scholarly journals Integrating Palliative Care by Virtue of Diplomacy; A Cross-sectional Group Interview Study of the Roles and Attitudes of Palliative Care Professionals to Further Integrate Palliative Care in Europe

2020 ◽  
Author(s):  
Jelle van Gurp ◽  
Jeroen van Wijngaarden ◽  
Sheila Payne ◽  
Lukas Radbruch ◽  
Karen van Beek ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Practical Wisdom ◽  
Research Question ◽  
The European Union ◽  
Care Providers ◽  
Cross Sectional ◽  
Four Dimensions ◽  
Standing Up

Background: Palliative care involves the care for patients with severe and advanced diseases with a focus on quality of life and symptom management. Integration of palliative care with curative and/or chronic care is expected to lead to better results in terms of quality of life and reduced costs. Although initiatives in different countries in Europe choose different structures to integrate care, they face similar challenges when it comes to creating trust and aligning visions, cultures and professional values. This paper sets out to answer the following research question: what roles and attitudes do palliative care professionals need to adopt to further integrate palliative care in Europe? Methods: As part of the European Union (EU)-funded research project InSup-C (Integrated Supportive and Palliative Care). (2012-2016), 19 semi-structured group interviews with 136 (palliative) care professionals in 5 European countries (Germany, the United Kingdom, Belgium, the Netherlands, Hungary) were conducted. A thematic analysis was conducted. Results: Integration of palliative care calls for diplomatic professionals that can bring a cultural shift: to get palliative care, with its particular focus on the four dimensions (physical, psychological, social, spiritual), integrated into historically established medical procedures and guidelines. This requires (a) to find an entrance (for telling a normative story), and (b) to maintain and deepen relationships (in order to build trust). It means using the appropriate words and sending a univocal team message to patients and being grateful, modest, and aiming for a quiet revolution with curation oriented healthcare professionals. Conclusion: Diplomacy appears to be essential to palliative care providers for realizing trust and what can be defined as normative integration between palliative and curative and/or chronic medicine. It requires a practical wisdom about the culture and goals of regular care, as well as keeping a middle road between assimilating with values in regular medicine and standing up for the basic values central to palliative care.

Quality of life in palliative care: principles and practice

2015 ◽  
Author(s):  
Stein Kaasa ◽  
Jon Håvard Loge
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care Providers ◽  
Research Question ◽  
Patient Reported Outcome ◽  
Care Providers ◽  
Sequential Approach ◽  
Patient Reported

To improve or sustain patients’ health-related quality of life (HRQOL) is the main goal of palliative care. In health care, HRQOL encompasses a range of components that are measurable and related to health, disease, illness, and medical interventions. Another term, patient-reported outcome (PRO), is used and understood as any measure that collects responses directly from the patients and measures any aspect of patients’ health status that is reported by the patients without any interpretation by health-care providers or family members. The selection of PRO-instruments (questionnaires) is recommended to follow a sequential approach. Define overall aim(s), define the research question(s), agree upon the key outcome(s), and select the appropriate set of questions/questionnaires guided by the primary and secondary outcomes. In general, it is recommended to use a HRQOL measure of generic or disease-specific character and supplement it with domain-specific measure(s) (such as measurement of fatigue, pain, anxiety, depression, etc.) reflecting the purpose(s) of the data collection.

Assisting People With Their Living, Not Their Dying: Health Professionals’ Perspectives of Palliative Care and Opioids in ILD

2021 ◽  
pp. 104990912110186
Author(s):  
Lauren Russo ◽  
Karen Willis ◽  
Natasha Smallwood
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care System ◽  
Therapeutic Relationships ◽  
Specialist Palliative Care ◽  
Cross Sectional ◽  
Symptom Palliation ◽  
Care System

Objectives: Interstitial lung disease (ILD) is a debilitating and life-limiting condition, requiring multi-disciplinary care. While guidelines recommend early specialist palliative care referral to improve symptoms and quality of life, few patients access such care towards the end-of-life. This study aimed to explore clinicians’ perspectives regarding specialist palliative care and opioids to understand barriers to optimal care and guide clinical practice improvement initiatives. Methods: A cross-sectional, exploratory, qualitative study was undertaken with Australian respiratory clinicians caring for people with ILD (n = 17). In-depth, semi-structured interviews were audio-recorded, transcribed verbatim and coded. Thematic analysis was undertaken to extrapolate recurring ideas from the data. Results: Four themes were identified: 1) understanding how to improve patient care and support, 2) the need to dispel stigmatized beliefs and misconceptions, 3) the importance of trusted relationships and good communication and 4) the challenges of navigating the health-care system. Participants discussed the need to implement early specialist palliative care and symptom palliation to alleviate symptoms, provide emotional support and augment quality of life. Participants described challenges accessing palliative care and opioids due to stigmatized beliefs amongst patients and clinicians and difficulties navigating the health-care system. Trusted therapeutic relationships with patients and strong inter-disciplinary partnerships with collaborative education and communication were perceived to improve patients’ access to symptom palliation. Conclusion: Specialist palliative care and opioids were believed to improve patients’ quality of life, however, many barriers can make accessing such care challenging. To address these issues, multi-disciplinary collaboration, high-quality communication and trusted therapeutic relationships are crucial throughout the ILD illness journey.

scholarly journals A scoping review of palliative care outcome measures in interstitial lung disease

2021 ◽  
Vol 30 (161) ◽  
pp. 210080
Author(s):  
Rebecca A. Gersten ◽  
Amanda C. Moale ◽  
Bhavna Seth ◽  
Judith B. Vick ◽  
Hannah Brown ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Palliative Care ◽  
Physical Health ◽  
Outcome Measures ◽  
Secondary Analysis ◽  
Social Health ◽  
Cross Sectional ◽  
Care Outcome

Interstitial lung disease (ILD) confers a high mortality and symptom burden, substantially impacting quality of life. Studies evaluating palliative care in ILD are rapidly expanding. Uniform outcome measures are crucial to assessing the impact of palliative care in ILD. This scoping review evaluates existing outcome measures in general health-related quality of life (HRQoL), physical health, mental health, social health and advance care planning (ACP) domains in patients with ILD. Articles in English with quantitative assessment of at least one measure of general HRQoL, physical health, mental health, social health or ACP in patients with ILD were included. Searches across three databases yielded 3488 non-duplicate articles. 23 met eligibility criteria and included three randomised controlled trials (RCTs) or secondary analysis of an RCT (13%), three cross-sectional studies or secondary analysis of cross-sectional study (13%), one prospective study (4%) and 16 retrospective studies (70%). Among eligible articles, 25 distinct instruments were identified. Six studies assessed general HRQoL (26%), 16 assessed physical health (70%), 11 assessed mental health (48%), six assessed social health (26%) and 16 assessed ACP (70%). The ability to compare results across studies remains challenging given the heterogeneity in outcome measures. Future work is needed to develop core palliative care outcome measures in ILD.

scholarly journals The relationship of nursing home price and quality of life

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Sarah Raes ◽  
Sophie Vandepitte ◽  
Delphine De Smedt ◽  
Herlinde Wynendaele ◽  
Yannai DeJonghe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Nursing Homes ◽  
Research Question ◽  
Nursing Home Residents ◽  
Cross Sectional Study ◽  
Ownership Type ◽  
Cross Sectional ◽  
The Relationship

Abstract Background Knowledge about the relationship between the residents’ Quality of Life (QOL) and the nursing home price is currently lacking. Therefore, this study investigates the relationship between 11 dimensions of QOL and nursing homes price in Flemish nursing homes. Methods The data used in this cross-sectional study were collected by the Flemish government from years 2014 to 2017 and originates from 659 Flemish nursing homes. From 2014 to 2016, data on the QOL of 21,756 residents was assessed with the InterRAI instrument. This instrument contains 11 QOL dimensions. Multiple linear regression analyses were conducted to examine the research question. Results The multiple linear regressions indicated that a 10 euro increase in the daily nursing home price is associated with a significant decrease (P <  0.001) of 0.1 in 5 dimensions of QOL (access to services, comfort and environment, food and meals, respect, and safety and security). Hence, our results indicate that the association between price and QOL is very small. When conducting a subgroup analysis based on ownership type, the earlier found results remained only statistically significant for private nursing homes. Conclusion Our findings show that nursing home price is of limited importance with respect to resident QOL. Contrary to popular belief, our study demonstrates a limited negative effect of price on QOL. Further research that includes other indicators of QOL is needed to allow policymakers and nursing home managers to improve nursing home residents’ QOL.

scholarly journals The McGill Quality of Life Questionnaire-Revised (MQOL-R). Psychometric properties and validation of a Brazilian version on palliative care patients: a cross-sectional study

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Paul Vicuña Serrano ◽  
Gerardo Beltran Serrano ◽  
Iraci L. S. Torres ◽  
Roberta Rossi Graudner ◽  
Wolnei Caumo
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Psychometric Properties ◽  
Convergent Validity ◽  
Karnofsky Performance Scale ◽  
Life Questionnaire ◽  
Cross Sectional ◽  
Quality Of Life Questionnaire ◽  
Validity Criterion

Abstract Background To assess the psychometric properties, including internal consistency, construct validity, criterion validity, criterion-group validity, and responsiveness, the Reviewed McGill Quality of Life Questionnaire (MQOL-R), into Brazilian Portuguese-(BrP). Also, to analyze the relationship of the BrP-MQOL-R with the scores on the Karnofsky Performance Scale (KPS) and on the Numerical Pain Scale (NPS 0–10). Methods The BrP-MQOL-R was administered to a sample of 146 adults (men = 78). A team of experts translated the MQOL-R according to international guidelines. Convergent validity and Confirmatory factor analysis (CFA) was performed. Results The BrP-MQOL-R Cronbach’s alpha was 0.85. CFA supported the original four-factor structure, with the following revised model fit-indices: PCLOSE = 0.131, Tucker-Lewis Index (TLI) rho 2 = 0.918, incremental fit index (IFI) delta 2 = 0.936. The convergence validity is supported by a significant correlation between BrP-MQOL-R total scores and their subscales with KPS and with the single item related to the quality of life. And by a converse correlation with the pain scores in the NPS (0–10). Receiver operator characteristics (ROC) analysis showed subjects with KPS equal to or lower than 30% could be discriminated from those with scores on KPS higher than 30% by an area under the curve (AUC) = 0.71, sensitivity = 97%, and specificity = 92%). Conclusion The BrP-MQOL-R proves to be a reliable instrument for assessing the quality of life (QOL) in palliative care (PC), with primary evidence of validity. BrP-MQOL-R presented adequate discriminate properties to identify distinct conditions that impact the QOL in PC.

scholarly journals Complementary and Alternative Medicine Use and Its Association with Quality of Life among Cancer Patients Receiving Chemotherapy in Ethiopia: A Cross-Sectional Study

2016 ◽  
Vol 2016 ◽  
pp. 1-8 ◽  
Author(s):  
Daniel Asfaw Erku
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Cancer Patients ◽  
Health Care Providers ◽  
Cross Sectional Study ◽  
Care Providers ◽  
Sectional Study ◽  
Cross Sectional ◽  
Cam Use

Background.Today, complementary and alternative medicine (CAM) use is being routinely practiced by cancer patients worldwide. This study aimed at examining the prevalence of CAM use in patients with cancer and comparing the quality of life (QoL) in CAM users and nonusers.Methods.A cross-sectional study was employed on 195 cancer patients receiving chemotherapy at Gondar University Referral Hospital (GURH) chemotherapy center. Interviewer-administered questionnaires were used and the collected data were analyzed by the Statistical Package for the Social Sciences (SPSS) software version 21.0 for Windows.Results.154 (79%) patients were found to be users of CAM. Educational status, average monthly income, disease stage, and comorbidity were strong predictors of use of CAM. The most commonly utilized types of CAM were traditional herbal based medicine (72.1%) and only 20.8% of patients discuss with their doctors CAM use. No significant difference was found in QoL between CAM users and nonusers except in financial difficulties (p=0.020).Conclusions.This study revealed a high rate of CAM use with very low disclosure rate to their health care providers. Health care providers should be open to discuss the use of CAM with their patients as it will lead to better health outcome.

Caring for the caregiver: factors associated with the quality of life of family caregivers to palliative care patients

2015 ◽  
Vol 3 (3) ◽  
pp. 352
Author(s):  
Macarena Quesada ◽  
Manuel Madrigal ◽  
Aurelio Luna ◽  
Maria D Perez-Carceles
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Care Patient ◽  
Terminal Phase ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Factors Associated ◽  
The Impact

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.    

scholarly journals Health-related quality of life among children with Turner syndrome: controlled cross-sectional study

2017 ◽  
Vol 30 (8) ◽  
Author(s):  
Pascal Amedro ◽  
Nabil Tahhan ◽  
Helena Bertet ◽  
Claire Jeandel ◽  
Sophie Guillaumont ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Turner Syndrome ◽  
Cross Sectional Study ◽  
Health Related Quality ◽  
Cross Sectional ◽  
Four Dimensions ◽  
Young Females ◽  
Related Quality ◽  
Health Related

AbstractBackground:The aim of the study was to assess health-related quality of life (HR-QoL) in children with Turner syndrome in comparison with controls.Methods:We prospectively recruited 16 female girls with Turner syndrome (mean age 15.2±2.6 years) and 78 female controls (mean age 12.7±2.8 years) in randomly selected schools. We used the PedsQL, a generic HR-QoL questionnaire (self and parents’ versions).Results:Global HR-QoL scores in Turner syndrome were lower than controls for self-reports (respectively, 74.3±3.0 vs. 82.8±1.3, p=0.01) and parents’ reports (62.7±3.8 vs. 80.1±1.7, p<0.0001). In Turner syndrome, self-reported HR-QoL was impaired in school functioning (70.6±4.0 vs. 80.71±1.7, p=0.02), social functioning (78.2±4.0 vs. 90.4±1.8, p<0.01) and physical functioning (78.5±3.2 vs. 87.1±1.4, p=0.02), but not in emotional functioning. Parents’ reported HR-QoL was impaired in all four dimensions.Conclusions:HR-QoL was impaired in this cohort of young females with Turner syndrome, as in previously reported adult studies. In addition to medical treatment and routine clinical follow-up, female girls and teenagers with Turner syndrome should also be supported psychologically by social, educational and psychotherapeutic interventions that aim to address their self-esteem and emotional difficulties.

scholarly journals The Role of Nurse in the Form of Palliative Care on the Quality of Life of Patients with Cervical Cancer

2020 ◽  
Vol 3 (2) ◽  
pp. 29
Author(s):  
Rita Kirana ◽  
Tut Barkinah ◽  
Vonny Khresna Dewi
Keyword(s):  
Quality Of Life ◽  
Cervical Cancer ◽  
Palliative Care ◽  
Linear Regression Analysis ◽  
Structured Interview ◽  
Cross Sectional ◽  
Nurse Role ◽  
Cross Sectional Design ◽  
Question Form

The diagnosis of cervical cancer has become a big burden for both patients and families. Most patients with advanced stage cancer have a low quality of life score which indicates they have a problem. while the family may not be ready to carry out its role in the quality of life of patients with cervical cancer. The objective of this research was to identify the correlation of nurse support in the form of palliative care on the quality of life of patients with cervical cancer. This research employed cross-sectional design. Population in this research was all patients with cervical cancer in gynecology ward in Banjarmasin. Participant for this research were patients with cervical cancer and nurses. Data were taken by structured interview and task question form. Linear regression analysis was applied with level of significance ≤0.05. The results shown that most nurses ha good level of their role in the form of palliative care while most patients also have moderate level of quality of life. Also there are significance correlations of nurse role in the form of palliative care on the quality of life of patients with cervical cancer. Keywords: cervical cancer; quality of life; palliative care; nurse; role

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