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 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.

Family Caregivers’ Confidence Caring for Relatives in Hospice Care at Home: An Exploratory Qualitative Study

2018 ◽  
Vol 35 (12) ◽  
pp. 1540-1546 ◽  
Author(s):  
Jacek T. Soroka ◽  
Katherine Froggatt ◽  
Sara Morris
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Care Staff ◽  
Life Care ◽  
Cross Sectional ◽  
Home Setting ◽  
Care At Home ◽  
At Home

Objectives: Although the experiences of family caregivers have received attention, little research has specifically explored caregivers’ confidence. Evidence shows that caregivers of hospice patients do not feel confident or prepared to care for relatives or friends who die at home. Aim: We aimed to elicit the views, feelings, and experiences of primary caregivers who provide unpaid care to dying family members in the home setting to better understand what contributes to their confidence during end-of-life care. Design: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis that focused on form and content was chosen to analyze the data. Participants: Sixteen bereaved caregivers (14 individuals and 1 brother/sister dyad) from the midwestern United States who received support from 1 hospice participated in the study. Results: Four storylines running longitudinally through the interviews were identified as shaping, giving meaning to, and contextualizing caregivers’ confidence: values/relationships, stories of terminal illness, needs, and support. Caregivers’ confidence is shaped by the terminal illness of the person for whom they care and caregivers’ values and relationships. It is also influenced by their needs and the sources and strength of support they receive. Conclusions: This research developed understanding about family provision of end-of-life care at home. Better comprehension of caregivers’ experiences can help professional hospice and palliative care staff to understand what aids caregivers to be more confident.

scholarly journals “It’s Like a Death Sentence but It Really Isn’t” What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

2019 ◽  
Vol 37 (9) ◽  
pp. 721-727
Author(s):  
Channing E. Tate ◽  
Grace Venechuk ◽  
Elinor J. Brereton ◽  
Pilar Ingle ◽  
Larry A. Allen ◽  
...  
Keyword(s):  
Focus Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Terminal Illness ◽  
Hospice Care ◽  
Death Sentence ◽  
Theory Approach ◽  
Snowball Sampling ◽  
The Right ◽  
Grounded Theory Approach

Background: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making. Objectives: To understand the decisional needs of patients and families making decisions about hospice care. Methods: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for? Discussion: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients’ and families’ understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.

A prospective study: Hypodermoclysis performed by caregivers in the home setting.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 128-128 ◽  
Author(s):  
Marieberta Vidal ◽  
David Hui ◽  
Janet L. Williams ◽  
Gary B. Chisholm ◽  
Julio Allo ◽  
...  
Keyword(s):  
End Of Life ◽  
Hospice Care ◽  
Training Session ◽  
Oral Intake ◽  
Home Setting ◽  
Site Evaluation ◽  
Preliminary Study ◽  
A Prospective Study ◽  
Trained Nurse ◽  
At Home

128 Background: Decreased oral intake is very common at the end of life. Dehydration can aggravate symptoms like fatigue, myoclonus, and confusion. Intravenous (iv) hydration at home can be uncomfortable and expensive. Hypodermoclysis (HDC) is a comfortable and inexpensive but rarely used way to provide hydration at the end of life in the home setting. The purpose of this study was to evaluate a program of HDC at home by the caregivers. Methods: All caregivers underwent a 45 minute training session on HDC administration and assessment of infusion site delivered by a specially trained nurse. Caregivers received daily calls and on site evaluation on day 8. Results: A total of 21 patient/caregivers dyads were admitted to this preliminary study: 10 (47%) female patients and 16 (76%) female caregivers. All patients had advanced cancer receiving hospice care at home. All caregivers who received training were able to start the infusion. Side effects were minimal with 1 (5%) care of the needle difficulty and leakage. Conclusions: This preliminary study suggests that subcutaneous hydration can be administered by caregivers at home with minimal burden. It can be easily done by just gravity or weight. It will avoid the use of expensive iv pump devices or need of special technical support. [Table: see text]

scholarly journals Profiles of family caregivers of patients at the end of life at home: a Q-methodological study into family caregiver’ support needs

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Femmy M. Bijnsdorp ◽  
H. Roeline W. Pasman ◽  
Cécile R. L. Boot ◽  
Susanne M. van Hooft ◽  
AnneLoes van Staa ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Support Needs ◽  
Methodological Study ◽  
Caregiver Support ◽  
At Home

Preference of place for end-of-life cancer care and death among bereaved Japanese families who experienced home hospice care and death of a loved one

2009 ◽  
Vol 18 (11) ◽  
pp. 1445-1453 ◽  
Author(s):  
JiEun Choi ◽  
Mitsunori Miyashita ◽  
Kei Hirai ◽  
Kazuki Sato ◽  
Tatsuya Morita ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Care ◽  
Hospice Care ◽  
Loved One ◽  
Home Hospice Care

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

Caregiver Challenges Seen From the Perspective of Certified Home Hospice Medical Directors

2021 ◽  
pp. 104990912110563
Author(s):  
Ankita Agarwal ◽  
Sulaiman Alshakhs ◽  
Elizabeth Luth ◽  
Ritchell Dignam ◽  
Manney C. Reid ◽  
...  
Keyword(s):  
Hospice Care ◽  
Financial Burden ◽  
Critical Role ◽  
Terminal Condition ◽  
Home Setting ◽  
Physical Burden ◽  
Hospice Patients ◽  
Medical Directors ◽  
Home Hospice Care ◽  
Eol Care

Background: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives: To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects: Participants included certified HMDs obtained from a public website. Results: Participants’ responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient’s terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient’s needs. Conclusions: HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs’ expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.

Sign in / Sign up

Export Citation Format

Share Document