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Mary Ann Liebert Inc

CHAMP+ Thailand: Pilot Randomized Control Trial of a Family-Based Psychosocial Intervention for Perinatally HIV-Infected Early Adolescents

Within Asia, HIV prevalence is highest in Thailand, including thousands of children and adolescents. Care for children born with HIV [perinatal transmission of HIV (PHIV)] will need to focus on adolescents for the foreseeable future. Thai PHIV adolescents experience significant mental health and psychosocial challenges, including treatment adherence. Yet, few, if any, comprehensive interventions for them exist. CHAMP+, an evidence-based intervention adapted for Thailand, was evaluated with a pilot randomized control trial at four HIV clinics.

Mon, 01/16/2023 - 13:13

Family Perspectives on Telemedicine for Pediatric Subspecialty Care

Background: Children often have difficulty accessing subspecialty care, and telemedicine may improve access to subspecialty care, but information is lacking on how best to implement telemedicine programs to maximize acceptance and, ultimately, maximize impact for patients and their families.

Tue, 01/10/2023 - 17:11

"There's Just No Way to Help, and They Did." Parents Name Compassionate Care as a New Domain of Quality in Pediatric Home-Based Hospice and Palliative Care

Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs.

Tue, 12/20/2022 - 16:48

Telehealth Acceptability for Children, Family, and Adult Hospice Nurses When Integrating the Pediatric Palliative Inpatient Provider during Sequential Rural Home Hospice Visits

Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers.

Objective: Determine whether telehealth inclusion of a familiar pediatric palliative care provider during the first two home-based hospice visits was acceptable to children, families, and adult-trained home hospice nurses in rural settings. Design: Case series. Setting: Home hospice in rural Midwest. Participants: Patients <18 years of age enrolling in home hospice for end-of-life care.

Tue, 12/20/2022 - 08:35

A Comparison of Caregiver Burden of Patients with Advanced Cancer in Different Palliative Cancer Care Settings

Background: Informal caregivers may experience a significant burden while caring for cancer patients. Little is known about how caregiver burden varies across different palliative cancer care settings and the factors influencing it. Objectives: We compared the severity of caregiver subjective stress burden (emotional impact) among caregivers of patients seen in the outpatient supportive care center (SCC) with those being cared for in the acute palliative care unit (PCU).

Tue, 08/16/2022 - 18:12

Bereaved Family More Likely to Report "Too Little" Care than "Too Much" Care at the End of Life

Background: An often-stated concern is that dying persons receive too much aggressive medical care. Objective: Examine next-of-kin perceptions of the amount of medical care received in the last month of life. Design: Mixed-methods study with 623 survey responses and in-depth interviews with a subsample of 17 respondents. Subjects: Nontraumatic deaths 18 years and older in San Francisco Bay area.

Fri, 01/14/2022 - 16:13

Investigation on the Status and Determinants of Caregiver Burden on Caring for Patients with Chronic Wound

Objective: To investigate the caring burden and its determinants of primary informal caregiver of patients with chronic wound. Approach: A prospective cross-sectional study of 132 pairs of chronic wound care recipients and their informal caregivers was included. The characteristics of patients and their informal caregivers as well as caregiver burden assessment by the caregiver burden inventory (CBI) were measured.

Wed, 10/09/2019 - 13:55

Family Caregiver Perspectives on End-of-Life Dreams and Visions during Bereavement: A Mixed Methods Approach

Background: End-of-life dreams and visions (ELDVs) are prevalent experiences that provide comfort and meaning to dying individuals. Limited research has examined the impact of ELDVs on the bereaved. Objective: This study aimed to explore differences in self-reported grief for people whose loved ones shared ELDVs and those who did not, and to describe the role of ELDVs in the grieving process. Design: Mixed-methods cross-sectional survey.

Tue, 09/10/2019 - 11:25

Self-Care System for Family Caregivers of Cancer Patients Using Resonant Breathing with a Portable Home Device: A Randomized Open-Label Study

Background: Self-care systems for early-stage specialist palliative care for cancer patients and their family caregivers have received much attention recently. Resonant breathing is an established method for maximizing heart rate variability (HRV), but it has not been implemented for home self-care. Objective: We aimed to examine the usefulness and ease of implementation for family caregivers to administer resonant breathing using a portable device at home.

Tue, 06/18/2019 - 15:28

Needs Assessment for Turkish Family Caregivers of Older Persons with Cancer: First-Phase Results of Adapting an Early Palliative Care Model

Background: Although palliative care is expanding globally for patients with serious illness, Turkey has not had widespread integration of early concurrent oncology palliative care. Hence, adapting and testing models of concurrent oncology palliative care for Turkish patients is imperative.

Sun, 06/09/2019 - 21:09

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