Patient–family EoL communication and its predictors: Reports from caregivers of Latino patients in the rural U.S.–Mexico border region

AbstractObjective:Family caregivers play an important role in end-of-life (EoL) decision making when the patient is unable to make his/her own decisions. While communication about EoL care between patients and family is perhaps a first step toward advance care planning (ACP)/EoL decisions, not every culture puts great value on open communication about this topic. The aims of the present study were to explore EoL communication and the aspects of communication among caregivers of Latino patients in the rural United States (U.S.)–Mexico border region.Method:This study analyzed data from a hospice needs assessment collected from 189 family caregivers of Latino patients at a home health agency in a rural U.S.–Mexico border region. Bivariate tests and logistic regression were used to address our aims.Results:About half of the family caregivers (n = 96, 50.8%) reported to have ever engaged in EoL discussion with patients. Significant predictors of EoL discussion included life-sustaining treatment preference (odds ratio [OR] = 0.44, p < 0.05); knowledge of an advance directive (AD) (OR = 5.50, p < 0.01); and distrust of physicians (OR = 0.29, p < 0.01). Caregivers who preferred extending the life of their loved one even if he/she had to rely on life supports were less likely to engage in EoL communication. Also, caregivers who worried that physicians might want to stop treatments (i.e., “pull the plug”) too soon were less likely to do so. Conversely, caregivers who had knowledge about ADs were more likely to engage in EoL communication.Significance of Results:EoL communication is a complex process influenced by individual, social, and cultural values and the beliefs of both the patient and his/her family. Inclusion of family caregivers in the ACP process and facilitating culturally tailored EoL communication between patients and family caregivers is important.

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Challenges and facilitators of hospice decision-making: a retrospective review of family caregivers of home hospice patients in a rural US–Mexico border region—a qualitative study

BMJ Open ◽

10.1136/bmjopen-2019-035634 ◽

2020 ◽

Vol 10 (7) ◽

pp. e035634

Author(s):

Eunjeong Ko ◽

Dahlia Fuentes ◽

Savitri Singh-Carlson ◽

Frances Nedjat-Haiem

Keyword(s):

Decision Making ◽

Qualitative Study ◽

Family Caregivers ◽

Home Healthcare ◽

Border Region ◽

Clear Understanding ◽

Mexico Border ◽

Eol Care ◽

Us Mexico Border ◽

Lack Of Knowledge

ObjectivesHospice care (HC) is seen as a comprehensive approach, that enhances quality of end-of-life (EOL) care, for terminally ill patients. Despite its positive aspects, HC enrolment is disproportionate for rural patients, who are less likely to use HC in comparison to their urban counterparts. The purpose of this study was to explore decision-making experiences, related to utilisation of HC programmes from a retrospective perspective, with family caregivers (FCGs) in a rural US–Mexico border region.DesignThis qualitative study was conducted from May 2017 to January 2018 using semistructured face to face interviews with FCGs. Data were analysed using thematic analysis.SettingThe HC programme was situated at a local home health agency, located in rural Southern California, USA.ParticipantsTwenty-eight informal FCGs of patients who were actively enrolled in the HC programme agreed to participate in the study.ResultsConversation about HC as an option was initiated by home healthcare staff (39.3%), followed by physicians (32.1%). Emerging themes related to challenges in utilisation of HC and decision-making included: (1) communication barriers; (2) lack of knowledge/misperception about HC; (3) emotional difficulties, including fear of losing their patient, doubt and uncertainty about the decision, denial and (4) patients are not ready for HC. Facilitators included: (1) patient’s known EOL wishes; (2) FCG-physician EOL communication; (3) the patient’s deteriorating health and (4) home as the place for death.ConclusionsHC patients’ FCGs in this rural region reported a lack of knowledge or misunderstanding of HC. It is recommended that healthcare providers need to actively engage family members in patient’s EOL care planning. Optimal transition to an HC programme can be facilitated when FCGs are informed and have a clear understanding about patients’ medical status along with information about HC.

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Willingness to use hospice care among caregivers of Latino patients in the United States–Mexico border region

Palliative & Supportive Care ◽

10.1017/s1478951516000687 ◽

2016 ◽

Vol 15 (3) ◽

pp. 279-287 ◽

Cited By ~ 3

Author(s):

Eunjeong Ko ◽

Jaehoon Lee ◽

Carlos Ramirez ◽

Stephanie Martinez ◽

Denicka Lopez

Keyword(s):

United States ◽

Family Caregivers ◽

Hospice Care ◽

Underserved Populations ◽

The United States ◽

Border Region ◽

Care Services ◽

Mexico Border ◽

Willingness To Use ◽

Eol Care

ABSTRACTObjective:Hospice is an important method of promoting quality end-of-life (EoL) care, yet its utilization is relatively low in underserved populations. The unique characteristics of a border community—such as a lack of healthcare resources and cultural integration—impact EoL decision making. The aim of our study was to assess the willingness to use hospice care services and its predictors among family caregivers of Latino patients in the United States (U.S.)–Mexico border region of Southern California.Method:This study analyzes secondary data from a home health agency in the U.S.–Mexico border region. Quantitative data were collected via a face-to-face interview with 189 caregivers of patients enrolled in the agency. Bivariate tests and logistic regression were employed to address our study objectives.Results:The majority (83%) of family caregivers were willing to use hospice services for their loved ones. The factors impacting willingness to use hospice services included the primary language of the caregiver (OR = 6.30, CI95% = 1.68, 23.58); trust in doctors to make the right decisions (OR = 3.77, CI95% = 1.05, 13.57); and the belief that using hospice care means giving up on life (OR = 0.52, CI95% = 0.30; 0.88). Caregivers who trusted doctors to make the best decisions for their loved ones and English-speaking caregivers were more willing to utilize hospice services, while caregivers who held a strong belief that hospice care means giving up on life were less likely to consider using hospice care for their loved ones.Significance of results:The willingness of family caregivers to use hospice services for their loved ones is influenced by cultural perspectives about hospice care. As the importance of family involvement in EoL care planning has been highlighted, family caregivers' beliefs about hospice care services need to be addressed within their particular cultural context.

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End-of-Life Communication Between Providers and Family Caregivers of Home Hospice Patients in a Rural US-Mexico Border Community: Caregivers’ Retrospective Perspectives

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909119885099 ◽

2019 ◽

Vol 37 (5) ◽

pp. 329-335

Author(s):

Eunjeong Ko ◽

Dahlia Fuentes

Keyword(s):

End Of Life ◽

Family Caregivers ◽

Hospice Care ◽

Border Region ◽

Care Transition ◽

Informational Needs ◽

The Family ◽

Mexico Border ◽

The Impact ◽

Us Mexico Border

Introduction: Family caregiver–provider communication is essential to making an effective hospice care transition for patients. Despite the importance of this topic, there is little information about how caregivers in rural US-Mexico border regions navigate hospice care transition and their needs. This study explores the family caregivers’ experience relating to their end-of-life (EOL) communication and needs for hospice care transition. Methods: In-depth interviews using qualitative methods were conducted with 28 informal caregivers of patients who are enrolled in home hospice care in a rural US-Mexico border region. Thematic analysis was applied to analyze the data. Results: Qualitative themes that emerged include (1) lack of/insufficient EOL communication and (2) informational needs, including (a) signs of symptom changes, (b) EOL treatment options and goals of care, and (c) hospice care and its benefits. Limited caregiver–provider EOL communication was observed, in which the majority of the caregivers (n = 22, 78.6%) were informed of the patient’s terminal condition, but only half (n = 15, 53.6%) had a discussion with the providers about hospice care. Conclusion: Timely EOL communication between caregivers and the providers is key to the patient’s optimal transition to hospice care. Providers need to be aware of the caregivers’ informational needs relating to patient symptoms and health condition as well as hospice care. It is important to be aware of the impact of cultural values on hospice care placement. A clear explanation about the purpose and functions of hospice care and its benefit can better guide the family caregivers in making hospice care decisions.

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Mentalizing Imagery Therapy mobile application for family dementia caregivers: feasibility and effects on mood and caregiving

10.31231/osf.io/cgpfs ◽

2018 ◽

Author(s):

Abu Sikder ◽

Francis Yang ◽

Rhiana Schafer ◽

Glenna A. Dowling ◽

Lara Traeger ◽

...

Keyword(s):

Family Caregivers ◽

Mobile Application ◽

Self Regulation ◽

Pilot Trial ◽

Depression Symptom ◽

Structured Interviews ◽

Physical Strain ◽

Dementia Caregivers ◽

Loved One ◽

People With Dementia

Objectives: Due to psychological and physical strain, family caregivers of patients with Alzheimer’s disease and related dementias are at high risk for depression and stress related disorders. We investigated the feasibility of a mobile application (App) intervention delivering Mentalizing Imagery Therapy (MIT), which incorporates guided imagery and mindfulness, to facilitate self-regulation and increase perspective on the mental life of self and others. Method: A 4-week pilot trial of an MIT App for family caregivers of people with dementia was conducted to assess feasibility of use, mood and depression symptom benefit, and relationship changes. Semi-structured interviews were conducted at the study’s conclusion to characterize participants’ perceived benefits. Results: 80% of 21 consented participants downloaded the App, utilized it at least once, and were further analyzed. Of these participants, average usage of audio recordings was 14 ± 10 (SD) days out of 28 possible, and 29 ± 28 individual sessions. Acute improvement in mood from before to after completion of exercises was uniformly observed (p < .001), and after four weeks there was a significant increase in positive affect and a reduction in negative affect. Participants with severe levels of depression (n=3) at baseline exhibited an improvement in symptoms at 4 weeks averaging 30% (p < .05). Semi-structured interviews revealed an increase in the ability to remain “centered" despite caregiving challenges, take the perspective of the loved one, and positively reframe the caregiver experience.Conclusion: App delivery of MIT is feasible for family dementia caregivers. Results showed moderate to high usage of the app for a majority of the users, and promising improvements in mood and depression. These data provide justification for larger, controlled trials.

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Tuberculosis Control Laws in the U.S.-Mexico Border Region: Legal Framework in the United States

SSRN Electronic Journal ◽

10.2139/ssrn.2709829 ◽

2015 ◽

Author(s):

Polly J. Price

Keyword(s):

United States ◽

The United States ◽

Legal Framework ◽

Border Region ◽

Tuberculosis Control ◽

Control Laws ◽

Mexico Border ◽

The U.S

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Healing experience for family caregivers after an intensive care unit death

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2018-001561 ◽

2019 ◽

pp. bmjspcare-2018-001561 ◽

Cited By ~ 2

Author(s):

Susan DeSanto-Madeya ◽

Dan Willis ◽

Julie McLaughlin ◽

Aristotle Boslet

Keyword(s):

Intensive Care Unit ◽

Intensive Care ◽

Family Caregivers ◽

Phenomenological Study ◽

Healthcare Providers ◽

Loved One ◽

Hermeneutic Phenomenological ◽

Telephone Interviews ◽

Hermeneutic Phenomenological Study ◽

Purposive Sample

ObjectivesFamily caregivers suffer a high burden of emotional and psychological distress following the death of a loved one in the intensive care unit and often struggle to heal in the weeks following their loss. The purpose of this hermeneutic phenomenological study was to describe and interpret the experience of healing for family caregivers six weeks following the death of a loved one in the ICU.MethodsSemi-structured telephone interviews were conducted with a purposive sample of twenty-four family caregivers six weeks following the death of their loved ones in the ICU. Qualitative analysis techniques were used to identify common themes central to the experience of healing across all interviews.ResultsSeven themes were interpreted from the data: searching for clarity from a time of uncertainty; riding an emotional rollercoaster; seeking peace in one’s decisions; moving forward with each new day; taking comfort in the memories; valuing layers of support; and discovering life on one’s own.ConclusionBy identifying and gaining an understanding of healing following the death of a loved one in the ICU, nursing and other healthcare providers have an opportunity to promote healing and positively impact family caregiver’s bereavement.

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The Role of Advance Care Planning in Cancer Patient and Caregiver Grief Resolution: Helpful or Harmful?

Cancers ◽

10.3390/cancers13081977 ◽

2021 ◽

Vol 13 (8) ◽

pp. 1977

Author(s):

Francesca Falzarano ◽

Holly G. Prigerson ◽

Paul K. Maciejewski

Keyword(s):

Cancer Patients ◽

Family Caregivers ◽

Advance Care Planning ◽

Care Planning ◽

Do Not Resuscitate ◽

Prospective Longitudinal Study ◽

Advance Care ◽

Grief Resolution ◽

Caregiver Grief ◽

Prospective Longitudinal

Cancer patients and their family caregivers experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers. To fill this knowledge gap, the current study examined changes in grief over time in patients and their family caregivers and whether changes in patient grief are associated with changes in caregiver grief. We also sought to determine how grief changed following the completion of advance directives. The sample included advanced cancer patients and caregivers (n = 98 dyads) from Coping with Cancer III, a federally funded, multi-site prospective longitudinal study of end-stage cancer care. Participants were interviewed at baseline and at follow-up roughly 2 months later. Results suggest synchrony, whereby changes in patient grief were associated with changes in caregiver grief. We also found that patients who completed a living will (LW) experienced increases in grief, while caregivers of patients who completed a do-not-resuscitate (DNR) order experienced reductions in grief, suggesting that ACP may prompt “grief work” in patients while promoting grief resolution in caregivers.

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Cultural and Institutional Issues in ACP for Care Home Residents: Perspectives of Loved Ones

Innovation in Aging ◽

10.1093/geroni/igaa057.2717 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 754-754

Author(s):

Brian de Vries ◽

Gloria Gutman ◽

Helen Kwan ◽

Katrina Jang ◽

Shimae Soheilipour ◽

...

Keyword(s):

South Asian ◽

Care Home ◽

Decision Makers ◽

Loved One ◽

Targeted Interventions ◽

Traditional Family ◽

Institutional Issues ◽

Bisexual And Transgender ◽

Advance Care

Abstract Focus groups were held with family/decision makers of residents in an exclusively Chinese (EC; N=7) and a multi-ethnic (ME; N=8) care home, as well as South Asian (SA; n = 5) and lesbian, gay, bisexual and transgender caregivers (LGBT; n = 5) who had/have a loved one in a care home. Shared themes across groups included the role of the care home in Advance Care Planning (ACP) discussions, the timing of such discussions (i.e., at admission), and the extent to which another person was available and appropriate for such discussions. Issues unique to groups included superstition and the equation of ACP with funeral planning (EC), family history and regrets about not having planned (ME), gender differences and the need for education about ACP (SA) and the absence of traditional family among LGBT older adults. These themes highlight the challenges in ACP among diverse populations and the need for targeted interventions.

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