Abstract
Background and Objectives
We aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to ...encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers’ understanding of, and attitudes to dementia, we explored how carers’ cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services.
Research Design and Methods
We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed.
Results
We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks.
Discussion and Implications
Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support.
Youth with intellectual and developmental disabilities (I/DD) are more likely to be placed in foster care than other youth. Examining the clinical and sociodemographic characteristics of youth with ...I/DD in the foster care system is critical for identifying disparities and understanding service needs.
To produce a population-level analysis of youth with I/DD in foster care that examines differences in rates of foster care involvement based on race, ethnicity, age, and sex.
This cross-sectional study involved all individuals with I/DD 21 years and younger enrolled in Medicaid through foster care in 2016 via data from Transformed Medicaid Statistical Information System (T-MSIS) Analytic Files (TAF) for all 50 US states and Washington, DC. As a key insurer of I/DD services and foster care, Medicaid claims offer a timely population-level analysis. Youth with I/DD were grouped into diagnostic subgroups: autism spectrum disorder (ASD) only, intellectual disability only, or ASD and ID. The data analysis took place from July 2022 to September 2023.
TAF data contain Medicaid enrollment information by month with a binary indicator of foster care involvement, and eligibility files identify race, ethnicity, age, and sex.
The period prevalence of foster care involvement was determined among I/DD youth by diagnostic subgroups using an intersectional approach across race, ethnicity, age, and sex. Logistic regression examined associations between risk for foster care involvement and race, ethnicity, age, and sex.
A total of 39 143 youth with I/DD had foster care involvement in 2016. Black youth (adjusted odds ratio aOR, 1.37; 95% CI, 1.28-1.47) and females (aOR, 1.18; 95% CI, 1.1-1.27) had increased likelihood for foster care involvement. The likelihood for foster care involvement increased with age in all groups relative to the age group 0 to 5 years old.
This study found that among youth with I/DD, Black youth and females faced higher risk for foster care involvement, and the likelihood of foster care involvement increased with age. There is an urgent need for research that focuses on addressing system-level factors that drive increased risk. Understanding the specific health needs of Black and female youth with I/DD is critical to ensure the formation, implementation, and monitoring of equitable delivery of health services.
Children who are adopted from care are more likely to experience enduring emotional and behavioral problems across development; however, adoptees’ trajectories of mental health problems and factors ...that impact their trajectories are poorly understood. Therefore, we used multilevel growth analyses to chart adoptees’ internalizing and externalizing problems across childhood, and examined the associations between preadoptive risk and postadoptive protective factors on their trajectories. This was investigated in a prospective longitudinal study of case file records (N = 374) and questionnaire-based follow-ups (N = 96) at approximately 5, 21, and 36 months postadoptive placement. Preadoptive adversity (indexed by age at placement, days in care, and number of adverse childhood experiences) was associated with higher internalizing and externalizing scores; the decrease in internalizing scores over childhood was accelerated for those exposed to lower levels of preadoptive risk. Warm adoptive parenting was associated with a marked reduction in children's internalizing and externalizing problems over time. Although potentially limited by shared methods variance and lack of variability in parental warmth scores, these findings demonstrate the deleterious impact of preadoptive risk and the positive role of exceptionally warm adoptive parenting on children's trajectories of mental health problems and have relevance for prevention and intervention strategies.
The disparity of problems, impairments, and disorders among children in foster care is well-documented and spans virtually every domain of functioning. Sleep, however, has received minimal attention ...among this vulnerable group, which is concerning given the multitude of ways sleep affects children's development, health, and behavior.
A total of 485 foster caregivers from across the United States completed a survey including quantitative items and qualitative, open-ended questions about sleep and related health and behavior for one child (M = 6.4 years, SD = 2.2; range 4-11 years) currently in their care.
Overall, caregivers reported developmentally appropriate child sleep and wake times; however, difficulty falling asleep (avg. 46 min per night) and staying asleep (avg. 34 min awake overnight) were common. Additionally, a high prevalence of sleep-related problems was reported including moving to someone else's bed during the night (85.8%), nightmares (51.2%), sleep terrors (26.4%), snoring (32.8%), bedwetting (31.6%), and teeth grinding (21.8%). Qualitative responses indicated emotional and behavioral challenges at bedtime, particularly elevated fear, and anxiety.
Findings are consistent with previous work finding significant health disparities among children placed in foster care. Results highlight a need for trauma-informed, behavioral sleep interventions for this pediatric population which might serve to reduce other health disparities.
Children and adolescents in foster care experience challenging and complex health, behavioral, and developmental needs in highly mobile and complicated social environments. Frequent placement changes ...limit provider-patient relationships, disrupt continuity of care, and contribute to inaccurate health histories. These unmet needs of youth in foster care reduce their well-being, safety, and permanency. Limited integration of health care and social services results in difficulty coordinating, planning, and tracking the care of these youth, putting them at increased risk. Advanced practice nurses must consider this a population with special health care needs, utilizing a trauma-informed, integrated care approach.
Matching children with foster carers is an important step in every nonkinship family foster care placement. Although guidelines for matching are provided in several studies, the case‐specific context ...of the decision can influence the practitioners' ability to adhere to these guidelines. Therefore, this study answers the following question: “How does the case‐specific context influence the practitioners' decision‐making process regarding matching in family foster care?” Using a qualitative design, 20 semistructured interviews were conducted with practitioners matching children with foster families. Three themes emerged representing different layers of practitioners' everyday decision‐making: matching as planned, matching being tailored, and matching being compromised. The results show that exceptions are part of practitioners' daily work, either due to the belief that it might benefit those involved or because of obstacles presented during the decision‐making process. When the decision is compromised, matching practitioners lower their standards, while at the same time safeguarding the quality of the match. This proves that matching in practice is more than choosing a family, and guidelines are needed to determine what “good‐enough” matching should entail.
This study shows that state efforts at child protection are structured by the policy regimes in which they are enmeshed. Using administrative data on child protection, criminal justice, and social ...welfare interventions, I show that children are separated from their families and placed into foster care far more frequently in states with extensive and punitive criminal justice systems than in states with broad and generous welfare programs. However, large welfare bureaucracies interact with welfare program enrollment to create opportunities for the surveillance of families, suggesting that extensive and administratively complex welfare states engage in "soft" social control through the surveillance and regulation of family behavior. The article further shows that institutionalization, a particularly restrictive form of foster care placement, is least common in states with broad and generous welfare regimes and generally more common under punitive regimes. Taken together, these findings show that policy regimes influence the interaction between families and the state through their proximate effects on family structure and well-being and through institutional effects that delimit the routines and scripts through which policymakers and street-level bureaucrats intervene to protect children.
•Trauma-focused cognitive behavioral therapy benefits foster care youth.•Day-to-day functioning and post-traumatic stress symptoms improve with treatment.•Older child age and home-based care may ...indicate a higher risk for termination.
Children in foster care experience trauma at a high rate, resulting in their need for effective and accessible mental health treatments. Trauma-Focused Cognitive Behavioral Therapy (TF-CBT) has the potential to significantly improve the functional impairment and post-traumatic stress symptoms (PTSS) of children in foster care who fully complete treatment without terminating early. The purpose of this study was to explore child- and setting-level predictors (age, sex assigned at birth, race and ethnicity, treatment setting, and pre-treatment level of post-traumatic stress symptoms) of early termination and multifaceted TF-CBT effectiveness outcomes within a statewide practice initiative (N = 399). Accessibility and completion of TF-CBT within this sample of children in foster care were measured by early termination rates. Older children (7.8% more likely) and those receiving home-based TF-CBT (57.1% more likely) terminated TF-CBT early at significantly higher rates. No differences in treatment completion were found for race and ethnicity, sex assigned at birth, or pre-treatment PTSS. Results support that TF-CBT can improve PTSS and associated functional impairment at a degree that is statistically and clinically significant for children in foster care. Implications of study findings for TF-CBT treatment of foster care youth who are older and receiving home-based care are provided.
Sibling co-placement and kinship care have each been shown to protect against the occurrence of placement change for youth in substitute care. However, little is known about the effects of different ...combinations of sibling placement and relative caregiver status on placement change. Nor does the field fully understand how family dynamics may differ in these households. Utilizing data from the Supporting Siblings in Foster Care study, this paper examines family dynamics across four typologies of living composition, and tests the effects of living composition membership on the odds of experiencing a placement change over an 18-month period of time. Findings suggest that across living composition typologies, children who were placed separately from their siblings in non-relative care were more likely to be older, have more extensive placement histories, and experience more placement changes both prior to and during the study than were children in other living composition groups. Family living composition was found to influence the occurrence of placement change. Specifically, children co-placed in kinship care were least likely to experience movement; however, sibling co-placement in non-relative care was also protective. Results reveal the need to conduct additional research into the experiences of children in different family living arrangements, and tailor case management services and supports to children in substitute care accordingly. Implications and future directions are discussed.
•The effects of family dynamics and household living composition on placement change were investigated.•Sibling co-placement in kinship care was most protective against placement change.•Sibling co-placement in non-relative care was also protective.•Higher levels of problem behaviors were reported for older youth who were residing apart from their sibling.
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