scholarly journals Social and Health System Complexities Impacting on Decision-Making for Utilization of Oncology and Palliative Care in an African Context: A Qualitative Study

2019 ◽  
Vol 35 (3) ◽  
pp. 185-191 ◽  
Author(s):  
David A. Agom ◽  
Stuart Allen ◽  
Sarah Neill ◽  
Judith Sixsmith ◽  
Helen Poole ◽  
...  

Background: There is a dearth of research focusing on identifying the social complexities impacting on oncology and palliative care (PC), and no study has explored how the health-care system in Nigeria or other African contexts may be influencing utilization of these services. Aim: This study explored how social complexities and the organization of health-care influenced the decision-making process for the utilization of oncology and PC in a Nigerian hospital. Methods: This qualitative study used an interpretive descriptive design. Data were collected using semistructured interview guides with 40 participants, comprising health-care professionals, patients, and their families. Thematic analysis was conducted to generate and analyze patterns within the data. Findings: Three themes were identified: dysfunctional structural organization of the health-care delivery system, service-users’ economic status, and the influence of social networks. The interrelationship between the themes result in patients and their family members decisions either to present late to the hospital, miss their clinical appointments, or not to seek oncological health care and PC. Conclusion: This article offers insights into the role of the health-care system, as organized currently in Nigeria, as “autoinhibitory” and not adequately prepared to address the increasing burden of cancer. We therefore argue that there is a need to restructure the Nigerian health-care system to better meet the needs of patients with cancer and their families as failure to do so will strengthen the existing inequalities, discourage usage, and increase mortality.

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Nicole Luymes ◽  
Nicole Williams ◽  
Liz Garrison ◽  
Donna Goodridge ◽  
Maria Silveira ◽  
...  

Abstract Background Canadian palliative care (PC) philosophy seeks to support individuals in a person-centered and sensitive manner. Unfortunately, philosophy does not necessarily translate into practice and this divide may leave patients without appropriate care at the end of life, causing distress for some families. The primary goal of the study was to identify key factors affecting perceptions of quality PC from the perspective of informal caregivers and decision makers (e.g., program managers) and to understand how their experiences within the health care system may have influenced their perceptions. Methods Nine caregivers and 11 decision makers from Yukon Territory, British Columbia, Alberta, Ontario, & Nova Scotia shared their experiences in PC via interview or focus group. Audio recordings were transcribed verbatim and qualitatively analyzed for themes. Results Three themes emerged, including the Caregiver as Anchor, Bewildering System, and Patient, Caregiver, and Family-Centered Care. While these results resembled other studies on caregivers and individuals receiving PC, the present study also uncovered systemic concerns. There was agreement between the two participant groups across most subthemes, however only caregivers reported feelings of being trapped by the health care system and a general lack of respect from health care professionals. Additionally, caregivers stressed the importance of preserving some sort of normalcy in daily life despite the individual’s illness. Conclusions Caregivers are critical. The health care system expects them to help a great deal, but they often do not feel supported or respected and the system is lacking the capacity and resources to meet their needs while they are grieving loss and struggling to meet demands.


2009 ◽  
Vol 29 (4) ◽  
pp. 162-168
Author(s):  
AL Dewar ◽  
K Gregg ◽  
MI White ◽  
J Lander

A new framework is needed for patients with chronic pain and their primary care physicians that acknowledges the individual’s experiences and provides evidence-informed education and better linkages to community-based resources. This study describes the experience of 19 chronic-pain sufferers who seek relief via the health care system. Their experiences were recorded through in-depth semistructured interviews and analyzed through qualitative methods. The participants reported early optimism, then disillusionment, and finally acceptance of living with chronic pain. Both individuals with chronic pain and their health care professionals need evidence-informed resources and information on best practices to assist them to manage pain. Empathetic communication between health care professionals and individuals with chronic pain is crucial because insensitive communication negatively affects the individual, reduces treatment compliance and increases health care utilization.


2021 ◽  
pp. 1-10 ◽  
Author(s):  
Iris Wallenburg ◽  
Jan-Kees Helderman ◽  
Patrick Jeurissen ◽  
Roland Bal

Abstract The Covid-19 pandemic has put policy systems to the test. In this paper, we unmask the institutionalized resilience of the Dutch health care system to pandemic crisis. Building on logics of crisis decision-making and on the notion of ‘tact’, we reveal how the Dutch government initially succeeded in orchestrating collective action through aligning public health purposes and installing socio-economic policies to soften societal impact. However, when the crisis evolved into a more enduring one, a more contested policy arena emerged in which decision-makers had a hard time composing and defending a united decision-making strategy. Measures have become increasingly debated on all policy levels as well as among experts, and conflicts are widely covered in the Dutch media. With the 2021 elections ahead, this means an additional test of the resilience of the Dutch socio-political and health care systems.


Author(s):  
Lauren Russo ◽  
Karen Willis ◽  
Natasha Smallwood

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.


2014 ◽  
Vol 6 (2) ◽  
pp. 227-245
Author(s):  
Daniela Moşoiu

Abstract Persons suffering from chronic and life limiting illnesses often have unrelieved symptoms such as pain, depression, fatigue, and psychosocial and spiritual distress. In Romania they are frequently left in the care of their families with little support from the health care system. It seems a paradox that those who are the sickest persons in a country find little place in the health care system. This article presents palliative care as a solution to the suffering for these patients and their families by describing the concept, models of services, its beneficiaries and benefits and presenting the history of development of hospice and palliative care worldwide and in Romania.


2003 ◽  
Vol 31 (2) ◽  
pp. 213-221 ◽  
Author(s):  
Ruiping Fan

It is generally recognized that China, while attempting to develop modern scientific medicine in carrying out its national policy for modernization, has also made significant efforts to integrate traditional Chinese medicine into its health care system. For instance, the World Health Organization's first global strategy on traditional and alternative medicine (released in May 2002) lists China as one of only four of its member states to have attained an integrative health care system. However, medical integration can take many different forms and involve quite different health care standards. A health care standard is a set of mechanisms by which distinct diagnostic and therapeutic practices and products are validated or accredited for use in health care delivery. Traditional Chinese medicine and modern scientific medicine adopt different sets of such mechanisms and thereby engage different health care standards. Accordingly, in appraising the Chinese integrative health care system, it is important to investigate which health care standard has been appealed to.


2021 ◽  
Author(s):  
Rochelle D. Jones ◽  
Chris Krenz ◽  
Kent A. Griffith ◽  
Rebecca Spence ◽  
Angela R. Bradbury ◽  
...  

PURPOSE: Scholars have examined patients' attitudes toward secondary use of routinely collected clinical data for research and quality improvement. Evidence suggests that trust in health care organizations and physicians is critical. Less is known about experiences that shape trust and how they influence data sharing preferences. MATERIALS AND METHODS: To explore learning health care system (LHS) ethics, democratic deliberations were hosted from June 2017 to May 2018. A total of 217 patients with cancer participated in facilitated group discussion. Transcripts were coded independently. Finalized codes were organized into themes using interpretive description and thematic analysis. Two previous analyses reported on patient preferences for consent and data use; this final analysis focuses on the influence of personal lived experiences of the health care system, including interactions with providers and insurers, on trust and preferences for data sharing. RESULTS: Qualitative analysis identified four domains of patients' lived experiences raised in the context of the policy discussions: (1) the quality of care received, (2) the impact of health care costs, (3) the transparency and communication displayed by a provider or an insurer to the patient, and (4) the extent to which care coordination was hindered or facilitated by the interchange between a provider and an insurer. Patients discussed their trust in health care decision makers and their opinions about LHS data sharing. CONCLUSION: Additional resources, infrastructure, regulations, and practice innovations are needed to improve patients' experiences with and trust in the health care system. Those who seek to build LHSs may also need to consider improvement in other aspects of care delivery.


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