Exploring the impact of pediatric short bowel syndrome on parent well-being using a disease-specific pilot survey.

Background: Children with short bowel syndrome (SBS) have complex care needs, most of which are met in the home by family caregivers who may experience a range of stressors unique to this experience. Prior research suggests that parents of children with SBS have poorer health-related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied.

Methods: A pilot survey was developed using a community-driven research design to measure the impact of disease-specific items on parent-perceived well-being.

A beautiful struggle: Parent-perceived impact of short bowel syndrome on child and family wellbeing.

Background: Despite considerable improvements in outcomes for children with short bowel syndrome (SBS), many clinicians remain pessimistic about long-term quality of life (QoL) for this population.

Methods: The validated FaMM tool was used to measure parent-perceived impact of the child's condition on child and family life. Partnered disease-specific survey questions relevant to child's overall wellbeing and family function were additionally completed and reported.

Bereavement outcomes among spousal hospice caregivers: Relief, rumination, and perceived patient suffering.

Witnessing end-of-life suffering of loved ones is an underappreciated stressor that may affect caregiver bereavement. We interviewed 61 spousal caregivers of hospice patients who died within the past 6-18 months. Higher rumination about suffering and lower feelings of relief was related to poorer well-being.

Bereavement among hospice caregivers of cancer patients one year following loss: predictors of grief, complicated grief, and symptoms of depression.

Background: Informal caregivers are an integral part of end-of-life care for hospice patients with cancer. Although adjustment following loss is highly individual, many caregivers have significant psychological distress after the death of a loved one. This study investigated risk factors that may predict psychological distress, which could aid hospice bereavement departments in targeting bereavement services.

Prospective end-of-life treatment decisions and perceived vulnerability: Future time left to live and memory self-efficacy.

Objective: Public policy and opinion support autonomous medical decision-making; however, research on perceptions related to future functioning that may influence health-related decisions is limited. Additional research is needed to understand individual perceptions for engaging in future life-sustaining treatment decisions.

Methods: Perceived time left to live and memory self-efficacy were assessed among 77 adults (M = 74.

Willingness of older Korean-American adults to use hospice.

Responding to an urgent need for more research on end-of-life concerns of racial and ethnic minorities, the present study explored predictors of willingness of older Korean-American adults (N=675) to use hospice. Guided by Andersen's behavioral health model, the study considered predisposing factors (age, sex, marital status, education), potential health needs (chronic conditions, functional disability), and enabling factors (health insurance, acculturation, prior awareness of hospice). Nearly three-quarters of the sample answered yes to the following statement and question, "Hospice is a program that helps people who are dying by making them feel comfortable and free of pain when they can no longer be cured of their disease.

Problems and benefits reported by stroke family caregivers: results from a prospective epidemiological study.

Background And Purpose: Stroke symptoms can be very stressful for family caregivers, but most knowledge about the prevalence and stressfulness of stroke-related patient problems is derived from convenience samples. In addition, little is known about perceived benefits of the stroke caregiving experience. The purpose of this study was to determine the prevalence and stressfulness of stroke-related problems, and perceived benefits of caregiving, as reported by an epidemiologically derived sample of caregivers of stroke survivors.

End-of-life decision-making, decisional conflict, and enhanced information: race effects.

Objectives: To examine the effect of enhanced information regarding the risks, benefits, and life-sustaining treatment alternatives on hypothetical medical decisions and decisional conflict in older, community-dwelling Caucasian and African-American adults.

Design: Two-group (enhanced information; no information) between-subjects design.

Setting: Community-based dwellings, two assisted living facilities, and one senior citizen center.