Barriers to home‐based palliative care in people with cancer: A qualitative study of the perspective of caregivers

Abstract Background Most French people (71%) would like to die at home, but only one out of four actually do. While the difficulties inherent in the practice of home-based palliative care are well described, few studies highlight the resources currently used by general practitioners (GPs) in real life. We have therefore sought to highlight the resources actually used by GPs providing home-based palliative care. Methods Twenty-one GPs of different ages and practice patterns agreed to participate to this qualitative study based upon semi-structured interviews. They were recruited according to a purposive sampling. Transcripts analysis was based upon General Inductive Analysis. Results The resources highlighted have been classified into two main categories according to whether they were internal or external to the GPs. The internal resources raised included the doctor’s practical experience and continuous medical education, personal history, work time organization and a tacit moral contract related to the referring GP’s position. External resources included resource personnel, regional assistance platforms and health facilities, legislation. Conclusion This study provides a simple list that is easy to share and pragmatic solutions for GPs and policymakers. Home-based palliative care practice can simultaneously be burdensome and yet a fulfilling, meaningful activity, depending on self-efficacy and professional exhaustion (burnout), perhaps to a greater extent than on medical knowledge. Home-based palliative care promotion is a matter of social responsibility. The availability of multidisciplinary teams such as regional assistance platforms and Hospitalization at Home is particularly important for the management of palliative care. Policymakers should consolidate these specific resources out of hospitals, in community settings where the patients wish to end their life.

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Loss of relationship: a qualitative study of families and healthcare providers after patient death and home-based palliative care ends

Annals of Palliative Medicine ◽

10.21037/apm.2019.03.01 ◽

2019 ◽

Vol 8 (2) ◽

pp. 130-139 ◽

Cited By ~ 1

Author(s):

Megan Vierhout ◽

Jaymie Varenbut ◽

Elizabeth Amos ◽

Sandy Buchman ◽

Amna Husain ◽

...

Keyword(s):

Palliative Care ◽

Qualitative Study ◽

Healthcare Providers ◽

Patient Death ◽

Home Based

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Experiences of Volunteers and Patient Satisfaction in Home Based Palliative Care, Puducherry, South India—A Descriptive Qualitative Study

Journal of Palliative Care ◽

10.1177/08258597211026400 ◽

2021 ◽

pp. 082585972110264

Author(s):

Sadhana Subramanian ◽

Sonali Sarkar ◽

Mathavaswami Vijayageetha ◽

S Adhinarayanan

Keyword(s):

Palliative Care ◽

Patient Satisfaction ◽

Qualitative Study ◽

Ageing Population ◽

Care Programme ◽

Care Services ◽

Home Based ◽

Palliative Care Services ◽

Palliative Care Programme ◽

Descriptive Qualitative

Context: Increasing burden of non-communicable diseases and ageing population has parallely increased the need for Palliative care. Unavailable, inaccessible, and inadequate palliative care services in our setting increased the need for volunteers. In Puducherry, palliative care programme was implemented through trained volunteers in 2015. Aims: To explore the experiences of volunteers who provide palliative care and also to get feedback on volunteering from the patients who received care. Settings and Design: A descriptive qualitative study was carried out at two Non-Governmental Organizations (NGO) working for palliative care in and around Puducherry. Methods and Material: Participants were selected purposively to include seven volunteers and eight patients to attain information saturation. The time period of this study was between September and October 2018. Analysis Used: Manual thematic analysis was done to identify codes, which were grouped to form categories and themes. Results: Factors that facilitated participants to take up the role of volunteers were witnessing the death of family members with unmet palliative care when required and experiences in organizations working for elderly and disabled children. Improvement in patients’ condition and patient satisfaction motivated them to continue, despite lack of resources and social support. Their perception was of having become bolder and empathetic by working as palliative care volunteers. Patients reported satisfaction with the provision of drugs and other materialistic support like clothes and sweets during festivals; however, their basic and financial needs remained unmet. Conclusion: The palliative care programme or the National programme for elderly should focus on components that would improve the quality of palliative care by reducing patients’ dissatisfaction. Support in terms of provision of drugs, financial help and nutrition is necessary to improve both the patients’ and volunteers’ satisfaction in palliative care services.

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The impact of home-based physical rehabilitation program on parents' experience with children in palliative care: a qualitative study

European Journal of Physical and Rehabilitation Medicine ◽

10.23736/s1973-9087.19.05474-1 ◽

2019 ◽

Vol 55 (4) ◽

Author(s):

Patricia Rico-Mena ◽

Domingo Palacios-Ceña ◽

Ricardo Martino-Alba ◽

Lourdes Chocarro-Gonzalez ◽

Javier Güeita-Rodríguez

Keyword(s):

Palliative Care ◽

Qualitative Study ◽

Rehabilitation Program ◽

Physical Rehabilitation ◽

Home Based ◽

The Impact

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Challenges Faced by Chinese Community Nurses When Providing Home-based Hospice and Palliative Care: a Descriptive Qualitative Study

10.21203/rs.3.rs-578121/v1 ◽

2021 ◽

Author(s):

Jinxin Zhang ◽

Yingjuan Cao ◽

Mingzhu Su ◽

Joyce Cheng ◽

Nengliang Yao

Keyword(s):

Palliative Care ◽

Health Service ◽

Qualitative Study ◽

Community Health ◽

Medical Personnel ◽

Community Health Service ◽

Future Research ◽

Home Based ◽

Hospice And Palliative Care ◽

Descriptive Qualitative

Abstract Background: Hospital facilities in China are experiencing increased strain on existing systems and medical resources, which necessitates the use of home-based hospice and palliative care (HBHPC). HBHPC primarily relies on community nurses and related medical personnel. Understanding the challenges that community nurses face when providing this form of care is urgently needed to optimize the design and delivery of HBHPC. Our study aimed to gain insight into community nurses’ challenges when providing HBHPC for patients.Methods: We performed a descriptive qualitative study with a phenomenology approach. Purposive sampling was used to recruit 13 nurses from two community health service centers in Jinan, Shandong Province, China. A thematic analysis was applied to identify themes from the transcribed data.Results: Three major themes emerged: 1) Community nurses’ inadequate self-preparation for providing HBHPC; 2) Patients and their families’ non-collaboration in HBHPC; 3) Community health service career disadvantages. Conclusion: Community nurses faced multifaceted challenges in home care settings. This study could provide a framework for guiding the improvement of interventional variables in the provision of HBHPC. Future research should involve developing effective methods of improving community nurses’ job motivation and community health service institutions’ incentive systems, as well as increasing advocacy around HBHPC.

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Experiences of caregivers in a home-based palliative care model – A qualitative study

Indian Journal of Palliative Care ◽

10.4103/ijpc.ijpc_154_19 ◽

2020 ◽

Vol 26 (3) ◽

pp. 306

Author(s):

Aneka Paul ◽

Elaine Fernandes

Keyword(s):

Palliative Care ◽

Qualitative Study ◽

Care Model ◽

Home Based

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

Innovation in Aging ◽

10.1093/geroni/igab046.633 ◽

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.

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