found high support needs among both groups. The priority needs included understanding their relative's illness, managing symptoms, providing personal care, financial aspects, dealing with their own feelings and emotions and knowing what to expect in the future. Conclusion: This study will help inform the World Health Organization recommended public health approach to palliative care modified to the Bhutanese context for enabling a cost-effective intervention to improve the quality of lives of patients and families.

A Public Health Approach to Palliative Care in the Canadian Context

2019 ◽  
Vol 37 (7) ◽  
pp. 492-496 ◽  
Author(s):  
Giovanna Sirianni
Keyword(s):  
Public Health ◽  
Palliative Care ◽  
Care Delivery ◽  
World Health ◽  
Public Health Approach ◽  
Multiple Streams ◽  
Multiple Streams Framework ◽  
Canadian Context ◽  
Health Organization

Palliative care helps improve the quality of life of individuals facing life-limiting illness throughout the course of their disease. In Canada, delivery and access to palliative care has been fraught with challenges including differential availability of services based on geography, funding, language, and socioeconomic status. Many groups, including the World Health Organization, have advocated for a public health approach to palliative care as an antidote to fragmented service delivery. Multiple scholars, academics, and public health advocates have suggested that a public health approach to palliative care can help with issues of access, equity, and cost. Through the lens of Kingdon’s Multiple Streams Framework, this commentary will explore potential reasons why a public health approach to palliative care has not been adopted in the Canadian context and why this is an opportune time to consider this policy innovation. The Compassionate Communities concept is discussed as a potential solution to a public health approach to palliative care delivery.

Perceived caregiving preparedness and quality of life among Indonesian family caregivers of patients with life-limiting illness

2021 ◽  
Vol 27 (6) ◽  
pp. 293-301
Author(s):  
Erna Rochmawati ◽  
Yuli Prawitasari
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Member ◽  
Family Caregivers ◽  
Family Members ◽  
Cross Sectional Study ◽  
World Health ◽  
Cross Sectional ◽  
World Health Organization Quality

Background: Family caregivers play an important role in palliative care. However, family caregivers often report that they felt insufficiently prepared to become a caregiver. This lack of preparedness may lead to a decline in the caregiver's quality of life (QoL), and they may not be able to provide sufficient palliative care to their family member. Aims: To investigate the preparedness of family members to become caregivers alongside their QoL. Method: A correlational cross-sectional study design was used. A sample of 104 family caregivers completed a World Health Organization Quality of Life Brief to assess the QoL of participants. The Caregiving Inventory (CGI) was used to assess how prepared family members felt to become care-givers, and the CGI also included questions related to the patient's socio-demographic status and illness. Correlation analysis was used to address the research questions. Caregivers were caring for a family member with a life-limiting illness in a suburban district of Indonesia. Findings: The 104 family caregivers had a relatively low score for both QoL and caregiving preparedness. A caregiver feeling more prepared was associated with a higher QoL. The study also found a positive correlation (r value, between 0.236–0.481) between perceived caregiving preparedness, including its factors, and domains of QoL. Conclusion: A person's preparedness to become a caregiver is significantly associated with all QoL domains: physical, psychological, social and environmental. Family members can be better prepared to become a caregiver with training and information about personal care and symptom management.

scholarly journals Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members

Medicina ◽  
2021 ◽  
Vol 57 (1) ◽  
pp. 43
Author(s):  
Esme Brittain ◽  
Nina Muirhead ◽  
Andrew Y. Finlay ◽  
Jui Vyas
Keyword(s):  
Quality Of Life ◽  
Chronic Fatigue Syndrome ◽  
Physical Health ◽  
Family Members ◽  
Chronic Fatigue ◽  
Myalgic Encephalomyelitis ◽  
World Health ◽  
Life Questionnaire ◽  
Fatigue Syndrome

Background and objectives: To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments. Materials and Methods: A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire. Results: ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members’ quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores. Conclusions: This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.

scholarly journals The Impact of COVID-19 Pandemic and Lockdown Measures on Quality of Life among Italian General Population

2021 ◽  
Vol 10 (2) ◽  
pp. 289 ◽  
Author(s):  
Maria Stella Epifanio ◽  
Federica Andrei ◽  
Giacomo Mancini ◽  
Francesca Agostini ◽  
Marco Andrea Piombo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Online Survey ◽  
Physical Space ◽  
Sampling Strategy ◽  
World Health ◽  
Snowball Sampling ◽  
World Health Organization Quality ◽  
The World ◽  
The Impact

The COVID-19 pandemic that has hit the world in the year 2020 has put a strain on our ability to cope with events and revolutionized our daily habits. On 9 March, Italy was forced to lockdown to prevent the spread of the infection, with measures including the mandatory closure of schools and nonessential activities, travel restrictions, and the obligation to spend entire weeks in the same physical space. The aim of this study was to assess the impact of the COVID-19 pandemic and lockdown measures on quality of life (QoL) in a large Italian sample, in order to investigate possible differences in QoL levels related to both demographic and pandemic-specific variables. A total of 2251 Italian adults (1665 women, mainly young and middle adults) were recruited via a snowball sampling strategy. Participants were requested to answer to an online survey, which included demographic and COVID-related information items, and the World Health Organization Quality of Life BREF questionnaire (WHOQOL-BREF). The results showed statistically significant differences in QoL depending on a number of variables, including sex, area of residence in Italy, and being diagnosed with a medical/psychiatric condition. To our knowledge, this is the first study to assess QoL during COVID-19 pandemic in Italy, therefore the present findings can offer guidelines regarding which social groups are more vulnerable of a decline in QoL and would benefit of psychological interventions.

scholarly journals PENGEMBANGAN KAPASITAS PEREMPUAN BAGI IBU-IBU RELAWAN PROGRAM PALIATIF DI DESA KAMBINGAN DAN DESA KREMBUNG, KECAMATAN CERME, KABUPATEN GRESIK

2020 ◽  
Vol 4 (1) ◽  
pp. 189
Author(s):  
Sulikah Asmorowati ◽  
Inge Dhamanty
Keyword(s):  
Palliative Care ◽  
High Rate ◽  
World Health ◽  
Target Area ◽  
Target Groups ◽  
Community Project ◽  
Health Organization ◽  
End Stage

The high rate of deaths caused by serious illnesses has led the World Health Organization (WHO) to recommend palliative care that is considered to be able to improve the quality of patient’s live Palliative care or service is service for patients with serious illnesses, such as cancer (stadium or end-stage). In this activity, however, palliative care and service is extended so that it includes diseases that are not contagious but deadly (thus, contributed significantly to mortality rate), including such illnesses as diabetes, high-blood pressure, cholesterol, stroke and other similar illnesses. These illnesses are now increasingly being suffered by and become the major cause of death (caused by illnesses) amongst Indonesians. In order to increase the availability of palliative services in the target area, this community project provides training and assistance to develop women’s capacity in the villages of Kambingan and Ngembung, Cerme, Gresik, so that they are ready to volunteers for palliative care and service in their respective communities. The projects were conducted by providing material through lectures, and modules; followed by assistance to form a team of palliative case and service. At the end, this project resulted in the increasing understanding, and capacity of women (and mothers or PKK member), as the target groups about palliative care and services. In turn, the women were then ready to become volunteers for palliative care and program.abstrakTingginya tingkat kematian akibat penyakit serius membuat WHO menyarankan untuk melakukan perawatan paliatif yang dianggap dapat meningkatkan kualitas hidup pasien. Program atau layanan paliatif adalah pelayanan kepada pasien dengan penyakit berat, yaitu kanker (stadium akhir). Dalam kegiatan pengabdian masyarakat (pengmas) ini, layanan paliatif diperluas sehingga meliputi pula penyakit-penyakit yang tidak menular namun mematikan, seperti penyakit diabates, darah tinggi, kolesterol, stroke dan sejenisnya yang dewasa ini semakin banyak di derita masyarakat Indonesia. Kegiatan pengmas ini memberikan pelatihan dan pendampingan untuk mengembangkan kapasitas ibu-ibu tim penggerak dan anggota PKK di Desa Kambingan dan Desa Ngembung, Kecamatan Cerme, Kabupaten Gresik agar siap untuk menjadi relawan program paliatif di lingkungan masyarakat masing-masing. Metode yang digunakan dalam kegiatan ini adalah dengan pemberian materi melalui ceramah, pemberian modul, serta pendampingan pembentukan tim paliatif sebagai follow-up kegiatan. Hasil yang dicapai dari kegiatan pengabdian masyarakat ini adalah meningkatnya pemahaman masyarakat khususnya ibu-ibu tentang layanan paliatif, serta meningkatnya kapasitas mereka,sehingga siap menjadi relawan program paliatif.

Anxiety Disorders in Palliative Care

2014 ◽  
pp. 19-28
Author(s):  
William S. Breitbart
Keyword(s):  
Palliative Care ◽  
Anxiety Disorders ◽  
Medical Condition ◽  
Terminally Ill ◽  
Adjustment Disorder ◽  
Assessment Tools ◽  
Pharmacological Agents ◽  
General Medical Condition ◽  
Severe Anxiety

Anxiety is common in palliative care patients and may significantly impact patients’ quality of life. Anxiety can have many etiologies resulting in different anxiety syndromes, ranging from adjustment disorder, anxiety resulting from general medical condition, to medication-induced anxiety disorders. Pre-existing anxiety disorders should also be taken into consideration in palliative care settings. Different screening and assessment tools have been used to improve recognition and assessment of anxiety in the terminally ill. Treatment of anxiety in this patient population includes use of a variety of pharmacological agents to relieve severe anxiety symptoms and use of psychotherapy interventions that have been shown to be safe and effective in the terminally ill. This chapter includes an overview of the prevalence, assessment, and management of anxiety disorders in palliative care settings.

Ethnic and cultural aspects of palliative care

2015 ◽  
Author(s):  
LaVera Crawley ◽  
Jonathan Koffman
Keyword(s):  
Palliative Care ◽  
End Of Life Care ◽  
World Health ◽  
Life Care ◽  
Cultural Aspects ◽  
Physical Conditions ◽  
Appropriate Treatment ◽  
Definition Of ◽  
Health Organization

This chapter attempts to identify ‘differences that make a difference’ when individuals and groups negotiate institutions and practices for palliative and end-of-life care. Two influences on the practice of palliative care-immigration and health disparities-are examined. The World Health Organization definition of palliative care specifies two goals: improving quality of life of patients and families and preventing and relieving suffering. It identifies three ‘colour blind’ strategies for meeting those goals: early identification, impeccable assessment, and (appropriate) treatment. Lastly, the definition addresses four domains of care: (1) problems related to pain, (2) physical conditions, (3) the psychosocial, (4) and the spiritual. This chapter specifically addresses these goals, strategies, and domains in relation to delivering quality palliative care in cross- or multicultural settings.

scholarly journals Evaluation of the Quality of Dying and Death Questionnaire in Kenya

2019 ◽  
pp. 1-16
Author(s):  
Kenneth Mah ◽  
Richard A. Powell ◽  
Carmine Malfitano ◽  
Nancy Gikaara ◽  
Lesley Chalklin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advanced Cancer ◽  
Assessment Tools ◽  
Treatment Preferences ◽  
Culturally Appropriate ◽  
Patient Centered ◽  
P Values ◽  
Quality Of Dying ◽  
Cancer Sample

PURPOSE A culturally appropriate, patient-centered measure of the quality of dying and death is needed to advance palliative care in Africa. We therefore evaluated the Quality of Dying and Death Questionnaire (QODD) in a Kenyan hospice sample and compared item ratings with those from a Canadian advanced-cancer sample. METHODS Caregivers of deceased patients from three Kenyan hospices completed the QODD. Their QODD item ratings were compared with those from 602 caregivers of deceased patients with advanced cancer in Ontario, Canada, and were correlated with overall quality of dying and death ratings. RESULTS Compared with the Ontario sample, outcomes in the Kenyan sample (N = 127; mean age, 48.21 years; standard deviation, 13.57 years) were worse on 14 QODD concerns and on overall quality of dying and death ( P values ≤ .001) but better on five concerns, including interpersonal and religious/spiritual concerns ( P values ≤ .005). Overall quality of dying was associated with better patient experiences with Symptoms and Personal Care, interpersonal, and religious/spiritual concerns ( P values < .01). Preparation for Death, Treatment Preferences, and Moment of Death items showed the most omitted ratings. CONCLUSION The quality of dying and death in Kenya is worse than in a setting with greater PC access, except in interpersonal and religious/spiritual domains. Cultural differences in perceptions of a good death and the acceptability of death-related discussions may affect ratings on the QODD. This measure requires revision and validation for use in African settings, but evidence from such patient-centered assessment tools can advance palliative care in this region.

scholarly journals Quality of life in schizophrenic patients: the influence of sociodemographic and clinical characteristics and satisfaction with social support

2018 ◽  
Vol 40 (3) ◽  
pp. 202-209 ◽  
Author(s):  
Lara Manuela Guedes de Pinho ◽  
Anabela Maria de Sousa Pereira ◽  
Cláudia Margarida Correia Balula Chaves
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Clinical Characteristics ◽  
Assessment Tools ◽  
Support Network ◽  
World Health ◽  
Satisfaction Scale ◽  
World Health Organization Quality ◽  
Schizophrenic Patients

Abstract Objective To evaluate the relationship of sociodemographic and clinical characteristics and satisfaction with social support with the quality of life of schizophrenic patients. Methodology This study included a sample of 268 participants. An interview was conducted to obtain sociodemographic and clinical data, supplemented with two assessment tools used to evaluate quality of life (World Health Organization Quality of Life instrument-Abbreviated version – WHOQOL-Bref) and satisfaction with social support (Social Support Satisfaction Scale – SSSS). Descriptive and inferential analyses were performed. Results Most individuals were male (63.4%), with a mean age of 45.4 years, single (85.4%), living with their family (62.3%) and unemployed (90.3%). As for clinical characteristics, most had the disease for less than 20 years (50.7%), and 55.6% had at least one hospitalization within the last 5 years. Being employed and having had no hospitalization within the last 5 years were positively correlated with one or more WHOQOL-Bref domains. The results of the variables intimacy (p<0.001) and satisfaction with friends (p<0.001) were independently related to the total WHOQOL-Bref score. Conclusion Having a job, having had no hospitalization within the last 5 years and having greater satisfaction with social support are factors that positively influence quality of life among schizophrenics. It is therefore crucial that the psychosocial rehabilitation of patients with schizophrenia take these factors into account, increasing the support network, preventing relapses and promoting occupational activities.

Assessment tools for palliative care.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 66-66
Author(s):  
Sarina Isenberg ◽  
Rebecca Aslakson ◽  
Sydney Morss Dy ◽  
Renee Wilson ◽  
Julie Waldfogel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Clinical Practice ◽  
Quality Indicators ◽  
Systematic Reviews ◽  
Grey Literature ◽  
Care Quality ◽  
Assessment Tools ◽  
Patient Reported

66 Background: Recent reviews have not comprehensively addressed palliative care (PC) assessment tools. This project summarizes the extent of evidence about PC assessment tools for patients and families, and how tools have been used for clinical care, quality indicators, and evaluation of interventions. Methods: We searched MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews for systematic reviews of assessment tools for PC, from January 2007 to March 2016. We searched the grey literature for domains without systematic reviews, and for domains with systematic reviews > three years old. Paired investigators independently screened search results and grey literature to determine eligibility, and assessed risk of bias of systematic reviews. The team selected the most recent and highest-quality systematic reviews for each domain. One investigator abstracted information, and a second investigator checked the information. Results: Using the National Consensus Project Palliative Care Guidelines domains, we included nine systematic reviews with 167 tools, and six tools from grey literature. Most tools were in physical, psychological, psychiatric, and social aspects of care, care at the end of life, and tools that cross domains (quality of life and caregiver-reported experience). Only two tools directly addressed spiritual aspects and none addressed cultural or patient-reported experience. Internal consistency reliability was evaluated for almost all tools; most reported construct validity; and few reported responsiveness (sensitivity to change). Few studies evaluated the use of assessment tools in quality indicators or clinical practice. A systematic review of 38 PC interventions and the assessment tools used found that at least 25 interventions included physical, psychosocial and psychiatric, and quality of life tools, but the tools varied extensively, and only nine included patient experience tools. Conclusions: Although assessment tools exist in many PC domains, tools are needed to assess spiritual and cultural aspects of care, and patient-reported experience. Research is needed concerning: tools in clinical practice and quality of care; comparison of existing tools; and evaluation and dissemination tools with evidence of responsiveness.

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