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. The cross-sectional survey, which included both closed-ended and open-ended items, was distributed to a convenience sample of parents of children with SBS. Quantitative and qualitative data were integrated for a mixed-methods analysis of how individual items impacted parent well-being. RESULTS: Twenty parents completed the survey. Sleep interruptions, lack of support and resources, and psychological stressors and their mental health implications were more frequently reported as stressors than logistics related to caregiving (e.g., managing therapies and preparing specialized meals). CONCLUSION: The impact of a child's SBS on parent well-being may stem mainly from three interconnected domains: poor sleep and its consequences, lack of access to support and resources, and a range of psychological stressors that affect parent mental health. Understanding the mechanisms through which SBS shapes parent well-being is a necessary first step for developing targeted interventions to support parents and provide family-centered care.

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. The cross-sectional surveys were distributed to a convenience sample of parents of children with SBS. Child and family wellbeing were described and compared across child age group and involvement of an intestinal rehabilitation program (IRP). Multivariate regression analyses investigated associations between outcomes and IRP management. Open-ended responses were analyzed to investigate perceived impact of the child's SBS on the parent. RESULTS: Seventeen parents completed both surveys; 71% perceived child QoL as higher today than what they had originally been told to expect. Child daily life and family difficulty scores suggest parents perceived both to be fairly "normal". While acknowledging effort invested in condition management, parents perceived high competence in managing their child's condition; 56% perceived personal growth resulting from their child's SBS journey. IRP management was associated with better child daily life (4.11, p = 0.015), family difficulty (-4.85, p = 0.048), and family management ability (4.28, p = 0.014) scores. CONCLUSIONS: Many parents perceive child and family life with SBS to be fairly "normal", manage their child's care with great competence, and report personal growth because of their child's SBS journey. Additional research inclusive of diverse patient and parent backgrounds is warranted. LEVEL OF EVIDENCE: prognosis study; Level IV.

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. Rumination by caregivers about end-of-life suffering was an important predictor of depression and complicated grief. Most caregivers viewed the death as at least in part a relief. One important focus of grief support may be to help caregivers find productive ways to avoid rumination and use other forms of coping and to acknowledge feelings of relief.

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. METHOD: Demographic characteristics, patient impairment, caregiver baseline symptoms of depression, and caregiver resources were assessed among 188 cancer patient-caregiver dyads. Regression analyses identified predictors of symptoms of depression, grief, and complicated grief one year following loss. RESULTS: Over 50% of bereaved caregivers had clinically significant depressive symptoms one year after death of their relative. Caregivers with fewer years of education and more baseline symptoms of depression had significantly worse grief, complicated grief, and depression. Younger patient age was a significant predictor of poorer outcomes for grief and complicated grief; and less patient impairment was a significant predictor of more post-loss symptoms of depression. Lower social support satisfaction was correlated with worse grief and complicated grief but was not a significant multivariate predictor of poorer outcomes. CONCLUSION: Despite having access to hospice bereavement services, many former caregivers had high psychological distress one year following loss. Bereavement departments could consider utilizing readily available risk factors to target services to former caregivers who may benefit from bereavement services. Bereavement departments might also consider including brief, standardized screenings of caregiver depression in initial risk assessments. Future studies should investigate evidence-based approaches for assessment and interventions among highly distressed former hospice caregivers.

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 = 74.5 ± 7.18 years) indicating preferences for cardiopulmonary resuscitation, mechanical ventilation, and artificial feeding and fluids in hypothetical illness scenarios. RESULTS: Participants with a more expansive perspective of future time, less perceived change in memory, greater perceived memory capacity, and greater depressive symptomatology and Blacks/African Americans had greater overall desire for treatment. CONCLUSION: Differences in perceived time left to live and memory beliefs affect treatment desires in ways that may not be recognized by families and/or physicians. Identifying perceptions associated with end-of-life treatment preferences may improve interventions that facilitate quality care through patient autonomy.

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. If you needed hospice services, would you use them?" A greater willingness was observed in younger persons (odds ratio (OR)=0.96, 95% confidence interval (CI)=0.93-0.98) and those with higher levels of education (OR=1.67, 95% CI=1.12-2.48), more chronic conditions (OR=1.23, 95% CI=1.05-1.44), health insurance (OR=0.59, 95% CI=0.37-0.94), higher levels of acculturation (OR=1.07, 95% CI=1.03-1.10), and prior awareness of hospice (OR=4.43, 95% CI=2.85-6.90). The present study highlights the role of prior awareness in shaping individuals' attitudes toward services, calling attention to a need for community education and outreach programs for racial and ethnic minorities, with specific emphasis on dissemination of information and greater awareness of hospice services.

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. METHODS: Stroke survivors (N=75) from a prospective epidemiological study of stroke, the REasons for Geographic and Racial Differences in Stroke (REGARDS) study, and their family caregivers were followed. Caregivers were given a comprehensive telephone interview 8 to 12 months after the stroke, using measures of stroke patient problems, caregiver appraisals of the stressfulness of these problems, and perceived benefits of caregiving. RESULTS: Caregivers rated patient problems with mood (depression, loneliness and anxiety), memory, and physical care (bowel control), as the most stressful, but reported prevalence of these problems was lower than those reported previously in studies using clinical samples. Caregivers also reported many benefits from caregiving, with over 90% reporting that caregiving enabled them to appreciate life more. CONCLUSIONS: Epidemiologically based studies of stroke caregiving provide a unique picture of caregiver strains and benefits compared with clinical studies, which tend to over-represent more impaired patients. Support for caregivers should include interventions to aid their coping with highly stressful mood, physical care, and cognitive problems of stroke patients, but should also attend to perceived benefits of caregiving.

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. PARTICIPANTS: Seventy-eight adults (aged 74.5+/-7.18) with a mean Telephone Interview for Cognitive Status--Modified (TICS-m) score of 31.5+/-4.7 were recruited through personal contacts and informational talks held at the recruitment sites. MEASUREMENTS: Measures included the Life Support Preferences/Predictions Questionnaire--modified (LSPQ-m); the Decisional Conflict Scale; and enhanced information, including detailed descriptions of life-sustaining treatment options for each LSPQ-m illness scenario, risks of the treatment, benefits of the treatment, and alternatives for each treatment (called medical information stimuli). RESULTS: Enhanced information (e.g., medical information stimuli) reduced decisional conflict (P=.049, d=0.47) for hypothetical life-sustaining treatment decisions. A mixed analysis of variance with group and race as between-subjects variables and illness and treatment as within-subjects variables revealed significant main effects of race, illness, and treatment, as well as a significant race-by-illness-by-group interaction (Wilk's lambda=0.923, F(2, 73)=3.05, P=.05, partial eta(2)=0.08). Enhanced information produced different patterns of desire for life-sustaining treatments in African Americans and Caucasians. CONCLUSION: Physicians and other healthcare professionals can reduce decisional conflict in patients by providing enhanced information regarding treatment risks, benefits, and alternatives. Such decision aids may provide new information or knowledge and thus reduce desire for treatment in African Americans.