Determinants of primary and non‐primary informal care‐giving to home‐based palliative care cancer care‐recipients in Ontario, Canada

2021 ◽  
Author(s):  
Jiaoli Cai ◽  
Li Zhang ◽  
Denise Guerriere ◽  
Peter C. Coyte
Keyword(s):  
Palliative Care ◽  
Informal Care ◽  
Cancer Care ◽  
Care Recipients ◽  
Care Giving ◽  
Home Based

The determinants of the intensity of home-based informal care among cancer patients in receipt of home-based palliative care

2020 ◽  
pp. 026921632097927
Author(s):  
Jiaoli Cai ◽  
Li Zhang ◽  
Denise Guerriere ◽  
Peter C Coyte
Keyword(s):  
Palliative Care ◽  
Marital Status ◽  
Cancer Patients ◽  
Informal Care ◽  
Instrumental Variables ◽  
Spousal Caregivers ◽  
Living Alone ◽  
Policy Makers ◽  
Cohort Design ◽  
Home Based

Background: Understanding the determinants of the intensity of informal care may assist policy makers in the identification of supports for informal caregivers. Little is known about the utilization of informal care throughout the palliative care trajectory. Aim: The purpose of this study was to analyze the intensity and determinants of the use of informal care among cancer patients over the palliative care trajectory. Design: This was a longitudinal, prospective cohort design conducted in Canada. Regression analysis using instrumental variables was applied. Setting/participants: From November 2013 to August 2017, a total of 273 caregivers of cancer patients were interviewed biweekly over the course of the care recipient’s palliative care trajectory. The outcome was the number of hours of informal care provided by unpaid caregivers, that is, hours of informal care. Results: The number of hours of informal care increased as patients approached death. Home-based nursing care complemented, and hence, increased the provision of informal care. Patients living alone and caregivers who were employed were associated with the provision of fewer hours of informal care. Spousal caregivers provided more hours of informal care. Patient’s age, sex, and marital status, and caregiver’s age, sex, marital status, and education were associated with the number of hours of informal care. Conclusions: The intensity of informal care was determined by predisposing, enabling, and needs-based factors. This study provides a reference for the planning and targeting of supports for the provision of informal care.

The carer careers of son and daughter primary carers of their very old parents in Norway

2003 ◽  
Vol 23 (4) ◽  
pp. 471-485 ◽  
Author(s):  
TOR INGE ROMOREN
Keyword(s):  
Informal Care ◽  
Service Utilisation ◽  
Next Of Kin ◽  
Term Care ◽  
Older Parents ◽  
Formal Service ◽  
Care Givers ◽  
Care Recipients ◽  
Care Giving ◽  
Primary Care Giver

The purpose of this article is to analyse with longitudinal data from Norway the caring activities of sons and daughters who were the primary care-giver to a parent aged 80 or more years. The study sample consists of the 227 offspring care-givers in the Larvik study, which examined the illnesses and disabilities and the informal and formal care received until their deaths of all those aged 80 or more years in the town's population in 1981. Prospective and retrospective data were collected from that year about the health, functional losses and formal service utilisation of the older people. After the death of an older person in the study, the next-of-kin was interviewed about the informal care provided by relatives and friends during the same time span. The sequences and content of the care-giving activities differed little for son or daughter care-givers, except during a short escalation phase. The average duration of informal home care was shorter for sons than for daughters, primarily because a minority of the daughters had very long care-giving careers. The duration of the care recipients' stays in acute or long-term care institutions before death did not differ by the gender of the carer. Compared with many earlier studies, few gender differences in offspring care-giving activities were found. The findings suggest that the potential of sons to provide informal care to frail older parents is underestimated in modern societies.

scholarly journals Informal Care and Home-Based Palliative Care: The Health-Related Quality of Life of Carers

2010 ◽  
Vol 40 (1) ◽  
pp. 35-48 ◽  
Author(s):  
Patricia M. Kenny ◽  
Jane P. Hall ◽  
Siggi Zapart ◽  
Pauline R. Davis
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Informal Care ◽  
Health Related Quality ◽  
Home Based ◽  
Related Quality ◽  
Health Related

Caregiving at the end of life: Perspectives from spousal caregivers and care recipients

2007 ◽  
Vol 5 (1) ◽  
pp. 11-17 ◽  
Author(s):  
SUSAN JO ◽  
KEVIN BRAZIL ◽  
LYNNE LOHFELD ◽  
KATHLEEN WILLISON
Keyword(s):  
Palliative Care ◽  
Family Relationship ◽  
Home Care Services ◽  
Research Strategy ◽  
Spousal Caregivers ◽  
Care Recipient ◽  
Financial Strain ◽  
Care Services ◽  
Care Recipients ◽  
Home Based

Objective: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care.Methods: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience.Results: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care.Significance of results: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

Home-based palliative care in Sydney, Australia: the carer's perspective on the provision of informal care

2006 ◽  
Vol 0 (0) ◽  
pp. 061109020052007-??? ◽  
Author(s):  
Siggi Zapart ◽  
Patricia Kenny ◽  
Jane Hall ◽  
Betty Servis ◽  
Sharon Wiley
Keyword(s):  
Palliative Care ◽  
Informal Care ◽  
Home Based ◽  
Sydney Australia

Telemedicine in Cancer Care

2018 ◽  
pp. 540-545 ◽  
Author(s):  
S. Joseph Sirintrapun ◽  
Ana Maria Lopez
Keyword(s):  
Health Care ◽  
Access To Care ◽  
Cancer Care ◽  
Symptom Management ◽  
Lifestyle Modification ◽  
Clinical Settings ◽  
Home Based ◽  
Home Based Care ◽  
Care Costs ◽  
Improve Access

Telemedicine uses telecommunications technology as a tool to deliver health care to populations with limited access to care. Telemedicine has been tested in multiple clinical settings, demonstrating at least equivalency to in-person care and high levels of patient and health professional satisfaction. Teleoncology has been demonstrated to improve access to care and decrease health care costs. Teleconsultations may take place in a synchronous, asynchronous, or blended format. Examples of successful teleoncology applications include cancer telegenetics, bundling of cancer-related teleapplications, remote chemotherapy supervision, symptom management, survivorship care, palliative care, and approaches to increase access to cancer clinical trials. Telepathology is critical to cancer care and may be accomplished synchronously and asynchronously for both cytology and tissue diagnoses. Mobile applications support symptom management, lifestyle modification, and medication adherence as a tool for home-based care. Telemedicine can support the oncologist with access to interactive tele-education. Teleoncology practice should maintain in-person professional standards, including documentation integrated into the patient’s electronic health record. Telemedicine training is essential to facilitate rapport, maximize engagement, and conduct an accurate virtual exam. With the appropriate attachments, the only limitation to the virtual exam is palpation. The national telehealth resource centers can provide interested clinicians with the latest information on telemedicine reimbursement, parity, and practice. To experience the gains of teleoncology, appropriate training, education, as well as paying close attention to gaps, such as those inherent in the digital divide, are essential.

scholarly journals Evaluating Barriers and Opportunities in Delivering High-Quality Oncology Care in a Resource-Limited Setting Using a Comprehensive Needs Assessment Tool

2018 ◽  
pp. 1-9
Author(s):  
Chika R. Nwachukwu ◽  
Omobola Mudasiru ◽  
Lynn Million ◽  
Shruti Sheth ◽  
Hope Qamoos ◽  
...  
Keyword(s):  
Palliative Care ◽  
Needs Assessment ◽  
Cancer Care ◽  
Assessment Tool ◽  
Hospital Staff ◽  
Teaching Hospitals ◽  
High Quality ◽  
Middle Income ◽  
Quality Cancer Care ◽  
Oncology Care

Purpose Despite recognition of both the growing cancer burden in low- and middle-income countries and the disproportionately high mortality rates in these settings, delivery of high-quality cancer care remains a challenge. The disparities in cancer care outcomes for many geographic regions result from barriers that are likely complex and understudied. This study describes the development and use of a streamlined needs assessment questionnaire (NAQ) to understand the barriers to providing quality cancer care, identifies areas for improvement, and formulates recommendations for implementation. Methods Using a comprehensive NAQ, in-depth interviews were conducted with 17 hospital staff involved in cancer care at two teaching hospitals in Nigeria. Data were analyzed using content analysis and organized into a framework with preset codes and emergent codes, where applicable. Results Data from the interviews were organized into six broad themes: staff, stuff, system, space, lack of palliative care, and provider bias, with key barriers within themes including: financial, infrastructural, lack of awareness, limited human capacity resources, lack of palliative care, and provider perspective on patient-related barriers to cancer care. Specific solutions based on ability to reasonably implement were subcategorized into short-, medium-, and long-term goals. Conclusion This study provides a framework for a streamlined initial needs assessment and a unique discussion on the barriers to high-quality oncology care that are prevalent in resource-constrained settings. We report the feasibility of collecting and organizing data using a streamlined NAQ and provide a thorough and in-depth understanding of the challenges in this setting. Knowledge gained from the assessments will inform steps to improve oncology cancer in these settings.

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