Spiritual Well-Being in Appalachian Family Caregivers

Piamjariyakul, Ubolrat; Young, Stephanie; Shafique, Saima; Palmer, Nathaniel; Wang, Kesheng

doi:10.14574/ojrnhc.v24i1.757

OJRNHC

2024

DOI: 10.14574/ojrnhc.v24i1.757

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Spiritual Well-Being in Appalachian Family Caregivers

Ubolrat Piamjariyakul,

Stephanie Young,

Saima Shafique

et al.

Abstract: Introduction: Dementia and heart failure (HF) are the most common co-existing end-of-life conditions among rural older adults requiring extensive caregiving. Studies conducted in Appalachia have found that caregivers report a lack of information about palliative care and managing complex care at home. They also indicate the need for spiritual support.

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Cited by 2 publications

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Palliative Home Care Based on Clinically Relevant Scientific Measures: A Cross-Sectional Study

Piamjariyakul,

Young,

Hendrickson

et al. 2024

Am J Hosp Palliat Care

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Introduction: Measuring palliative care needs of patients with multiple complex illnesses and their family, is essential for providing quality clinical care. The integrated palliative care outcome scale (IPOS) is a scientifically verified measure of patients’ physical, emotional symptoms, and their palliative care communication and practical needs. The patients in this study require palliative care due to both their end-of-life heart failure (HF) and vascular dementia. Purpose: The purposes are to describe and compare home palliative care needs measured by the family caregivers (N = 20) and patients (N = 20) IPOS scores and to examine whether the patient IPOS total score can predict patient HF health status and caregiving burden scores. Methods: This study uses explanatory research design with rigorous methods for obtaining information from multiple sources. Descriptive, Cohen’s Kappa (k) statistics comparing patient and caregiver IPOS scores and regression analyses to examine the patient IPOS scores impact on patient HF health status and caregiving burden scores were used. Results: There was significant agreement between patient and caregiver ratings on 16 out of 17 IPOS items (k = .34 to .80). Regression analyses found that the patient IPOS total score significantly predicted patients’ HF health status ( β = −.50, P < .05), and caregiving burden scores ( β = .57, P < .01). Conclusion: Patients’ and their caregivers’ IPOS scores agreement indicates palliative care needs can be consistently identified. The patient IPOS total scores can predict patients’ HF health status and caregiving burden. These measures provide information directly applicable for health professionals guiding palliative home care.

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Palliative Home Care Based on Clinically Relevant Scientific Measures: A Cross-Sectional Study

Piamjariyakul,

Young,

Hendrickson

et al. 2024

Am J Hosp Palliat Care

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Palliative care for patients with heart failure and family caregivers in rural Appalachia: a randomized controlled trial

Piamjariyakul,

Smothers,

Wang

et al. 2024

BMC Palliat Care

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Background Heart failure (HF) is a debilitating disease with worsening symptoms and family caregiving burden. HF affects more than 8 million Americans. West Virginia has the highest HF death rate in the U.S. and limited healthcare services. This study tested whether the family HF palliative and end-of-life care intervention (FamPALcare) improved patient and caregiver outcomes at 3- and 6-month study endpoints. Methods This study used a randomized controlled trial design. Patients with HF and their caregivers were randomly assigned together to the intervention (n = 21) or control (n = 18) group. The intervention included five telephone coaching sessions on the HF home, palliative, and end-of-life care. The outcome data collected at baseline and at 3 and 6 months were from the patients’ (a) HF-related health status and depression/anxiety scale scores; and from caregivers’ (b) caregiving burden and depression/anxiety scale scores; and (c) anonymous ratings on the 11-item FamPALcare helpfulness scale, completed by the intervention participants. Results The mean age of the patients was 65.66 (SD = 13.72) years, and 67% were White males. The mean age of the caregivers was 62.05 (SD = 13.14) years, and 77% were White females. Compared to the controls, patients in the intervention group had significantly greater scores for HF-related health status (p < .05) and lower depression/anxiety scores at 6 months, the study endpoint. The family caregivers in the intervention group had significantly lower scores on caregiving burden (p < .05) and depression/anxiety (p < .01) at 3 months. The mean helpfulness rating was M = 4.46 out of 5 (SD = 0.49). Conclusions The FamPALcare intervention was found to be effective at improving patient HF-related health status and reducing caregiver burden and improving both patient and caregiver depression and anxiety scores. The FamPALcare HF intervention was found feasible and consistently delivered (fidelity). The FamPALcare intervention’s cost-effectiveness and helpfulness ratings information will be used to plan for subsequent clinical trials. Trial registration ClinicalTrials.gov NCT04153890, Registered on 4 November 2019, https://clinicaltrials.gov/ct2/show/NCT04153890.

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Spiritual Well-Being in Appalachian Family Caregivers

Cited by 2 publications

References 51 publications

Palliative Home Care Based on Clinically Relevant Scientific Measures: A Cross-Sectional Study

Palliative Home Care Based on Clinically Relevant Scientific Measures: A Cross-Sectional Study

Palliative care for patients with heart failure and family caregivers in rural Appalachia: a randomized controlled trial

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