scholarly journals Social support needs: Discordance between home hospice nurses and former family caregivers

2014 ◽  
Vol 13 (3) ◽  
pp. 465-472 ◽  
Author(s):  
Maija Reblin ◽  
Kristin G. Cloyes ◽  
Joan Carpenter ◽  
Patricia H. Berry ◽  
Margaret F. Clayton ◽  
...  
Keyword(s):  
Social Support ◽  
Family Caregivers ◽  
Hospice Care ◽  
Support Needs ◽  
Group Discussions ◽  
Hospice Nurses ◽  
Support Provision ◽  
Caregiver Needs ◽  
Home Hospice Care ◽  
Perception Of Support

AbstractObjective:The two goals of our study were to (1) identify which of five types of social support (Informational, Esteem, Emotional, Tangible, Belonging) are most cited by hospice nurses and family caregivers and (2) determine the match in perception of support needs.Method:As part of a larger multiphase project, focus groups were conducted with former family caregivers and hospice nurses to discuss their experiences of home hospice care and to gather their opinions on the important issues involved in that care. Transcripts of focus group discussions were coded for support type (Informational, Esteem, Emotional, Tangible, Belonging) based on definitions from the literature. Nurse and caregiver data were compared to assess for potential match.Results:Analysis of coded data suggested that nurses see different types of support to be needed in equal measure across their caseloads, while caregivers expressed priorities for some types of support. Illustrative examples of each type of support are provided and discussed.Significance of Results:Because matching support provided with the type of support desired has been linked to improved physical and psychological outcomes, it is important to focus on this match in healthcare populations particularly vulnerable to psychological stress, including family caregivers of home hospice patients. This research has implications for interventions to match support provision to caregiver needs, or for education for home hospice providers to ensure that they are not only sensitive to the possibility of a broad range of needs but also to the necessity to tailor care to those needs.

Social support needs: Discordance between home hospice nurses and former family caregivers

2013 ◽  
Author(s):  
Maija Reblin ◽  
Kristin Cloyes ◽  
Joan Carpenter ◽  
Pat Berry ◽  
Margaret Clayton ◽  
...  
Keyword(s):  
Social Support ◽  
Family Caregivers ◽  
Support Needs ◽  
Hospice Nurses

scholarly journals Reflections of Hospice Staff Members About Educating Hospice Family Caregivers Through Telenovela

2020 ◽  
Vol 38 (2) ◽  
pp. 161-168
Author(s):  
Dulce M. Cruz-Oliver ◽  
Martha Abshire ◽  
Chakra Budhathoki ◽  
Debra Parker Oliver ◽  
Angelo Volandes ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Thematic Analysis ◽  
Hospice Care ◽  
Hospice Nurses ◽  
Staff Members ◽  
Individual Interviews ◽  
Additional Information ◽  
Caregiver Needs ◽  
Patient Families ◽  
Video Education

Objective: Hospice family caregivers are seeking additional information related to patient care, pain and symptom management, and self-care. This study interviewed hospice staff about the potential dissemination of bilingual telenovelas to address these caregiver needs. Methods: Qualitative structured phone interviews were conducted with 22 hospice professionals from 17 different hospice organizations in 3 different Midwest states. The interviews were conducted from October to December 2019. Hospice staff volunteers were recruited from conferences, then individual interviews were audio-recorded, transcribed, and thematic analysis was conducted to gain an in-depth understanding of how to best implement telenovela video education into hospice care. Results: Most participants were hospice nurses (36%) located primarily in Missouri (91%), with a mean of 9 years of experience. Three discrete themes emerged, the educational resources currently provided to patient/families, perceptions of the usefulness of telenovelas for education, and practical suggestions regarding the dissemination of telenovelas. The development of 4 telenovela videos covering different topics is described. Conclusion: Hospice staff responded favorably to the concept of telenovelas and identified important keys for dissemination.

scholarly journals The Burden of Having to Wonder: Minority Stress Experiences of LGBTQ+ Hospice Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 357-357
Author(s):  
Kristin Cloyes ◽  
Miranda Jones ◽  
Marilisa Vega ◽  
Megan Hebdon ◽  
Casidee Thompson ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Minority Stress ◽  
Hospice Care ◽  
Background Level ◽  
Support Needs ◽  
Presentation Of Self ◽  
Home Setting ◽  
Stress Theory ◽  
Home Hospice Care

Abstract Home hospice care relies heavily on informal caregivers, often patients’ family and close others. Hospice family caregivers report stress, burden, and unmet support needs associated with poor health and bereavement outcomes. These outcomes are sensitive to the quality of interactions with professional hospice providers, especially for historically marginalized groups, yet little research examines experiences of LGBTQ+ hospice family caregivers. Informed by minority stress theory, we conducted in-depth interviews with LGBTQ+ home hospice family caregivers across the U.S. (N=20). Participants reported demographics and described their caregiving experiences including interactions with hospice providers. Interviews were audio-recorded, transcribed, and content-analyzed. Participants were mostly white (n=15, 75%), non-Hispanic (n=19, 95%), cisgender (n=19, 95%), gender binary (n=19, 95%), lesbian (n=10, 50%), women (n=12, 60%); average age was 52.3 (range 25-67, SD=13.84). Along with known end-of-life caregiving stressors, participants experienced minority stress that complicated caregiver-provider communication. Distal stressors included lack of LGBTQ+ competent resources, inadequate legal protections, providers’ assumptions about relationships, and difficult dynamics with unaccepting relatives. Proximal stressors included perceived risks of disclosure, expectation of poor treatment, feeling the need to modify presentation of self or home, and wondering whether negative provider interactions were due to being LGBTQ+. This generated a background level of uncertainty, caution, and concern that was particularly distressing in the home setting. Minority stress affects LGBTQ+ people across the lifespan and generates added burdens and support needs for hospice family caregivers. Providers who understand these effects are better positioned to deliver safe, effective care to all families at end of life.

scholarly journals Supporting home hospice family caregivers: Insights from different perspectives

2017 ◽  
Vol 16 (2) ◽  
pp. 209-219 ◽  
Author(s):  
Lee Ellington ◽  
Kristin G. Cloyes ◽  
Jiayun Xu ◽  
Lanell Bellury ◽  
Patricia H. Berry ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Hospice Care ◽  
Critical Role ◽  
Further Education ◽  
Hospice Nurses ◽  
Caregiver Support ◽  
Team Members ◽  
Expert Teaching ◽  
Family Centered ◽  
Thought Leaders

ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support.Method:Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups.Results:Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05).Significance of Results:Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

Abstract TP373: Advancing Stroke Recovery Through Social and Emotional Support

Stroke ◽  
2017 ◽  
Vol 48 (suppl_1) ◽  
Author(s):  
Mary Amatangelo ◽  
Janet Prvu Bettger ◽  
Karen J Collins ◽  
Barry Jackson ◽  
Elaine Miller ◽  
...  
Keyword(s):  
Social Support ◽  
Family Caregivers ◽  
Well Being ◽  
Stroke Survivor ◽  
Support Needs ◽  
Stroke Survivors ◽  
Caregiver Depression ◽  
Post Stroke ◽  
Post Stroke Depression ◽  
Health And Well Being

Background: Post-stroke disability often disrupts family roles and responsibilities. Role reversal, in combination with the disabilities, is emotionally taxing and physically fatiguing for both the stroke survivor and the family caregiver. Depression can result and when left undermanaged can lead to poor health outcomes. Research has shown social support is an important factor in recovery, post-stroke and caregiver depression. Studies have indicated high levels of social support are associated with faster functional recovery and more extensive recovery in stroke survivors. Also, that social support is independently associated with the presence and severity of post stroke depression and that positive social interaction is a significant contributor to variance in initial post stroke depression. Purpose: The purpose of this critical review was to examine the research literature on the relationships of social support and coping strategies with health-related outcomes among stroke survivors and their family caregivers. Methods: Twenty-five articles published between 2000 and 2016, identified by key terms related to stroke survivor and caregiver emotional and adjustment support needs, social support, depression and effective interventions, were reviewed. Results: We found overwhelming evidence that attention to stroke survivor and caregiver social network can advance recovery and improve the health and well being of both stroke survivors and caregivers. Knowledge gaps and focus on emotional and adjustment support needs are not being adequately met by community-based health services. This points to an important need for changes in practice to acclimate stroke survivors and their family caregivers to their new life roles, but also the need for more rigorous studies. Conclusions: In addition to more research, there is a critical need for changes in facilitating transitions of care to meet the emotional and adjustment needs in the stroke population. Encouraging health professionals to screen for social network presence and size and promoting support-seeking behavior may help advance recovery and improve the health and well being of stroke survivors and family caregivers.

Social Support Needs of Family Caregivers of Psychiatric Patients From Three Age Groups

1991 ◽  
Vol 40 (4) ◽  
pp. 208???213 ◽  
Author(s):  
JANE S. NORBECK ◽  
LINDA CHAFTEZ ◽  
HOLLY SKODOL-WILSON ◽  
SANDRA J. WEISS
Keyword(s):  
Social Support ◽  
Family Caregivers ◽  
Psychiatric Patients ◽  
Age Groups ◽  
Support Needs

scholarly journals Translation, cultural adaptation and validation of the Chinese version of the Carer Support Needs Assessment Tool for family caregivers of cancer patients receiving home-based hospice care

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Sijia Zhou ◽  
Qianqian Zhao ◽  
Huimin Weng ◽  
Ning Wang ◽  
Xia Wu ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Family Caregivers ◽  
Cultural Adaptation ◽  
Hospice Care ◽  
Assessment Tool ◽  
Face Validity ◽  
Support Needs ◽  
Home Based ◽  
Carer Support

Abstract Background Family caregivers need to be supported in caring for patients at the end of life, but practical tools to assess their support needs have been missing in China. So this study aimed to culturally adapt and validate the Carer Support Needs Assessment Tool (CSNAT). Methods Cross-cultural adaptation of the original CSNAT for a Chinese setting was performed according to Brislin’s translation guidelines. A pilot study was conducted with 15 Chinese family caregivers of cancer patients receiving hospice home care and 5 medical staff. A cross-sectional survey of 205 family caregivers was conducted from December 2018 to May 2019 at a home-based hospice care institute in Shenzhen, China. The validation procedure comprised the establishment of (1) content validity by a group of six experts; (2) face validity by 15 family caregivers; (3) criterion validity by calculating Spearman’s correlations between the CSNAT and caregiving burden, caregiving preparedness and quality of life scales; (4) internal consistency using Cronbach’s alpha. Results The CSNAT demonstrated good face validity and good content validity. CSNAT scores showed clear positive correlations with caregiving burden and negative correlations with preparedness for caregiving and quality of life. Internal consistency was high (Cronbach’s alpha = 0.899), although such reliability testing is not recommended for this tool. Conclusions The Chinese version of the CSNAT is a valid tool that is appropriate for identifying needs of family caregivers of cancer patients in home-based hospice care.

scholarly journals Perception of Reasons of Decision Making for Home Hospice, Benefits and Difficulties in Home Hospice Care by Family Caregivers

2019 ◽  
Vol 09 (10) ◽  
pp. 1013-1021
Author(s):  
Michiyo Ando ◽  
Hiroko Kukihara ◽  
Mayumi Yamamoto ◽  
Yasuyoshi Ninosaka ◽  
Naoyuki Saito
Keyword(s):  
Decision Making ◽  
Family Caregivers ◽  
Hospice Care ◽  
Home Hospice Care
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