Advantages and challenges in using telehealth for home-based palliative care: A systematic mixed studies review protocol (Preprint)

BACKGROUND Due to the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients’ experiences of the advantages and challenges of telehealth for home-based palliative care. OBJECTIVE The aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients’ use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients. METHODS This article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data and assess methodological quality. The data will then be analyzed using thematic synthesis. RESULTS We described the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021. CONCLUSIONS Following the ethos of patient-centered palliative care, this systematic mixed studies review could contribute recommendations for practice and policy enabling the development of telehealth applications and services that align with patients’ preferences and needs when using telehealth applications and services at home.

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What does it take to deliver brilliant home-based palliative care? Using positive organisational scholarship and video reflexive ethnography to explore the complexities of palliative care at home

Palliative Medicine ◽

10.1177/0269216318807835 ◽

2018 ◽

Vol 33 (1) ◽

pp. 91-101 ◽

Cited By ~ 6

Author(s):

Aileen Collier ◽

Michael Hodgins ◽

Gregory Crawford ◽

Alice Every ◽

Kerrie Womsley ◽

...

Keyword(s):

Palliative Care ◽

Service Management ◽

Video Recording ◽

Care Services ◽

Home Based ◽

Palliative Care Services ◽

Care At Home ◽

Or Team ◽

Different Levels ◽

At Home

Background: Despite the increasing number of people requiring palliative care at home, there is limited evidence on how home-based palliative care is best practised. Aim: The aim of this participatory qualitative study is to determine the characteristics that contribute to brilliant home-based palliative care. Design: This study was inspired by the brilliance project – an initiative to explore how positive organisational scholarship in healthcare can be used to study brilliant health service management from the viewpoint of patients, families, and clinicians. The methodology of positive organisational scholarship in healthcare was combined with video-reflexive ethnography. Setting/participants: Home-based specialist palliative care services across two Australian states participated in the study. Clinicians were able to take part in the study at different levels. Pending their preference, this could involve video-recording of palliative care, facilitating and/or participating in reflexive sessions to analyse and critique the recordings, identifying the characteristics that contribute to brilliant home-based palliative care, and/or sharing the findings with others. Results: Brilliance in home-based palliative care is contingent on context and is conceptualised as a variety of actions, people, and processes. Care is more likely to be framed as brilliant when it is epitomised: anticipatory aptitude and action; a weave of commitment; flexible adaptability; and/or team capacity-building. Conclusion: This study is important because it verifies the characteristics of brilliant home-based palliative care. Furthermore, these characteristics can be adapted for use within other services.

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

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211012605 ◽

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.

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Harnessing New and Existing Virtual Platforms to Meet the Demand for Increased Inpatient Palliative Care Services During the COVID-19 Pandemic: A 5 Key Themes Literature Review of the Characteristics and Barriers of These Evolving Technologies

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211036698 ◽

2021 ◽

pp. 104990912110366

Author(s):

Holly R. Cherniwchan

Keyword(s):

Palliative Care ◽

Control Measures ◽

Inpatient Setting ◽

Overall Acceptability ◽

Care Services ◽

Infection Control Measures ◽

Home Based ◽

Palliative Care Services ◽

Virtual Services ◽

Case Basis

The COVID-19 pandemic has increased the demand for end-of-life services and bereavement support, and in many areas of the world, in-person palliative care is struggling to meet these needs. Local infection control measures result in limited visitation rights in hospital and patients are often dying alone. For many years, virtual platforms have been used as a validated alternative to in-person consults for outpatient and home-based palliative care; however, the feasibility and acceptability of a virtual inpatient equivalent is less studied. Virtual inpatient palliative care may offer a unique opportunity for patients to have meaningful interactions with their care team and family while isolated in hospital or in hospice. This narrative review examines strategies employed during the COVID-19 pandemic to implement virtual palliative care services in the inpatient setting. Five key themes were identified in the literature between January 2020-March 2021 in the LitCovid NCBI database: 1) overall acceptability of virtual inpatient palliative care during the pandemic, 2) important logistical considerations when developing a virtual inpatient palliative care platform, 3) commonly used technologies for delivering virtual services, 4) strategies for harnessing human resources to meet increased patient volume, and 5) challenges of virtual inpatient palliative care implementation. Upon review, telepalliative care can meet the increased demand for safe and accessible inpatient palliative care during a pandemic; however, in some circumstances in-person services should still be considered. The decision for which patients receive what format of care—in-person or virtual—should be decided on a case-by-case basis.

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FAMILY CAREGIVER SATISFACTION WITH HOME-BASED PALLIATIVE CARE SERVICES IN NORTH RHINE-WESTPHALIA, GERMANY

Central European Journal of Nursing and Midwifery ◽

10.15452/cejnm.2017.08.0025 ◽

2017 ◽

Vol 8 (4) ◽

pp. 723-730

Author(s):

Michael Galatsch ◽

Jian Li ◽

Friederike zu Sayn-Wittgenstein ◽

Wilfried Schnepp

Keyword(s):

Palliative Care ◽

Family Caregiver ◽

Caregiver Satisfaction ◽

Care Services ◽

Home Based ◽

Palliative Care Services

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Palliative Care in the Perinatal Setting

Oxford Textbook of Palliative Nursing ◽

10.1093/med/9780190862374.003.0062 ◽

2019 ◽

pp. 749-757

Author(s):

Cheryl Ann Thaxton ◽

Diana Jacobson ◽

Heather Murphy ◽

Tracey Whitley

Keyword(s):

Palliative Care ◽

Neonatal Intensive Care ◽

Psychological Symptom ◽

Culturally Competent ◽

Maternal Complications ◽

Patient Centered ◽

Care Services ◽

Nursing Communication ◽

The Family ◽

Palliative Care Services

The nurse is an essential interdisciplinary partner in the delivery of family- and patient-centered palliative care for families faced with perinatal or newborn loss in the labor and delivery (L&D) unit and in the neonatal intensive care unit (NICU). Early identification and referral of the family to perinatal and neonatal palliative care services is paramount. Improving nursing communication with the family, advocating for the family, and providing supportive nursing care, which includes physical and psychological symptom management, are emphasized. The L&D unit is an area in which patients can experience both joy and loss; it is imperative that L&D nurses receive education about palliative care in the event of maternal complications and/or congenital anomalies that lead to the death of a newborn. Principles of essential individualized, compassionate, and culturally competent palliative care interventions are reviewed using patient and family exemplars.

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Availability of home palliative care services and dying at home in conditions needing palliative care: A population-based death certificate study

Palliative Medicine ◽

10.1177/0269216319896517 ◽

2020 ◽

Vol 34 (4) ◽

pp. 504-512 ◽

Cited By ~ 1

Author(s):

Miharu Nakanishi ◽

Asao Ogawa ◽

Atsushi Nishida

Keyword(s):

Primary Care ◽

Palliative Care ◽

Primary Care Physicians ◽

Death Certificate ◽

Care Services ◽

Primary Care Services ◽

Hospital Beds ◽

Palliative Care Services ◽

Dying At Home ◽

At Home

Background: Avoiding inappropriate care transition and enabling people with chronic diseases to die at home have become important health policy issues. Availability of palliative home care services may be related to dying at home. Aim: After controlling for the presence of hospital beds and primary care physicians, we examined the association between availability of home palliative care services and dying at home in conditions requiring such services. Design: Death certificate data in Japan in 2016 were linked with regional healthcare statistics. Setting/participants: All adults (18 years or older) who died from conditions needing palliative care in 2016 in Japan were included. Results: There were 922,756 persons included for analysis. Malignant neoplasm (37.4%) accounted for most decedents, followed by heart disease including cerebrovascular disease (31.4%), respiratory disease (14.7%) and dementia/Alzheimer’s disease/senility (11.5%). Of decedents, 20.8% died at home or in a nursing home and 79.2% died outside home (hospital/geriatric intermediate care facility). Death at home was more likely in health regions with fewer hospital beds and more primary care physicians, in total and per condition needing palliative care. Number of home palliative care services was negatively associated with death at home. The adjustment for home palliative care services disappeared in heart disease including cerebrovascular disease and reversed in respiratory disease. Conclusion: Specialised home palliative care services may be suboptimal, and primary care services may serve as a key access point in providing baseline palliative care to people with conditions needing palliative care. Therefore, primary care services should aim to enhance their palliative care workforce.

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