scholarly journals ‘So isolation comes in, discrimination and you find many people dying quietly without any family support’: Accessing palliative care for key populations – an in-depth qualitative study

2019 ◽  
Vol 33 (6) ◽  
pp. 685-692 ◽  
Author(s):  
Jenny Hunt ◽  
Katherine Bristowe ◽  
Sybille Chidyamatare ◽  
Richard Harding
Keyword(s):  
Palliative Care ◽  
Civil Rights ◽  
Qualitative Study ◽  
Sex Workers ◽  
Quality Care ◽  
Healthcare Providers ◽  
Key Populations ◽  
Middle Income ◽  
Key Population ◽  
Palliative Care Services

Background: Ensuring palliative care for all under a new global health policy must include key populations, that is, lesbian, gay, bisexual, transgender and intersex (LGBTI) people, and sex workers. Accessibility and quality of care have not been investigated in lower and middle-income countries where civil rights are the weakest. Aim: To examine the accessibility to, and experiences of, palliative care for key populations in Zimbabwe. Design: Qualitative study using thematic analysis of in-depth interviews and focus groups. Setting/participants: A total of 60 key population adults and 12 healthcare providers and representatives of palliative care and key population support organisations were interviewed in four sites (Harare, Bulawayo, Mutare and Masvingo/Beitbridge). Results: Participants described unmet needs and barriers to accessing even basic elements of palliative care. Discrimination by healthcare providers was common, exacerbated by the politico-legal-economic environment. Two dominant themes emerged: (a) minimal understanding of, and negligible access to, palliative care significantly increased the risk of painful, undignified deaths and (b) discriminatory beliefs and practices from healthcare providers, family members and the community negatively affected those living with life-limiting illness, and their wishes at the end of life. Enacted stigma from healthcare providers was a potent obstacle to quality care. Conclusion: Discrimination from healthcare providers and lack of referrals to palliative care services increase the risk of morbidity, mortality and transmission of infectious diseases. Untreated conditions, exclusion from services, and minimal family and social support create unnecessary suffering. Public health programmes addressing other sexually taboo subjects may provide guidance.

scholarly journals Patient, Caregiver, and Physician Barriers to Home-Based Palliative Care: Findings From a Terminated Study

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 167-167
Author(s):  
Susan Enguidanos ◽  
Stephanie Wladkowski
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Qualitative Study ◽  
Primary Care Physicians ◽  
Controlled Trial ◽  
Healthcare Providers ◽  
Insurance Company ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Abstract Despite two decades of palliative care services, there remains numerous barriers to patient and caregiver use of palliative care. For many years, policymakers believed lack of funding for palliative care was the primary obstacle to accessing palliative care services. In 2017, we undertook a randomized controlled trial to test the effectiveness of a home-based palliative care (HBPC) program within accountable care organizations and in partnership with an insurance company that covered the cost of HBPC. After 20 months, we had recruited just 28 patients. This symposium will: (1) describe outcomes from various approaches undertaken to engage primary care physicians and recruit patients and their caregivers into this trial; (2) present barriers to HBPC referral identified from a qualitative study of primary care physicians; (3) present findings from a qualitative study of patient- and caregiver-identified barriers to HBPC; (4) describe physician and patient barriers to research participation; and (5) discuss implications of these findings for researchers and healthcare providers. Information presented in this symposium will inform researchers and policy makers about challenges and facilitators to recruiting patients, caregivers, and physicians to participate in research studies as well as inform healthcare practitioners of potential obstacles to increasing patient access to HBPC.

scholarly journals Reasons for Refusing Home-based Palliative Care: A Qualitative Study of Patients and Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 903-904
Author(s):  
Valeria Cardenas ◽  
YuJun Zhu ◽  
Anna Rahman ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Care Service ◽  
Controlled Trial ◽  
Healthcare Providers ◽  
Palliative Care Service ◽  
Health Condition ◽  
Insurance Company ◽  
Home Based ◽  
Palliative Care Services

Abstract Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that coverage for palliative care may be insufficient to expanding patient access to home-based palliative care. Research has yet to explore palliative care barriers from the perspective of palliative care-eligible patients and their caregivers. To identify patients and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers, we conducted a qualitative study using semi-structured individual interviews. Participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed via telephone. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the program explanation; and suggestions for improving messaging around home-based palliative care. Researchers used grounded theory to identify the themes within the transcripts. Two researchers independently coded the transcripts and then met to compare coding and reconciled discrepancies until 100% consensus was reached. Identified themes related to home-based palliative care referral barriers included reluctance to have home visits, timing, lack of palliative care knowledge, misconceptions of palliative care, and patients’ self-perceived health condition (not sick enough for palliative care). Themes related to recommendations for overcoming these barriers included preferring a palliative care referral from healthcare providers or from insurance company and clearer presentation of palliative care service. Findings reinforce the need for additional palliative care education among patients with serious illness and the importance of delivering the information from a trusted source.

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.

PATIENTS’ JOURNEY THROUGH INFLAMMATORY BOWEL DISEASE (IBD): A QUALITATIVE STUDY

2021 ◽  
Vol 27 (Supplement_1) ◽  
pp. S53-S54
Author(s):  
Tina Aswani Omprakash ◽  
Norelle Reilly ◽  
Jan Bhagwakar ◽  
Jeanette Carrell ◽  
Kristina Woodburn ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Qualitative Study ◽  
Patient Experience ◽  
Bowel Disease ◽  
Quality Care ◽  
Diagnostic Testing ◽  
Healthcare Providers ◽  
Indeterminate Colitis ◽  
Patient Journey ◽  
Inflammatory Bowel

Abstract Background Inflammatory bowel disease (IBD) is a debilitating intestinal condition, manifesting as Crohn’s disease (CD), ulcerative colitis (UC) or indeterminate colitis (IC). The patient experience is impacted by a lack of awareness from other stakeholders despite growing global disease prevalence. To gain deeper insight of the patient experience, promote quality care, and enhance quality of life, we performed a qualitative study of the patient journey starting from pre-diagnosis through treatment. Methods U.S. patients with IBD were recruited via UC/CD support groups and organizations, social media platforms, blog followers, and personal networks. Participants were screened via an emailed survey and asked to self-identify as medically diagnosed on the basis of reported diagnostic testing. Interviews were conducted by qualitative researchers by phone or web conferencing. Open-ended questions were developed to support and gather information about our learning objectives—primarily, our desire to understand the unique experiences of UC/CD patients in their journey from symptom onset through diagnosis, treatment and maintenance (e.g. “Upon diagnosis, what were your immediate thoughts about the condition?”). This qualitative data were analyzed using Human-Centered Design methodology, including patient typologies (personas), forced temporal zoom (journey maps), forced semantic zoom (stakeholder system mapping), and affinity mapping for pattern recognition of unmet needs. Results A total of 32 patients were interviewed: N=17 CD patients, N=13 UC patients and N=2 IC patients. The interviewed population reflected regional, demographic, and disease-related diversity (Table 1). Five unique, mutually exclusive journeys were identified to understand and classify patient experiences: (1) Journey of Independence, (2) Journey of Acceptance, (3) Journey of Recognition, (4) Journey of Passion and (5) Journey of Determination (Figure 1). Patients with IBD expressed a need for increased awareness, education, and training for providers to shorten the path to diagnosis. Mental health support was found to be a critical gap in care, particularly for major treatment decisions (e.g., surgery). The inclusion of emotional support into the treatment paradigm was perceived as essential to long-term wellness. Patient attitudes and self-advocacy varied on their individual journeys; understanding these journeys may accelerate time to diagnosis and treatment. Conclusion Better understanding of patient journeys can help healthcare providers improve their approach to patient care and coordination.

scholarly journals How to Integrate Palliative Care Within Primary Healthcare- Perspectives of People Living With Serious Illnesses, Their Family Caregivers and Primary Healthcare Professionals in Nigeria

2021 ◽  
Author(s):  
Oladayo A Afolabi ◽  
Kennedy Nkhoma ◽  
Olaitan Soyannwo ◽  
Akinyemi Aje ◽  
Adesola Ogunniyi ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Primary Healthcare ◽  
Healthcare Providers ◽  
Health Coverage ◽  
Middle Income ◽  
Healthcare Facilities ◽  
Care Integration ◽  
Qualitative Interview Study ◽  
Building Information

Abstract Background Palliative care should be integrated into primary healthcare systems within low- and middle-income countries to achieve Universal Health Coverage goals. We aimed to identify preferences and expectations for primary healthcare support among people living with serious illness and their families in Nigeria, and to determine feasible steps palliative care integration within the health system. Methods Qualitative interview study with 48 participants including people living with serious illnesses (n=21) and their family caregivers (n=15) recruited from specialist clinics at a Teaching hospital in Nigeria; and healthcare providers (n=12) recruited from three primary healthcare facilities in Nigeria. Data were analysed using thematic analysis. Results Three major themes were identified. 1) Balancing patients and families’ expectations and preferences for easily accessible service and opportunities for social interaction and adequate communication with available human resource. 2) Engaging patients requires existing trust and bonds from their current use of primary healthcare and support to develop patients’ agency. 3) Development of healthcare providers is needed to ensure an appropriate clinical response, manage interprofessional trust and ensure clear role delineation. Conclusions Palliative care integration within primary healthcare in Nigeria can be achieved through building information and communication skills of healthcare providers, engaging and empowering patients to exercise their agency in care decisions, and adequately delineating healthcare providers’ roles to ensure staff work within their competencies and training.

scholarly journals Unraveling PBF effects beyond impact evaluation: results from a qualitative study in Cameroon

2018 ◽  
Vol 3 (2) ◽  
pp. e000693 ◽  
Author(s):  
Manuela De Allegri ◽  
Maria Paola Bertone ◽  
Shannon McMahon ◽  
Idrissou Mounpe Chare ◽  
Paul Jacob Robyn
Keyword(s):  
Qualitative Study ◽  
Health System ◽  
Low Income ◽  
Impact Evaluation ◽  
Healthcare Providers ◽  
Analytical Techniques ◽  
Demand Side ◽  
Middle Income ◽  
Implementation Processes ◽  
Heterogeneous Effects

IntroductionPerformance-based financing (PBF) has acquired increased prominence as a means of reforming health system purchasing structures in low-income and middle-income countries. A number of impact evaluations have noted that PBF often produces mixed and heterogeneous effects. Still, little systematic effort has been channelled towards understanding what causes such heterogeneity, including looking more closely at implementation processes.MethodsOur qualitative study aimed at closing this gap in knowledge by attempting to unpack the mixed and heterogeneous effects detected by the PBF impact evaluation in Cameroon to inform further implementation as the country scales up the PBF approach. We collected data at all levels of the health system (national, district, facility) and at the community level, using a mixture of in-depth interviews and focus group discussions. We combined deductive and inductive analytical techniques and applied analyst triangulation.ResultsOur findings indicate that heterogeneity in effects across facilities could be explained by pre-existing infrastructural weaknesses coupled with rigid administrative processes and implementation challenges, while heterogeneity across indicators could be explained by providers’ practices, privileging services where demand-side barriers were less substantive.ConclusionIn light of the country’s commitment to scaling up PBF, it follows that substantial efforts (particularly entrusting facilities with more financial autonomy) should be made to overcome infrastructural and demand-side barriers and to smooth implementation processes, thus, enabling healthcare providers to use PBF resources and management models to a fuller potential.

scholarly journals Duration of palliative care before death in international routine practice: a systematic review and meta-analysis

BMC Medicine ◽  
2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Roberta I. Jordan ◽  
Matthew J. Allsop ◽  
Yousuf ElMokhallalati ◽  
Catriona E. Jackson ◽  
Helen L. Edwards ◽  
...  
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
English Language ◽  
Meta Analysis ◽  
Service Evaluation ◽  
Research Literature ◽  
Cochrane Library ◽  
Routine Practice ◽  
Middle Income ◽  
Palliative Care Services

Abstract Background Early provision of palliative care, at least 3–4 months before death, can improve patient quality of life and reduce burdensome treatments and financial costs. However, there is wide variation in the duration of palliative care received before death reported across the research literature. This study aims to determine the duration of time from initiation of palliative care to death for adults receiving palliative care across the international literature. Methods We conducted a systematic review and meta-analysis that was registered with PROSPERO (CRD42018094718). Six databases were searched for articles published between Jan 1, 2013, and Dec 31, 2018: MEDLINE, Embase, CINAHL, Global Health, Web of Science and The Cochrane Library, as well undertaking citation list searches. Following PRISMA guidelines, articles were screened using inclusion (any study design reporting duration from initiation to death in adults palliative care services) and exclusion (paediatric/non-English language studies, trials influencing the timing of palliative care) criteria. Quality appraisal was completed using Hawker’s criteria and the main outcome was the duration of palliative care (median/mean days from initiation to death). Results One hundred sixty-nine studies from 23 countries were included, involving 11,996,479 patients. Prior to death, the median duration from initiation of palliative care to death was 18.9 days (IQR 0.1), weighted by the number of participants. Significant differences between duration were found by disease type (15 days for cancer vs 6 days for non-cancer conditions), service type (19 days for specialist palliative care unit, 20 days for community/home care, and 6 days for general hospital ward) and development index of countries (18.91 days for very high development vs 34 days for all other levels of development). Forty-three per cent of studies were rated as ‘good’ quality. Limitations include a preponderance of data from high-income countries, with unclear implications for low- and middle-income countries. Conclusions Duration of palliative care is much shorter than the 3–4 months of input by a multidisciplinary team necessary in order for the full benefits of palliative care to be realised. Furthermore, the findings highlight inequity in access across patient, service and country characteristics. We welcome more consistent terminology and methodology in the assessment of duration of palliative care from all countries, alongside increased reporting from less-developed settings, to inform benchmarking, service evaluation and quality improvement.

scholarly journals How does performance-based financing affect the availability of essential medicines in Cameroon? A qualitative study

2019 ◽  
Vol 34 (Supplement_3) ◽  
pp. iii4-iii19 ◽  
Author(s):  
Isidore Sieleunou ◽  
Anne-Marie Turcotte-Tremblay ◽  
Manuela De Allegri ◽  
Jean-Claude Taptué Fotso ◽  
Habakkuk Azinyui Yumo ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Health Services ◽  
Healthcare Providers ◽  
Study Data ◽  
Essential Medicines ◽  
Middle Income ◽  
Middle Income Countries ◽  
Performance Based Financing ◽  
Low And Middle Income

Abstract Performance-based financing (PBF) is being implemented across low- and middle-income countries to improve the availability and quality of health services, including medicines. Although a few studies have examined the effects of PBF on the availability of essential medicines (EMs) in low- and middle-income countries, there is limited knowledge of the mechanisms underlying these effects. Our research aimed to explore how PBF in Cameroon influenced the availability of EMs, and to understand the pathways leading to the experiential dimension related with the observed changes. The design was an exploratory qualitative study. Data were collected through in-depth interviews, using semi-structured questionnaires. Key informants were selected using purposive sampling. The respondents (n = 55) included health services managers, healthcare providers, health authorities, regional drugs store managers and community members. All interviews were recorded, transcribed and analysed using qualitative data analysis software. Thematic analysis was performed. Our findings suggest that the PBF programme improved the perceived availability of EMs in three regions in Cameroon. The change in availability of EMs experienced by stakeholders resulted from several pathways, including the greater autonomy of facilities, the enforced regulation from the district medical team, the greater accountability of the pharmacy attendant and supply system liberalization. However, a sequence of challenges, including delays in PBF payments, limited autonomy, lack of leadership and contextual factors such as remoteness or difficulty in access, was perceived to hinder the capacity to yield optimal changes, resulting in heterogeneity in performance between health facilities. The participants raised concerns regarding the quality control of drugs, the inequalities between facilities and the fragmentation of the drug management system. The study highlights that some specific dimensions of PBF, such as pharmacy autonomy and the liberalization of drugs supply systems, need to be supported by equity interventions, reinforced regulation and measures to ensure the quality of drugs at all levels.

scholarly journals Palliative care services for cancer patients in Nepal, a lower-middle-income country

2021 ◽  
Vol 15 ◽  
pp. 263235242110211
Author(s):  
Deepa Gautam ◽  
Sudhir Adhikari
Keyword(s):  
Palliative Care ◽  
Human Resource Development ◽  
Capital City ◽  
National Guidelines ◽  
Optimal Care ◽  
Middle Income ◽  
Care Services ◽  
Non Governmental Organizations ◽  
Palliative Care Services ◽  
Difficult Terrain

With the rise in cancer burden, need for palliative care services has increased simultaneously and majority of people requiring services are from low- and middle-income countries where palliative care is in primitive stage. Nepal is also facing similar challenges of dealing with cancer care and end-of-life care. From its initiation in the early 1990s, there has been gradual progress in the development of palliative care with joint effort of government as well as non-governmental organizations. Morphine, a major milestone for pain management, is being manufactured in the country for nearly a decade, yet morphine equivalence mg per capita is far below the global average. Currently, Nepal has been placed under ‘Category 3a’ with isolated care provision and there are a lot of challenges to overcome to improve the existing services. Majority of hospice and palliative care centres are located in the capital city and only a few in the periphery. Scarcity of treatment centres and expertise, limited finances, lack of awareness among patients and health care workers, and difficult terrain are major barriers for optimal care. Proper implementation of national guidelines, human resource development and integration of palliative care to primary healthcare level would be crucial steps for further improvement.

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