scholarly journals The meaning and experience of bereavement support: A qualitative interview study of bereaved family caregivers

2017 ◽  
Vol 16 (4) ◽  
pp. 396-405 ◽  
Author(s):  
Emma Kirby ◽  
Katherine Kenny ◽  
Alex Broom ◽  
John MacArtney ◽  
Phillip Good
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Bereavement Support ◽  
Care Services ◽  
Qualitative Interview Study ◽  
Framework Approach ◽  
Metropolitan Hospital ◽  
Palliative Care Services ◽  
Socially Isolated ◽  
Bereaved Family

ABSTRACTObjective:Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some—though not all—caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support.Method:This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3–9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed.Results:The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the “personal” character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support.Significance of results:Systematic pre-bereavement planning and careful communication about the services offered by palliative care bereavement support centers may improve receipt of support among bereaved family caregivers in need.

Building Community Capacity in Bereavement Support

2016 ◽  
Vol 34 (3) ◽  
pp. 275-281 ◽  
Author(s):  
Lauren J. Breen ◽  
Samar M. Aoun ◽  
Bruce Rumbold ◽  
Beverley McNamara ◽  
Denise A. Howting ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Community Education ◽  
Community Capacity ◽  
Bereavement Support ◽  
Care Services ◽  
Palliative Care Services ◽  
Building Community ◽  
Open Content ◽  
Bereaved Family

Background: Most bereaved people do not require specialist intervention, yet building community capacity in providing bereavement support is underdeveloped. While family caregivers indicate a need for more information about bereavement, there is little evidence to guide what this information might contain. Objective: The study’s purpose was to inform bereavement support by determining the advice people bereaved through expected deaths in palliative care have for others in that situation. Design: Four funeral providers posted a questionnaire to previous clients who had used their services 6 to 24 months prior and 678 bereaved people responded. Setting/Participants: The sample size for this study comprised 265 bereaved people whose relative used palliative care services. Measurements: The questionnaire comprised 82 questions about caregiving, bereavement support, current bereavement-related distress, and 2 open-ended questions concerning their bereavement, one of them on advice they have to other people in the same situation. Results: Family caregivers (n = 140) of people who received palliative care responded to the open-ended question about advice for others. An open content analysis yielded 3 themes—preparations for bereavement, utilizing social networks, and strategies for dealing with grief. Conclusions: Bereaved family caregivers’ experiential knowledge can be harnessed to progress the development of bereavement care strategies for the good of the community. These responses could be incorporated into information brochures, posters, and other community education avenues in order to upskill palliative care bereavement volunteers and the wider community so that bereaved family caregivers are best supported.

Understanding the needs of family caregivers of older adults dying with dementia

2013 ◽  
Vol 12 (3) ◽  
pp. 223-231 ◽  
Author(s):  
Genevieve N. Thompson ◽  
Kerstin Roger
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Terminal Illness ◽  
English Language ◽  
Psychological Needs ◽  
Support Needs ◽  
Care Services ◽  
Unique Nature ◽  
Palliative Care Services ◽  
Services And Supports

AbstractObjectives:A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services.Methods:A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011.Results:Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers.Significance of results:Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.

Looking Through the Lens of Receptivity and Its Role in Bereavement Support

2016 ◽  
Vol 33 (10) ◽  
pp. 989-995 ◽  
Author(s):  
Pippa Blackburn ◽  
Pam McGrath ◽  
Caroline Bulsara
Keyword(s):  
Palliative Care ◽  
Rural Areas ◽  
Critical Factor ◽  
Support Programs ◽  
Bereavement Support ◽  
Remote Locations ◽  
Care Services ◽  
Starting Point ◽  
Palliative Care Services

Receptivity is a new concept within the area of scholarship on bereavement. There is a dearth of research that specifically focuses on individuals’ receptivity in relation to bereavement support. This is particularly the case within the context of rural, regional, and remote locations. There is also a noticeable absence in the literature on bereavement support to Aboriginal families. Understanding receptivity in relation to bereavement in rural areas is important, particularly as bereavement support is an important area of service to the community by palliative care services. Receptivity to bereavement services has been identified as a critical factor in participation in bereavement support programs. This review provides a starting point by outlining the present literature on receptivity and bereavement.

scholarly journals Strategies for introducing outpatient specialty palliative care in gynecologic oncology.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 111-111
Author(s):  
Casey M. Hay ◽  
Carolyn Lefkowits ◽  
Marie Bakitas ◽  
Megan Crowley-Makota ◽  
Renata Urban ◽  
...  
Keyword(s):  
Palliative Care ◽  
Symptom Control ◽  
Gynecologic Oncology ◽  
Relationship Building ◽  
Future Research ◽  
Patient Anxiety ◽  
Telephone Interviews ◽  
Care Services ◽  
Qualitative Interview Study ◽  
Palliative Care Services

111 Background: Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well-described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. Methods: We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semi-structured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Results: Mean participant age was 47 years (± 10). Mean interview length was 25 minutes (± 7). Gynecologic oncologists described three main strategies for introducing outpatient specialty palliative care: first establish a strong primary relationship and trust with patients in order to alleviate fear and increase acceptance of referral; focus initial palliative care referral on symptom control to gain a “foot in the door”, facilitate early relationship-building with palliative care clinicians, and dissociate palliative care from end-of-life; and normalize and explain palliative care referral to decrease patient anxiety and confusion. These strategies aimed to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Conclusions: Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. Future research should examine patient perception of these strategies and assess impact on rates of acceptance of outpatient specialty palliative care referral.

scholarly journals What do family caregivers know about palliative care? Results from a national survey

2019 ◽  
Vol 17 (6) ◽  
pp. 643-649 ◽  
Author(s):  
J. Nicholas Dionne-Odom ◽  
Katherine A. Ornstein ◽  
Erin E. Kent
Keyword(s):  
Palliative Care ◽  
Chronic Illness ◽  
Family Caregivers ◽  
Hospice Care ◽  
Care Services ◽  
Palliative Care Services ◽  
Level Of Knowledge ◽  
National Trends ◽  
Behavioral Disability ◽  
Family Centered

AbstractObjectiveDespite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.MethodUsing the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term “palliative care” and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., “Palliative care is the same as hospice”).ResultMore than one-half of caregivers (55%) had “never heard” of palliative care; 19.2% knew what palliative care was and “could explain it to someone else.” In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% “strongly” or “somewhat” agreed that “Palliative care is the same as hospice”; another 10.5% “didn't know.” Similarly, 40% reported that “When I think of palliative care, I automatically think of death.”Significance of resultsOne-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.

scholarly journals Strategies for Introducing Outpatient Specialty Palliative Care in Gynecologic Oncology

2017 ◽  
Vol 13 (9) ◽  
pp. e712-e720 ◽  
Author(s):  
Casey M. Hay ◽  
Carolyn Lefkowits ◽  
Megan Crowley-Matoka ◽  
Marie A. Bakitas ◽  
Leslie H. Clark ◽  
...  
Keyword(s):  
Palliative Care ◽  
Standard Deviation ◽  
Best Practice ◽  
Gynecologic Oncology ◽  
Relationship Building ◽  
Physician Patient Relationship ◽  
Telephone Interviews ◽  
Care Services ◽  
Qualitative Interview Study ◽  
Palliative Care Services

Purpose: Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. Methods: We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semistructured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Results: Mean participant age was 47 years (standard deviation, 10 years). Mean interview length was 25 minutes (standard deviation, 7 minutes). Gynecologic oncologists described the following three main strategies for introducing outpatient specialty palliative care: focus initial palliative care referral on symptom management to dissociate palliative care from end-of-life care and facilitate early relationship building with palliative care clinicians; use a strong physician-patient relationship and patient trust to increase acceptance of referral; and explain and normalize palliative care referral to address negative associations and decrease patient fear of abandonment. These strategies aim to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Conclusion: Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. These strategies provide groundwork for developing system-wide best practice approaches to the presentation of palliative care referral.

“You either need help…you feel you don't need help…or you don't feel worthy of asking for it:” Receptivity to bereavement support

2018 ◽  
Vol 17 (2) ◽  
pp. 172-185 ◽  
Author(s):  
Pippa Blackburn ◽  
Caroline Bulsara
Keyword(s):  
Palliative Care ◽  
Western Australia ◽  
Health Professionals ◽  
Psychosocial Support ◽  
Critical Factor ◽  
Aboriginal Health ◽  
Bereavement Support ◽  
Care Services ◽  
Provider Perspectives ◽  
Palliative Care Services

AbstractObjectiveAlthough the needs of the bereaved have been identified widely in the literature, how these needs translate into meaningful, appropriate, and client-centered programs needs further exploration. The application of receptivity to support is a critical factor in participation by the bereaved in palliative care bereavement programs. Receptivity is a complex multifactorial phenomenon influenced by internal and external factors that ultimately influences engagement in psychosocial support in bereavement. This study explored factors that influence receptivity to bereavement support from palliative care services in rural, regional, and remote Western Australia.MethodThe study comprised a qualitative descriptive research design using semistructured interviews with 24 bereaved individuals, nine palliative care health professionals, and four Aboriginal Health Professionals. Participants were recruited via palliative care services in country Western Australia. Interviews were transcribed verbatim and thematically analyzed.ResultFindings revealed that a range of individual, social, and geographical factors influence receptivity to bereavement support and can impact on utilization of bereavement support services.Significance of resultsReceptivity provides a frame of reference to enhance understanding of factors influencing engagement in psychosocial support in bereavement. Receptivity promotes a shift of service provider perspectives of effective supportive care to consumer-centric reasons for engagement.

Survey of bereavement support provided by Australian palliative care services

2008 ◽  
Vol 188 (4) ◽  
pp. 228-230 ◽  
Author(s):  
Mark A Mather ◽  
Phillip D Good ◽  
John D Cavenagh ◽  
Peter J Ravenscroft
Keyword(s):  
Palliative Care ◽  
Bereavement Support ◽  
Care Services ◽  
Palliative Care Services

Family caregivers voice their needs: A photovoice study

2014 ◽  
Vol 13 (3) ◽  
pp. 701-712 ◽  
Author(s):  
Jennifer Angelo ◽  
Richard Egan
Keyword(s):  
Palliative Care ◽  
Family Member ◽  
Family Caregivers ◽  
Health Professionals ◽  
Medication Management ◽  
Physical Demands ◽  
Care Services ◽  
Palliative Care Services ◽  
Care Health ◽  
Photovoice Methodology

AbstractObjective:Caregivers often are unprepared for their role yet serve as the frontline in the provision of palliative care services. The aim of our study was to explore family caregivers' experiences from their perspective as they cared for dying relatives.Method:Using the Photovoice methodology, ten unpaid family caregivers took photographs depicting issues they experienced as informal caregivers of an ill family member who had less than a year to live. Each participant met with the first author individually four to six times and explained their role as caregiver through photographs and stories.Results:The results were clustered into seven themes: physical demands, emotional/spiritual stress, preparing for the future, securing help, medication management, navigating the agencies, and relationships.Significance of results:Caregivers perform a variety of tasks, often under stress. This study highlights the main areas where problems lie and the areas that palliative care health professionals need to be aware of so they can assist and educate caregivers, with the goal of finding solutions to the burdens of care. The themes were found to be intertwined, showing the complexity of the caregiving role.

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