scholarly journals What are healthcare providers’ understandings and experiences of compassion? The healthcare compassion model: a grounded theory study of healthcare providers in Canada

BMJ Open ◽  
2018 ◽  
Vol 8 (3) ◽  
pp. e019701 ◽  
Author(s):  
Shane Sinclair ◽  
Thomas F Hack ◽  
Shelley Raffin-Bouchal ◽  
Susan McClement ◽  
Kelli Stajduhar ◽  
...  
Keyword(s):  
Grounded Theory ◽  
Healthcare Provider ◽  
Healthcare Providers ◽  
Care Hospital ◽  
Care Services ◽  
Palliative Care Services ◽  
Patient Model ◽  
To Receive ◽  
Empirical Foundation ◽  
Insight Into

BackgroundHealthcare providers are considered the primary conduit of compassion in healthcare. Although most healthcare providers desire to provide compassion, and patients and families expect to receive it, an evidence-based understanding of the construct and its associated dimensions from the perspective of healthcare providers is needed.ObjectivesThe aim of this study was to investigate healthcare providers’ perspectives and experiences of compassion in order to generate an empirically derived, clinically informed model.DesignData were collected via focus groups with frontline healthcare providers and interviews with peer-nominated exemplary compassionate healthcare providers. Data were independently and collectively analysed by the research team in accordance with Straussian grounded theory.Setting and participants57 healthcare providers were recruited from urban and rural palliative care services spanning hospice, home care, hospital-based consult teams, and a dedicated inpatient unit within Alberta, Canada.ResultsFive categories and 13 associated themes were identified, illustrated in the Healthcare Provider Compassion Model depicting the dimensions of compassion and their relationship to one another. Compassion was conceptualised as—a virtuous and intentional response to know a person, to discern their needs and ameliorate their suffering through relational understanding and action.ConclusionsAn empirical foundation of healthcare providers’ perspectives on providing compassionate care was generated. While the dimensions of the Healthcare Provider Compassion Model were congruent with the previously developed Patient Model, further insight into compassion is now evident. The Healthcare Provider Compassion Model provides a model to guide clinical practice and research focused on developing interventions, measures and resources to improve it.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

End-of-life cancer care: Health service delivery in the last 12 months of life in Calgary, Alberta, Canada.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 171-171
Author(s):  
Marc Kerba ◽  
Ayn Sinnarajah ◽  
M Sarah Rose ◽  
Lynn Nicholson ◽  
Barbara Wheler ◽  
...  
Keyword(s):  
Palliative Care ◽  
Service Delivery ◽  
End Of Life ◽  
Disease Duration ◽  
Multivariate Regression Analysis ◽  
Health Service Delivery ◽  
Care Services ◽  
Palliative Care Services ◽  
Eol Care ◽  
To Receive

171 Background: In Calgary, Alberta, the Calgary Zone Palliative Care Collaborative (CZPCC) undertook a study to examine the current state of cancer and palliative services and to recommend steps to address gaps in service delivery. We hypothesized that early access to palliative care services would reduce utilization of active cancer treatments and services for individuals nearing the end of life. Our study objectives were to determine the utilization and timing of acute, palliative and oncology-related services in Calgary. Methods: This retrospective study examined cancer registry and administrative data for patients > 18 years, who died in 2012. Measures of aggressive end of life care (EOL) were also collected. A combination of descriptive statistics, tests of association and multivariate regression analysis were conducted. Results: N = 1909 died of cancer in 2012: median age 73 years (IQR: 62-82 years) and median disease duration 364 days (IQR: 92-1114 days). 40.6% of patients received systemic treatment in last 12 months of life. 29.9% received radiotherapy and 13.0% received psychosocial/spiritual care. Palliative care contact was 80.7%, inclusive of 20.6% who had an intensive palliative care unit admission. 5.2% had EOL chemotherapy and 3.8% received EOL radiotherapy. Up to 10.4% of patients had one or more hospital admission. There was no significant effect of age on those who received aggressive EOL care. Men had an increased probability to receive aggressive EOL care (p = 0.015). Tumor group was also associated with receiving aggressive EOL (p < 0.001), with the highest utilization in Head and Neck and hematological malignancies. In patients with a disease duration of > 4 months those who received palliative care at least 2-3 months prior to death were less likely to receive aggressive EOL care (P < 0.001). Patients whose disease duration was < 1 month were less likely to receive aggressive EOL care if they received palliative care services (p = 0.02). Conclusions: The provision of palliative care services at the end of life is most needed among men and certain tumor groups who are the highest users of aggressive EOL care.

scholarly journals The views of patients with brain cancer about palliative care: a qualitative study

2017 ◽  
Vol 24 (6) ◽  
pp. 374 ◽  
Author(s):  
M. Vierhout ◽  
M. Daniels ◽  
P. Mazzotta ◽  
J. Vlahos ◽  
W.P. Mason ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Brain Cancer ◽  
Chronic Conditions ◽  
Structured Interviews ◽  
Optimal Care ◽  
Early Palliative Care ◽  
Care Services ◽  
Palliative Care Services ◽  
To Receive

Background Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting.Methods Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients.Results Seven overarching actions emerged:Patients would prefer to receive palliative care in the home.Increased time with caregivers and family are the main appeals of home care.Patients express dissatisfaction with brief and superficial interactions with health care providers.Patients believe that palliative care can contribute to their emotional well-being.Patients are open to palliative care if they believe that it will not diminish optimism.There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it.Conclusions Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.

HSR19-080: Situational Analysis and Needs Assessment Regarding the Availability and Extent of Pediatric Palliative Care Services in the Philippines

2019 ◽  
Vol 17 (3.5) ◽  
pp. HSR19-080
Author(s):  
Loyda Amor N. Cajucom ◽  
Rita C. Ramos ◽  
Raymund Kernell B. Mañago ◽  
Raya Kathreen T. Fuentes ◽  
Primo G. Garcia ◽  
...  
Keyword(s):  
Palliative Care ◽  
Pediatric Oncology ◽  
Healthcare Providers ◽  
The Philippines ◽  
Situational Analysis ◽  
Care Needs ◽  
Care Services ◽  
Palliative Care Services ◽  
The Common ◽  
Palliative Care Needs

Background: Around 200,000 pediatric clients are diagnosed with cancer each year globally. Majority (84%) of cancer cases are found in developing countries with 20% average survival rate (Ferlay et al, 2012). Two-thirds of pediatric oncology clients in the Philippines are diagnosed at advanced stages (Lecciones, 2015). Abandonment of treatment is high at 80%. Only about 10%–20% of clients attain long-term survival despite availability of multidisciplinary management. These outcomes reflect the gap in service delivery for pediatric oncology clients (Ferlay et al, 2012). Therefore, to improve accessibility to healthcare, it is necessary to determine the perceived palliative care needs of clients, their caregivers, and healthcare providers. Objective: To identify the availability of palliative care services in the country, identify barriers in service delivery, and determine the palliative care needs of pediatric oncology clients, their caregivers, and healthcare providers. Methods: The descriptive, cross-sectional study design involved a situational analysis by mapping 2 Philippine palliative centers. Focus group discussions (FGD) and interviews with healthcare professionals were conducted to determine the extent of services, geographical coverage, and perceived palliative care needs. The needs assessment tool by WHO (2004) was adopted to identify the palliative care needs of pediatric oncology clients as perceived by caregivers. Results: From a total of 181 primary caregivers, the identified main problems in caring was the economical (95.6%) aspect. Financial support (92%) was the most pressing need. Caregivers would like to learn more about general cancer care (39%) and nutrition counseling (24%). The most common palliative care needs as perceived by caregivers included accessibility to cancer facility (27%), free cancer medications (12.7%), and financial assistance (14.9%). The common barriers in rendering care were financial constraints (66%), behavioral changes (12.7%), and travel limitations (6%). The common themes found during the FGDs and interviews were: (1) inadequate human and structural health resources; (2) need to focus on psychosocial care; (3) addressing economic constraints; and (4) need to increase cancer awareness among caregivers. Conclusion: The findings of the study documented the need for the development of structured programs for pediatric palliative care in the Philippines.

Palliative care for vulnerable populations

2012 ◽  
Vol 10 (1) ◽  
pp. 37-42 ◽  
Author(s):  
Deborah Stienstra ◽  
Harvey Max Chochinov
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Vulnerable Populations ◽  
Healthcare Providers ◽  
Care Services ◽  
Barriers To Access ◽  
Whole Person ◽  
Palliative Care Services ◽  
Support Team ◽  
Hospice And Palliative Care

AbstractObjective:The purpose of this article is to identify how inclusive and accessible palliative care can be achieved for all, including those labelled as vulnerable populations.Method:Drawing on a review of existing literature as well the research of the Vulnerable Persons and End-of-Life New Emerging Team (VP-NET), this article reflects on what changes can be made within palliative care to make it more inclusive.Results:Experiences of marginalization often result, intentionally or unintentionally, in differential treatment in healthcare. This increased vulnerability may result from attitudes of healthcare providers or from barriers as a result of “normal” care practices and policies that may exclude or stigmatize certain populations. This may include identifying when palliative care is necessary, who receives palliative care and where, and what is necessary to complement palliative care.Significance of results:Inclusive and accessible palliative care can become possible through building on the existing strengths in palliative care, as well as addressing existing barriers. This may include treating the whole person and that person's support team, including paid support workers, as part of the unit of care. It involves ensuring physically accessible hospice and palliative care locations, as well as thinking creatively about how to include those excluded in traditional locations. Inclusive palliative care also ensures coordination with other care services. Addressing the barriers to access, and inclusion of those who have been excluded within existing palliative care services, will ensure better palliative and end-of-life care for everyone.

scholarly journals Barriers to specialist palliative care in interstitial lung disease: a systematic review

2018 ◽  
Vol 9 (2) ◽  
pp. 130-138 ◽  
Author(s):  
Jee Whang Kim ◽  
Chris Atkins ◽  
Andrew M Wilson
Keyword(s):  
Palliative Care ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Malignant Disease ◽  
Specialist Palliative Care ◽  
End Of Life Decisions ◽  
Care Services ◽  
Palliative Care Services ◽  
To Receive ◽  
Current Guidelines

BackgroundCurrent guidelines recommend palliative care based on individual needs for patients with idiopathic pulmonary fibrosis. However, patients with interstitial lung disease (ILD) are less likely to receive specialist palliative care services compared with patients with malignant disease. The aim of this review is to summarise recent studies addressing barriers to referring patients to specialist palliative care services.MethodsPubMed, Embase, Medline and Web of Science were reviewed to identify relevant publications. Studies were selected if they examined the frequency of specialist palliative care referral and/or addressed issues surrounding access to palliative care services for patients with ILD.ResultsTen studies with a total of 4073 people with ILD, 27 caregivers and 18 healthcare professionals were selected and analysed. Frequency of palliative care referrals ranged from 0% to 38%. Delay in palliative care referrals and end-of-life decisions, patients’ fear of talking about the future, prognostic uncertainty and confusion about the roles of palliative care were identified as barriers to accessing palliative care services.ConclusionFurther research should concentrate on the early identification of patients who need specialist palliative care possibly with establishment of criteria to trigger referral ensuring that referrals are also based on patient’s needs.

scholarly journals A Ricoeur-Inspired Approach to Interpret Participant Observations and Interviews

2018 ◽  
Vol 5 ◽  
pp. 233339361880739 ◽  
Author(s):  
Charlotte Simonÿ ◽  
Kirsten Specht ◽  
Ingrid Charlotte Andersen ◽  
Kirsten Kjær Johansen ◽  
Charlotte Nielsen ◽  
...  
Keyword(s):  
Lived Experiences ◽  
Health Care Services ◽  
Nursing Science ◽  
Care Services ◽  
The World ◽  
Data Field ◽  
Field Notes ◽  
To Receive ◽  
Ways Of Being ◽  
Insight Into

In-depth knowledge of what it means to patients to receive health care services is crucial to the development of adequate protocols for nursing. Qualitative research allows us to gain important insight into what is experienced by and meaningful to patients. The French philosopher Paul Ricoeur’s thoughts have inspired qualitative researchers to conduct various forms of analysis and interpretation that increase our knowledge of ways of being-in-the-world. This article describes and discusses how a specific approach to derive in-depth knowledge of patients’ lived experiences can be taken. A combination of participant observations and interviews was used to generate data. Field notes and transcribed interviews were gathered as one collective text and analyzed and interpreted with inspiration from Ricoeur’s thoughts on narratives and interpretation. This approach is argued to be a significant way of developing in-depth knowledge of patients’ lived experiences. Such knowledge is important within nursing science.

scholarly journals Organizational and individual barriers and facilitators to the integration of pediatric palliative care for children: A grounded theory study

2021 ◽  
pp. 026921632110261
Author(s):  
Anat Laronne ◽  
Leeat Granek ◽  
Lori Wiener ◽  
Paula Feder-Bubis ◽  
Hana Golan
Keyword(s):  
Palliative Care ◽  
Grounded Theory ◽  
Healthcare Provider ◽  
Care Center ◽  
Healthcare Providers ◽  
Pediatric Palliative Care ◽  
Structured Interviews ◽  
Grounded Theory Method ◽  
Organizational Barriers ◽  
Provider Barriers

Background: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric oncology. A deeper understanding is needed of the influence of these barriers and the interactions between them, specifically in primary palliative care in hospital settings. Aim: To identify the organizational and healthcare provider barriers to the provision of primary pediatric palliative care. Design: This study utilized the grounded theory method. Semi-structured interviews were conducted and analyzed line by line, using NVivo software. Setting/participants: Forty-six pediatric oncologists, nurses, psychosocial team members, and other healthcare providers from six academic hospital centers participated in the research. Results: Organizational and healthcare provider factors were identified, each of which acted as both a barrier and facilitator to the provision of pediatric palliative care. Organizational barriers included lack of resources and management. Facilitators included external resources, resource management, and a palliative care center within the hospital. Individual barriers included attitudes toward palliative care among pediatric oncologists, pediatric oncologists’ personalities, and the emotional burden of providing palliative care. Facilitators include dedication and commitment, initiative, and sense of meaning. Provider facilitators for palliative care had a buffering effect on organizational barriers. Conclusion: Organizational and healthcare provider factors influence the quality and quantity of palliative care given to children and their families. This finding has implications on interventions structured to promote primary palliative care for children, especially in healthcare systems and situations where resources are limited.

Symptom distress and patterns of palliative-care referral among oncology outpatients.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 185-185
Author(s):  
Kaylan Christianer ◽  
Craig D Blinderman
Keyword(s):  
Palliative Care ◽  
Metastatic Disease ◽  
Tertiary Care ◽  
Symptom Burden ◽  
Symptom Distress ◽  
Care Hospital ◽  
Oncology Patients ◽  
Care Services ◽  
Edmonton Symptom Assessment Scale ◽  
Palliative Care Services

185 Background: The early implementation of palliative care services is recognized as an important aspect of oncologic care. However, rates of referral to palliative care services among oncology patients are still low, and the decision to refer is frequently at the discretion of the treating oncologist or by patient request. We sought to better identify the patterns of referral to outpatient palliative care, as well as patient symptom burden in an effort to target early and high-yield palliative care interventions. Methods: We conducted a cross-sectional survey among outpatients presenting to a Hematology/Oncology practice at a tertiary care hospital. Patients presenting to the clinic were asked to complete an Edmonton Symptom Assessment Scale (ESAS) survey at time of registration. Chart review was completed to identify basic demographic information, timing and extent of cancer diagnosis, basic medical and psychiatric comorbidities, and existing referral to palliative care services. Results: Between November 15, 2014 and December 24, 2014, a total of 146 complete surveys were collected from oncology outpatients. The most common malignancies were hematologic (40.4%), lung (24.6%), breast (8.2%), gastrointestinal (6.8%) and genitourinary (6.8%); 30.1% had metastatic disease at the time of the visit. A total of 13 patients (8.9%) were receiving outpatient palliative care services. As compared to patients not receiving palliative care services, those who were reported higher overall symptom distress scores (26.3 vs. 12.7, p = 0.013) and pain scores (3.5 vs. 1.6, p = 0.03). Patients receiving palliative care services also had fewer years since diagnosis (2.8 years vs. 4.5 years, p = 0.028), and a non-significant trend toward higher rates of metastatic disease (72.7% vs. 47.3%, p = 0.059). Conclusions: Overall, low rates of referrals to palliative care were found among oncology outpatients. In addition, this study suggests oncology patients are referred to palliative care at later stages of disease, when they are already experiencing significant symptom burden. Future research will determine which patients will benefit from earlier referrals to palliative care before symptoms become more advanced.

scholarly journals Trends and Racial Disparities of Palliative Care Use among Hospitalized Patients with ESKD on Dialysis

2019 ◽  
Vol 30 (9) ◽  
pp. 1687-1696 ◽  
Author(s):  
Yumeng Wen ◽  
Changchuan Jiang ◽  
Holly M. Koncicki ◽  
Carol R. Horowitz ◽  
Richard S. Cooper ◽  
...  
Keyword(s):  
Palliative Care ◽  
Racial Disparities ◽  
Ethnic Disparities ◽  
Symptom Burden ◽  
Inpatient Setting ◽  
Care Services ◽  
Palliative Care Consultation ◽  
Palliative Care Services ◽  
To Receive ◽  
White Patients

BackgroundStudy findings show that although palliative care decreases symptom burden, it is still underused in patients with ESKD. Little is known about disparity in use of palliative care services in such patients in the inpatient setting.MethodsTo investigate the use of palliative care consultation in patients with ESKD in the inpatient setting, we conducted a retrospective cohort study using the National Inpatient Sample from 2006 to 2014 to identify admitted patients with ESKD requiring maintenance dialysis. We compared palliative care use among minority groups (black, Hispanic, and Asian) and white patients, adjusting for patient and hospital variables.ResultsWe identified 5,230,865 hospitalizations of such patients from 2006 through 2014, of which 76,659 (1.5%) involved palliative care. The palliative care referral rate increased significantly, from 0.24% in 2006 to 2.70% in 2014 (P<0.01). Black and Hispanic patients were significantly less likely than white patients to receive palliative care services (adjusted odds ratio [aOR], 0.72; 95% confidence interval [95% CI], 0.61 to 0.84, P<0.01 for blacks and aOR, 0.46; 95% CI, 0.30 to 0.68, P<0.01 for Hispanics). These disparities spanned across all hospital subtypes, including those with higher proportions of minorities. Minority patients with lower socioeconomic status (lower level of income and nonprivate health insurance) were also less likely to receive palliative care.ConclusionsDespite a clear increase during the study period in provision of palliative care for inpatients with ESKD, significant racial disparities occurred and persisted across all hospital subtypes. Further investigation into causes of racial and ethnic disparities is necessary to improve access to palliative care services for the vulnerable ESKD population.

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