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Mary Ann Liebert

Correlates of Subjective Caregiver Strain in Caregivers of Youth Evaluated in a Pediatric Psychiatric Emergency Room

Background: Although caregiver burden is relevant to the outcome for psychiatrically ill youth, most studies have focused on caregiver burden in the community or research settings. Therefore, we aimed at evaluating the subjective caregiver strain (SCS) at the time of presentation of youth to a pediatric psychiatric emergency room (PPER), assessing potential correlates to provide leads for improvements in formal support systems.

Tue, 01/17/2023 - 09:25

The Impact of Caregiver Health Literacy on Pediatric Asthma: An Integrative Review

Importance: There is increasing literature on the role of health literacy in asthma outcomes. Despite less than half of Americans having proficient health literacy, health literacy is an essential component in providing quality medical care. Observations: Most of the literature on the impact of health literacy on asthma outcomes is from the adult asthmatic population, where lower health literacy is associated with poorer asthma outcomes, including decreased quality of life, worse asthma control, and more Emergency Department visits for asthma.

Wed, 12/28/2022 - 16:51

"it can be hard but it's not bad": Three questions to solicit caregiver perceptions of benefits and burdens to participating in pediatric palliative care research

Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential. Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3.

Fri, 07/29/2022 - 17:43

Family Caregivers' Emotional Preparedness for Death is Distinct from Their Cognitive Prognostic Awareness for Cancer Patients

Background: Cognitive prognostic awareness (PA) and emotional preparedness for a loved one's death are distinct but related phenomena. However, the distinction between these two concepts has not been studied in family caregivers. Objective: To examine whether these two concepts are distinct by comparing their evolution and predictors over cancer patients' last year. Methods: Agreement between emotional preparedness for death and cognitive PA was longitudinally evaluated for 309 family caregivers by percentages and kappa coefficients.

Wed, 05/25/2022 - 14:12

Family Caregiver Problems in Outpatient Palliative Oncology

Background: Understanding challenges of family caregivers within specific palliative care contexts is needed. Objective: To describe the challenges of family caregivers of patients with cancer who receive outpatient palliative care. Methods: We summarized the most common and most challenging problems for 80 family caregivers of cancer patients receiving outpatient palliative care in the midwestern United States.

Wed, 05/25/2022 - 11:04

Experience of Caregivers Supporting a Patient through Voluntarily Stopping Eating and Drinking

Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED. Objective: To explore the experiences of caregivers who supported a patient through VSED. Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U.S.

Sun, 02/27/2022 - 16:20

Development of a Decision Aid for Patients and Families Considering Hospice

Background: Hospice is underutilized. Miscommunication, decisional complexity, and misunderstanding around engaging hospice may contribute. Shared decision making (SDM), aided by patient decision aids (PtDAs), can improve knowledge and decision quality. Currently, there are no freely available hospice-specific PtDA to facilitate conversions between patients and providers about hospice care. Objective: To develop a theory-based and unbiased hospice specific PtDA.

Tue, 02/08/2022 - 16:33

Caregiver Burden among Informal Caregivers in the Kerala Palliative Care Program: Development and Validation of the Achutha Menon Centre-Caregiver Burden Inventory

Background: Family caregivers of bedridden or homebound patients are at risk of adverse physical and psychological outcomes. There is a need for a culturally adapted and valid instrument for measuring caregiver burden in palliative care programs. Objective: To develop a reliable and valid instrument to measure the self-perceived burden of informal caregivers of patients with serious health-related suffering. Design/Setting: "Caregiver burden" was conceptualized based on literature review and in-depth interviews.

Wed, 01/19/2022 - 15:21

Creating a Seat at the Table: How Family Meetings Elucidate the Palliative Care Social Work Role

Background: Palliative care social workers (PCSWs) play a crucial role in optimizing communication and family-centered care for seriously ill patients. However, PCSWs often struggle to demonstrate and receive open acknowledgment of their essential skill set within medical teams.

Fri, 03/19/2021 - 10:45

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