Caregivers Of Youth Research Articles

Shared decision making between community therapists and Latinx caregivers during evidence-based practice delivery in publicly-funded children’s mental health services

ObjectivesThis observational study examined shared decision-making (SDM) with caregivers of Latinx youth within the delivery of multiple evidence-based practices (EBPs) in community mental health services. Study aims were to (1) Characterize therapist use of SDM strategies and (2) Describe the types of treatment decisions that were the focus of therapist use of SDM. MethodsThe OPTION instrument was used to measure SDM in 210 audio-recorded therapy sessions with 62 community therapists and 109 Latinx caregivers; frequency and mean ratings of OPTION items were examined. Qualitative analysis on the descriptions of treatment decisions being deliberated was also conducted. ResultsResults revealed that therapists used at least one SDM step in most sessions (N = 192; 91.43%) with a mean composite score of 32.78 (SD=17.79; range: 6.25–81.25). Four superordinate categories of decisions were: (1) Treatment planning, (2) Evidence-based Parenting Strategies, (3) Addressing Youth Functioning, and (4) Addressing Family Psychosocial Needs. ConclusionsFindings suggest that community therapists serving Latinx families are naturalistically engaging in SDM steps about a variety of decisions during most EBP sessions, but only at modest levels.

Juvenile probation officer perception of contingency management to target caregiver engagement and training outcomes

Few community-based substance use treatment programs are available or skilled in treating justice-involved youth, highlighting the need to equip juvenile probation officers with the skills to deliver evidence-based substance use treatment. Contingency management (CM) is evidence-based for treating substance use and shows promise for juvenile probation officers’ successful uptake (positive opinions and trainability). However, research has not examined whether probation officers’ positive beliefs and trainability generalize to target behaviors beyond those displayed by youth, but that nevertheless affect youth outcomes. This study examined probation officers’ perceptions of using CM to engage caregivers and assessed probation officers’ CM knowledge and CM delivery after training in a protocol-specific CM program for caregivers of substance-using youth on probation. Results showed probation officers were ambivalent about CM for caregivers. Results also showed that age, training format and how competency is assessed may be essential to consider. Implications for the dissemination of CM and future research are discussed.

How best to support parents of children with an eating disorder: A commentary on Wilksch (2023).

Wilksch (2023) uses survey data to characterize the perspective of caregivers of children who have undergone treatment for an eating disorder. With this framework, the author presents an evocative view of both the challenges these parents experience in acquiring needed specialty treatment, as well as the negative impact that the caregiving role may have on their own well-being. Altogether, this Forum underscores the unquestionable importance of not overlooking the practical and emotional needs of caregivers of youth with eating disorders, and presents a compelling call to action for our field to better support parents who navigate treatment for these challenging illnesses.

Exploring diffusion and spillover effects of an evidence-based mental health intervention among peers and caregivers of youth in rural regions of Sierra Leone

Exploring diffusion and spillover effects of an evidence-based mental health intervention among peers and caregivers of youth in rural regions of Sierra Leone

Disparities in Youth and Family Experiences of System-of-Care Principles by Level of Youth Need.

The extent to which mental health services for youths embody system-of-care (SOC) principles is an important quality indicator. This study tested whether youth and family experiences of SOC principles varied depending on youths' level of need after adjusting for sociodemographic and treatment factors. The relationship to caregiver-reported clinical outcomes was also examined. Using administrative data and cross-sectional surveys from a stratified random sample of 1124 caregivers of youths ages 5-20 within a statewide system, adjusted analyses indicated caregivers of youths with the most intensive needs were significantly less likely to report receiving care that embodied SOC principles, with deficits on six of nine items. Youths whose services embodied SOC principles experienced significantly greater improvement in caregiver-reported functioning even after adjusting for level of need. Results highlight disparities in SOC principles for youths with intensive needs and the need for policy and intervention development to improve care for this population.

Adapting Community Health Worker Care Models to Advance Mental Health Services Among LGBTQ Youth

Lesbian, gay, bisexual, transgender, and queer (LGBTQ) youth of color experience high rates of mental health disorders, yet they experience challenges to accessing mental health services. Community health worker (CHW) models of care have potential to promote equitable mental health services among LGBTQ youth. Our aim was to understand how CHW models could be adapted to better support LGBTQ youth of color in accessing mental health services. Semi-structured qualitative interviews were conducted with LGBTQ youth of color (n = 16), caregivers of LGBTQ youth (n = 11), and CHWs (n = 15) in Massachusetts and California. Interviews were coded by 8 members of the research team. A Rapid Qualitative Analysis was conducted to identify themes. Caregivers, youth, and CHWs all endorsed the value of CHW models for this population. They also almost universally suggested multiple adaptations are needed for the model to be effective. Four main categories of themes emerged related to intervention adaptations: (1) Why adaptations are needed for LGBTQ youth, (2) Who should serve as CHWs providing care, (3) How CHWs should be trained, and (4) What content needs to be included in the intervention. Broadly, findings suggest the relevance of having CHW models for LGBTQ youth of color to address stigma and discrimination experienced, access to culturally and linguistically relevant services, and the need for caregiver support of LGBTQ youth. CHWs need increased training in these areas.

Development and Preliminary Validation of the Accommodations & Impact Scale for Developmental Disabilities.

The lives of caregivers can be deeply impacted by having a child with a developmental disability (DD). To offset those impacts, caregivers may engage in accommodations, or strategies to bolster everyday functioning. The nature and extent of these accommodations can provide insight into how the family is doing and what supports are needed from a family-centered perspective. This paper presents the development and preliminary validation of the Accommodations & Impact Scale for Developmental Disabilities (AISDD). The AISDD is a rating scale that measures day-to-day accommodations and impacts of raising a child with a DD. A sample of 407 caregivers of youth with DDs (Mage = 11.7years; 63% males) completed the AISDD, along with measures of caregiver strain, daily challenges, child adaptive behavior, and behavior and emotional regulation. The AISDD is a unidimensional, 19-item scale with excellent internal consistency (ordinal alpha = .93) and test-retest (ICC = .95) reliability. Scores were normally distributed and sensitive to age (r = -.19), diagnosis (ASD + ID > ASD > ID), adaptive functioning (r = -.35), and challenging behaviors (r = .57). Finally, the AISDD showed excellent convergent validity with similar measures of accommodations and impacts. These findings support the use of the AISDD as a valid and reliable tool for measuring accommodations among caregivers of individuals with DDs. This measure shows promise in its ability to identify which families may need additional support for their children.

Variable patterns of daily activity participation across settings in autistic youth: A latent profile transition analysis.

What people do or engage in in their daily lives, or daily life participation, is often linked to their state of being happy and healthy, as well as potential for living independently. To date, little research has been conducted on daily activity participation by autistic youth at home, at school or in the community. Learning more about individual differences in participation levels and what might influence them can help to create custom supports for autistic youth and their families. In this study, 158 caregivers of autistic youth were asked how often their children took part in 25 common activities at two assessments, about one year apart. The analysis showed three profiles for each of the home and school settings and two profiles for the community setting. These profiles reflected distinct patterns in how often autistic youth took part in various daily activities, particularly in doing homework, school club activities and community gatherings. Most autistic youth were in profiles marked by often taking part at home but less often at school and in the community, and about three-fourths of them tended to stay in the same profile over time. Autistic youth with limited participation profiles were more likely to have lower scores on measures of cognitive ability and daily life skills and more challenging behaviour, and faced more barriers in their environment. These findings show how important it is to think about each autistic person's strengths and weaknesses, and changing needs, to better support their daily life participation.

Caregivers of youth in foster care in Texas and their role in contraception decision-making for adolescents in care

ObjectivesThis study describes the perspectives of caregivers of youth in foster care in Texas about the caregiver’s role in adolescent contraception decision-making for adolescents in their care, particularly for long-acting reversible contraception. The study also explores how providers and foster care agencies can better support pregnancy prevention for youth in care. Study designResearchers recruited 18 caregivers of youth in care from an academic center in Texas to complete in-person, one-on-one, semistructured interviews from August to December 2019. Two independent coders identified the main concepts with thematic analysis; discrepancies were resolved by consensus. ResultsMost caregivers identified as female (88%), Black (59%), and ranged in age from 30 to 69 years old. Half (47%) reported previously caring for an adolescent who was pregnant or parenting. Themes from the interviews included the importance of building relationships before contraception conversations, the balance between adolescent autonomy and strict caregiver oversight in contraceptive decision-making, variation in beliefs about contraception for youth in care, and extreme reactions to long-acting reversible contraception in both directions. Providers and foster care agencies played an important role managing confidential expectations and providing resources or trainings about contraception. ConclusionsIn a region of the country with high rates of adolescent pregnancy, strategies that empower adolescent autonomy allow delicate caregiver oversight, provide comprehensive information about all contraceptive options, and respond to extreme long-acting reversible contraception reactions and trainings that focus on the context of contraception that should inform communication-based interventions to address teen pregnancy prevention among youth in care. ImplicationsFew studies address the experiences of caregivers of adolescents in foster care. This study highlights a range of caregiver attitudes about contraception for adolescents in care. Provider training regarding contraception should include strategies to manage caregiver beliefs and extreme reactions to contraception use among youth in care.

The Association Between Caregiver Coping and Youth Clinic Attendance and Health-related Quality of Life in Pediatric Sickle Cell Disease.

Caregivers of youth with sickle cell disease (SCD) influence the youth disease management and psychosocial outcomes. Effective caregiver coping is important for improving disease management and outcomes since caregivers often report high disease-related parenting stress. This study characterizes caregiver coping and examines its relation to youth clinic nonattendance and health-related quality of life (HRQOL). Participants were 63 youth with SCD and their caregivers. Caregivers completed the Responses to Stress Questionnaire-SCD module to assess primary control engagement (PCE; attempts to change stressors or reactions to stress), secondary control engagement (SCE; strategies to adapt to stress), and disengagement (avoidance) coping. Youth with SCD completed the Pediatric Quality of Life Inventory-SCD module. Medical records were reviewed for the hematology appointment nonattendance rates. Coping factors were significantly different ( F [1.837, 113.924]=86.071, P <0.001); caregivers reported more PCE ( M =2.75, SD =0.66) and SCE ( M =2.78, SD =0.66) than disengagement ( M =1.75, SD =0.54) coping. Responses to short-answer questions corroborated this pattern. Greater caregiver PCE coping was associated with lower youth nonattendance (β=-0.28, P =0.050), and greater caregiver SCE coping was related to higher youth HRQOL (β=0.28, P =0.045). Caregiver coping is related to improved clinic attendance and HRQOL in pediatric SCD. Providers should assess caregiver coping styles and consider encouraging engagement coping.

Barriers to service and unmet need among autistic adolescents and young adults.

Prior studies have described the roadblocks, or barriers, to needed services experienced by families with young autistic children, but less research has focused on those faced by autistic adolescents and young adults. In this study, we wished to understand the barriers to service experienced by autistic adolescents and young adults and their families. We surveyed 174 caregivers of autistic youth between 16 to 30 years old. We found that caregivers who felt more caregiving burden had more difficulty accessing services for their youth. Specifically, caregivers who felt more strongly that their daily lives had been disrupted, felt more financial strain, and worried more about their youth well-being experienced more roadblocks to getting services for the youth. Male caregivers also reported fewer difficulties related to service access. Importantly, the older the youth was when they had been diagnosed with autism, the more service barriers their caregivers reported. We did not see any differences in the level of barriers experienced by youth who lived in urban versus suburban settings, or between white and non-white families. However, when youth lived with their caregivers (rather than, for example, in a group home), fewer quality-related barriers to services were reported. Finally, greater access (but not quality) barriers were linked to youth having more unmet service needs. These findings can help to reduce the barriers to service experienced by autistic adolescents and young adults and their families.

The genogram as a recruitment tool for identifying primary caregivers of youth living with sickle cell disease preparing for transition.

The purpose of this secondary analysis was to describe the impact of using genograms to identify family caregivers from an original research study which used family caregiver-adolescents/young adults (AYA) dyads. Research to improve transition preparation for AYA with chronic disease is essential as 90% will survive into adulthood. Family-based transition research is specifically needed as a majority of transition preparation will occur in the home setting. Dyadic research on transition has not previously described strategies for recruiting appropriate family caregivers. A descriptive, secondary analysis was conducted using genograms developed during the original study conducted between October 2019 and February 2020. For this secondary analysis conducted between July 2020 and August 2021, 50 genograms were analysed using descriptive statistics to describe family structures, relationships and responsibilities in families of AYAs living with sickle cell disease. In 43 genograms, there was only one primary caregiver in the family. In seven genograms, there were multiple primary caregivers who met the inclusion criteria for primary caregiver in a single family. In five genograms, there were two appropriate primary caregivers in a single family, and in two genograms, there were three appropriate individuals in a single family who met study criteria as a primary caregiver. Findings from the analysis of the genograms used in the original study demonstrated potential ability to improve on dyad recruitment by more specifically identifying the family member most involved in supporting the AYA's disease management. Genograms are an established tool for gathering information on families and application with recruitment could improve research in the realm of transition and other family-based research. This was a secondary analysis that assessed already existing data.

Needs of caregivers of youth enrolled in a statewide system of care: A latent class analysis

ObjectiveSystems of care (SOC) provide a coordinated array of services to youth with serious emotional and behavioral problems and their families. Little is known about what caregiver-specific needs at presentation to care may contribute to use of and engagement with care coordination and subsequent youth and family outcomes. This study aimed to determine latent classes of youth enrolled in wraparound care coordination within a statewide SOC based on caregiver needs impacting youth functioning and identify the relationship between class membership and characteristics of participation in Child and Family Team meetings (CFTs) and mental health outcomes at six-month follow-up. MethodParticipants were 703 youth (Mage = 11.21, SD = 3.67) and their caregivers that had information about caregiver needs and received a six-month follow-up assessment. Latent class analysis determined latent classes of families based on caregiver service needs at presentation to care, and differences in participation in care coordination and youth outcomes at 6-month follow up based on class membership was examined. ResultsResults indicated four classes of caregiversPhysical Health Needs, No Needs, Basic Needs, and Mental Health/Trauma Needs. Class membership was associated with size of the CFT, number of CFTs attended by the youth, percentage of CFTs with a natural support present, and percentage of CFTs that occurred in the family’s home. Class membership was associated with caregiver ratings of objective strain at 6-month follow-up. ConclusionAssessing caregiver needs at presentation to care can provide direction for care coordinators to more directly target areas of family need through wraparound and individualize services.

Brief emotion-focused family therapy: A 12-month follow-up study.

This study provides a 12-month follow-up evaluation of caregivers after participating in a 2-day Emotion-focused family therapy (EFFT) intensive, a brief intervention for caregivers of youth struggling with mental health difficulties. Caregivers (N = 498) of children (N = 337) completed measures of caregiver self-efficacy and child mental health difficulties 1 week before the intervention, immediately after the intervention, and at 4, 8, and 12-month follow-ups. Piecewise latent trajectory models revealed that parental self-efficacy showed a large immediate increase following the intervention, β = 1.61 (1.32, 2.14), and although this effect was attenuated by 4months, β = -0.77 (-1.31, -0.52), it did not change further by 12 months. Reductions in child mental health difficultieswere observed by 4 months, β = -0.54 (-0.77, -0.37), and remained stable through the 12-month follow-up. Caregivers reporting more increases in self-efficacy also reported greater reductions in their children's symptoms at 4 and 12 months.

Recognize and Support Caregiving Youth in Your Care.

Recognize and Support Caregiving Youth in Your Care.

Impacts of the COVID-19 Pandemic: Pan-Canadian Perspectives From Parents and Caregivers of Youth With Neurodevelopmental Disabilities

The COVID-19 pandemic brought unprecedented challenges for youth with neurodevelopmental disabilities (NDD) and their families. Although health measures were implemented to contain the COVID-19 virus, they disrupted public service, profoundly impacting youth and their families' access to services. This study sought to better understand the perspectives and experiences of parents and caregivers of youth with NDD across Canada in accessing services and their mental health needs during the pandemic. The study used a qualitative research design in which we interviewed 40 parents and caregivers across Canada. The results enabled us to understand the impact of service disruptions in significant areas of life, including health, education, employment, and risk mitigation. Policymakers must consider a disability-inclusive lens during public health emergency planning and response to reduce the disproportionate impacts faced by youth with NDD and their families.

Middle and High School Students Who Take Care of Siblings, Parents, and Grandparents: Associations With School Engagement, Belonging, and Well-Being

This partnership-based study identified how many middle and high school students take care of parents, siblings, and grandparents at home, via student surveys across Rhode Island public schools (N = 48,508; 46% White non-Latinx; 21% Latinx; 47% girls). Further, we investigated how students’ caregiving for family related to their school engagement, belonging, and emotional well-being. A sizable proportion of students reported caring for family for part (29%) or most of the day (7%). Girls and Black, Asian, Latinx, Native, and multiracial youth were more likely to care for family, compared to boys and White non-Latinx youth. Caregiving students from all demographics were more likely to experience intense sadness compared to noncaregivers, revealing a need to support caregiving youth in schools. In addition, caregiving girls reported lower levels of school engagement and school belonging. However, caregiving for part of the day was related to greater belonging among Black and Native youth.

The network structure of the Special Interests Survey.

Despite the prevalence of special interests (SIs) in autistic youth, research on SIs and how they are characterized is limited. Indeed, a significant challenge in identifying and classifying SIs lies in capturing the vast and diverse scope of potential interests in this population. The recently developed Special Interest Survey (SIS) is a caregiver-report measure to improve SI characterization by capturing a broad range of past and current SIs. In the present study, we performed a network analysis of the SIS to examine relations between SIs and identify distinct interest clusters. We analyzed data from 1992 caregivers of autistic youths who completed the SIS. The network of SIs was densely interconnected, characterized by six communities of interests: Fact-seeking, Engineering, Order-seeking, Object Attachment, Entertainment, and Scholarly Pursuits. Findings suggest that the structure of the observed network is likely to generalize to similar samples. Of all the SIs and their respective communities, behaviors related to Fact-seeking were identified as the most central, meaning that endorsement of these interests was most strongly related to co-endorsement of other SIs. These findings lay the groundwork for future work on SIs, such as improved assessment techniques and linkage of SIs to a broad range of demographic variables, youth characteristics, and autism symptoms.

Communication Preferences of Parents and Caregivers of Children and Youth With Special Healthcare Needs During a Hypothetical Infectious Disease Emergency.

Children and youth with special healthcare needs are at risk for severe consequences during infectious disease emergencies. Messages for parents and caregivers from trusted sources, via preferred channels, that contain the information they need, may improve health outcomes for this population. In this mixed methods study, we conducted a survey (N = 297) and 80 semistructured interviews, with 70 caregivers of children and youth and 10 young adults with special healthcare needs, between April 2018 and June 2019 in Pennsylvania. The survey presented 3 scenarios (ie, storm, disease outbreak, radiation event); the interviews included questions about storms and an outbreak. This article addresses only the disease outbreak data from each set. Participants were recruited through convenience samples from an urban tertiary care children's hospital and practices in a statewide medical home network. In this article, we summarize the preferred information sources, channels, and content needs of caregivers of children and youth with special healthcare needs during an infectious disease emergency. Nearly 84% of caregivers reported that they believe their child's doctor is the best source of information. Other preferred sources include medical experts (31%); the US Centers for Disease Control and Prevention (30%); friends, family, and neighbors (21%); and local or state health and emergency management (17%). Pediatric healthcare providers play an important role in providing information to parents and caregivers of children and youth with special healthcare needs during an infectious disease emergency. Public health agencies can establish health communication plans that integrate medical practices and other reliable sources to promote the dissemination of accurate information from trusted messengers.

Child and adolescent caregiving for family: Emotional, social, physical, and academic risk and individual differences.

In the United States, it is estimated that more than 5.4 million children and adolescents under age 18 provide care for adult family members who are aging or have a chronic illness, disability, or other health conditions that require assistance. However, little is known about how providing care to the family during childhood and adolescence impacts youth development. We examined whether caregiving as a youth is associated with emotional challenges, peer difficulties, course grades, and physical health risk behaviors. A large, diverse sample of middle and high school students in Florida completed the first systematic school-based survey in the U.S. to date to count caregiving youth (N = 10,880; 52% female; Mage = 14.40, 40% Latinx). Youth reported the amount of caregiving they provided to the family each week, in addition to items reflecting their emotional challenges (e.g., suicidality), peer difficulties (e.g., experiences of conflict or victimization), academic course grades, and health risk behaviors (e.g., diet, physical activity, sleep). We found that Latinx and Black youth provided higher levels of caregiving to the family compared to youth from White non-Latinx, Asian, or Other ethnicities. Caregiving was associated with more emotional challenges, more peer difficulties, and lower course grades for all groups. In addition, providing caregiving was associated with a less healthy diet among older youth and sleeping less than 8 hr per night among White non-Latinx youth. These findings highlight a need to support caregiving youth and their families via policies and institutional supports. (PsycInfo Database Record (c) 2022 APA, all rights reserved).