Designing and Testing an End-of-Life Discussion Intervention for African American Patients With Heart Failure and Their Families

Piamjariyakul, Ubolrat; Smith, Carol E.; Werkowitch, Marilyn; Thompson, Noreen; Fox, Maria; Williamson, Karin Porter; Olson, Lori

doi:10.1097/njh.0000000000000290

Cited by 12 publications

(11 citation statements)

References 27 publications

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“…FamPALcare intervention involves coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions. FamPALcare intervention will begin by using recent American Heart Association (AHA) study recommendations and the “Conversation Ready” for wording when approaching the topic of EOL care [32] as a guide along with an illustrated advanced HF trajectory graph [20]. The nurse will coach the patient and family in making decisions about EOLPC options based on their preferences.…”

Section: Methodsmentioning

confidence: 99%

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Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial

et al. 2019

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BackgroundHeart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home.MethodsThis study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state.DiscussionThe outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process.Trial registrationClinicalTrials.gov NCT04153890, Registered on 4 November 2019

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Section: Methodsmentioning

confidence: 99%

“…Coaching Model for End-of-Life and Palliative Care Research was used to guide selection of coaching components, procedures, and measures targeted to accomplish the study aims [20, 21]. This model depicts relationships among clinical, psychological, and economic factors affecting home EOLPC care.…”

Section: Introductionmentioning

confidence: 99%

Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial

et al. 2019

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“…The EOLPC coaching conceptual framework was used to guide the pilot study (Piamjariyakul et al, 2016, 2018). This coaching framework has overall EOL content topics as well as details on pre‐test study design components and methods such as recommended data collection endpoints.…”

Section: Methodsmentioning

confidence: 99%

“…Specifically, this conceptual framework, which has been verified empirically, included home EOLPC intervention strategies such as monitoring EOL symptoms and caregiver fatigue (Piamjariyakul et al, 2013, 2015). Coaching was defined in the model as an interactive information‐sharing process for guiding families in home EOLPC strategies (Bennett et al, 2010; Piamjariyakul et al, 2016, 2018). The coaching approaches used consistently were key to maintaining fidelity in the implementation of home FamPALcare and Advance Directives discussions.…”

Section: Methodsmentioning

confidence: 99%

Verifying intervention fidelity procedures for a palliative home care intervention with pilot study results

Piamjariyakul

Smothers

Young

et al. 2021

Research in Nursing & Health

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Fidelity (consistency of intervention implementation) is essential to rigorous research. Intervention fidelity maintains study internal validity, intervention reproducibility, and transparency in the research conduct. The purpose of this manuscript is to describe intervention fidelity strategies/procedures developed for a pilot study testing a new palliative care nursing intervention (FamPALcare) for families managing advanced lung disease. The procedures described herein are based on the fidelity best practices recommendations from the NIH Consortium. An evidence‐based checklist guided observational ratings of the fidelity procedures used and the intervention content implemented in each intervention session. Descriptive data on how participants understood (received), enacted, or used the intervention information were summarized. The fidelity checklist observational scores found ≥93% of the planned intervention content was implemented, and the fidelity strategies were adhered to consistently during each intervention session. The small variation (7%) in implementation was expected and related to participants' varying experiences, input, and/or questions. The helpfulness scale items include participants' ability to use home care resources, to anticipate and manage end‐of‐life symptoms, and to use Advance Directive forms. The high ratings (M = 4.4) on the 1–5 (very helpful) Likert Helpfulness Scale verified participants utilized the information from the intervention. Furthermore, there was an improvement in patients' breathlessness scores and completion of Advance Directive forms at 3 months after baseline. It is essential to plan intervention fidelity strategies to use throughout a study and to report fidelity results.

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“…These developments have increased not only the care-related costs for families, as indicated by the research finding that nurses provide validation of the concerns of patients and their families as well as education, 2 but also the demand for end-of-life care and the timely provision of palliative care. 3 The primary family caregiver plays a key role in providing care to a terminally ill patient. 4 Usually, home-based palliative care (HBPC) programs provide unpaid care and assistance with daily activities to terminally ill patients' family members, 5,6 which is the most favored choice among patients and family members who have a preferred place of care.…”

Section: Introductionmentioning

confidence: 99%

The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care

Huang

Tsao

2020

Am J Hosp Palliat Care

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Background: An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to receive care from family members. However, few studies have been conducted on the subjective perception and value of caregivers for home-based palliative care (HBPC). Objective: To identify common themes and topics of primary family caregivers’ lived experiences with HBPC when taking care of terminally ill family members. Methods: We conducted audio-recorded transcripts of one-on-one in-depth interviews of primary family caregivers of HBPC. Through a purposive sampling method, the participants were all interviewed; these interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: A total of 22 primary family caregivers participated in the study. “Wholeheartedly accompanying one’s family to the end of life at home” was the core category. Six main themes describing caregivers’ experiences emerged from the interviews: (1) learning the basic skills of end-of-life home care, (2) arranging the sharing and rotation of care, (3) preparing for upcoming deaths and funerals, (4) negotiating the cultural and ethical issues of end-of-life home care, (5) ensuring a comfortable life with basic life support, and (6) maintaining care characterized by concern, perseverance, and patience. Conclusions: Primary family caregivers of HBPC need support and must learn home care skills by means of the holistic approach. It is crucial to establish assessment tools for caregivers’ preparedness for HBPC, including biopsychosocial and cultural considerations.

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Designing and Testing an End-of-Life Discussion Intervention for African American Patients With Heart Failure and Their Families

Cited by 12 publications

References 27 publications

Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial

Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial

Verifying intervention fidelity procedures for a palliative home care intervention with pilot study results

The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care

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