Health Care innovation and children in poverty: lived experiences of caregivers of children with disabilities in a medicaid-serving ACO

This paper reports the results of a qualitative study of caregivers of children with disabilities enrolled in a Medicaid-serving accountable care organization (ACO). The state of Ohio mandated ACO enrollment for Medicaid-eligible children with disabilities in 34 of 88 counties effective July 2013. Research participants were queried in focus groups and individual interviews about their children’s care experiences and care coordination after enrollment. Most told researchers that they themselves are their children’s care coordinators, and many indicated that resource scarcity is a more pressing problem than fragmented care. Data analysis identified a theme of scarcity and four categories of insufficiency that made caregiver efforts on behalf of their children more difficult: a lack of health services under managed care, resource constraints on other agencies and programs for which families were eligible, a lack of financial support, and a lack of family support. A conceptual framework places ACO care coordination among more upstream factors and identifies ways in which ACOs serving Medicaid populations may wish to address the social determinants of the well-being of children with disabilities. Implications for future research are discussed.     

Caregiver Needs Following Disclosure of Child Sexual Abuse

Caregiver support is vital in improving outcomes for child sexual abuse victims; however, the disclosure can significantly affect caregivers, thus impacting their ability to meet their children’s needs. To maximize the support from caregivers, their own needs following disclosure need to be met. This study investigated the impact of child sexual abuse disclosure and associated needs as identified by caregivers. Sixty needs assessment forms were collected from families who accessed a parenting support pilot program run in New Zealand. These forms were completed by nonoffending caregivers during an assessment session with their counselor and consisted of both open-ended and Likert scale questions focusing on both the needs of the child and the family. Caregivers identified a range of impacts of the disclosure on their children, themselves, and other families members and the related support that may be needed. In particular, caregivers identified that they needed support with child behavior management and with their own coping. The findings suggest that interventions with caregivers following disclosure of child sexual abuse may be a valuable adjunct to therapy provided directly to the child.     

Resource use of rural low-income families caring for children with disabilities

The Personal Responsibility Work Opportunity Reconciliation Act, Pub.L. 104-193 (PRWORA) was passed creating the Temporary Assistance to Needy Families (TANF) program. Since the passage of PRWORA, many families were able to leave the welfare rolls while those remaining on welfare were likely composed of families facing barriers to leaving, such as caring for children with disabilities. This project addresses the gaps in knowledge regarding low-income families caring for children with disabilities by conducting qualitative research investigating the resources used by these families to find and keep employment and child care. The study used a sample from a research project entitled ‘Rural Families Speak’ and examined the data of 26 families caring for children with disabilities. Analysis resulted in policy recommendations for increasing the efficacy of the programs designed to help these families.     

Post-adoption needs of families adopting children with developmental disabilities

The post-adoption service use and needs of 125 families who had adopted children with developmental disabilities were examined using a structured mail questionnaire. Although satisfaction with services used was generally high, many families did not have access to basic family support services such as respite care, life planning and support groups. Income was the only demographic variable which correlated with service need. Middle income families (mean = $30,000 to $34,999) were more likely to need support groups and babysitting for other children than either lower or higher income groups. Of particular note in this study is the relatively high incidence of transracial adoptions. Thirty-one percent of the sample had adopted children of a different race than the family. The implications of the findings and service recommendations are discussed.     

Family carers' views of services for people with learning disabilities from Black and minority ethnic groups: a qualitative study of 30 families in a south London borough

In 2001, the UK Government identified the widespread neglect of the needs of people with learning disabilities from Black and minority ethnic communities. In this qualitative study informal interviews were held with 30 family carers of adults with learning disabilities from Black and minority ethnic communities. Their views were sought regarding services received and services needed, and cultural or communication barriers faced in accessing appropriate services. The study showed that although carers were largely satisfied with services actually received, service provision was highly inadequate and ineffective. Even very elderly and ill carers and those caring for people with severe disabilities received little support. Social worker support was negligible, and future planning rare. It is clear that the needs of carers from Black and minority ethnic communities are not being met. The situation would be considerably eased by adequate social worker support. Stereotypes of supportive family networks, (especially regarding south Asian families) proved to be unfounded.     

Service Provision for Preschool Children Who Are Deaf

ABSTRACT

The data reported have been derived from the first national review of preschool service provision for deaf children and their families. This paper examines the kinds of service provision seen as desirable by families with deaf children between 0 and 5 years of age in relation to current UK Government interest in: Universal Neonatal Hearing Screening, family support initiatives including a focus on parent-professional partnerships, and Inclusive Education. Data presented includes families& responses to early identification; the information available following identification; perceptions of their own partnerships with professionals; and the value of family centred services for themselves, their children and for family life. From these data, aspects of good practice are identified and illustrated for consideration in future service development.     

The essence of being connected: the lived experience of mothers with young children in newer residential areas

Parenthood is a significant life transition and a time of increased social support need. In newer residential areas, a lag in social infrastructure and family relocation can influence potential isolation of families with young children. This qualitative study explored the lived experiences of being connected to local communities for mothers with children aged 0–5 years. Family insights were obtained through in-depth interviews with 12 mothers who were primary caregivers, homeowners and living in newer residential areas in outer suburban Perth, Western Australia. For mothers with young children, being connected to the local community appears to be shaped from their past and present lived experience as well as future aspirations. Connectedness evolves and may develop more slowly in newer communities where social relationships and networks are often recently formed. ‘Interaction’, ‘knowing what's going on’ and ‘help is nearby if you need it’ were identified as the essential themes of connectedness for mothers and families in this study. Belonging was identified as an incidental theme as not all mothers who felt connected felt like they belonged. The findings provide insight for professionals and agencies working with families with young children as well as planners of newer residential areas.     

Characterizing the systems of support for families of children with disabilities: A review of the literature

ABSTRACT

During early childhood, children require major support that is tailored toward their specific needs. For children with disabilities, families play a crucial part in providing the needed services. However, families often lack the knowledge, resources, and skills that would help them in overcoming challenges that arise while raising a child with disability. Although much research has focused on defining the needs of families with children with disabilities and the impact of disability on the family system, many questions remain. A comprehensive perspective is needed to identify the types of support families provide to the child with a disability, the impact of providing that support on family members, the support systems that are available to families, and the impact of support on society. This review consolidates the empirical research to date on family support during early childhood and outlines areas of research that need further exploration.     

Stressors and life goals of caregivers of individuals with disabilities

Caregivers of individuals with disabilities can experience stress as they manage caregiving responsibilities while they attempt to balance family, work, and the satisfaction of their personal goals. In this pilot study, 31 caregivers of individuals with a variety of disabilities completed a quantitative-qualitative survey. A statistically significant relationship was found between the age and severity of disability of the family member receiving care, the length of time care had been provided, the educational level and the relationship of the caregiver to the family member and reported feelings of optimism, humbleness, quality of family relationships, financial concerns, loss of control, and hope. When life goals were probed, the most common reported were achieving financial stability, having a strong, healthy family, and experiencing happiness. The implications for supporting caregivers and their families are discussed.     

The family caregiving context among adults with disabilities: A review of the research on developmental disabilities,serious mental illness,and traumatic brain injury

ABSTRACT

A majority of adults with serious disabilities are cared for in the home by family members. Guided by an ecological framework, this article presents the findings of a literature review of research on family caregiving and family support for adults with disabilities. This review included 33 research studies published between 2000 and 2015 focused on three disabilities: Developmental disabilities, serious mental illnesses, and traumatic brain injury. A synthesis of the findings underscores the critical role that family caregivers occupy in addressing the needs of their loved one with a disability; however, the needs of the caregiver are insufficiently met by existing service approaches. A better understanding of the unique needs and strengths of the family support context of caregivers and care recipients is needed, giving greater attention to ethnic, racial, and cultural considerations in future research.     

Evaluating Services for Kinship Care Families: A Systematic Review

Despite their needs, kinship care families receive less support and fewer resources than other foster care families. This study systematically reviews thirteen studies that evaluated services and programs for kinship caregivers and children. Studies evaluating the effectiveness of the Kinship Navigator Program, financial assistance, support services, and training/educational programs were identified and reviewed. The Levels of Evidence-Based Intervention Effectiveness (LEBIE) scale was used to evaluate the research designs. The findings indicate that although positive results are shown for enhanced well-being and permanency outcomes of children and kinship caregivers, the rigor of the research designs are low, making it difficult to draw any firm conclusions about the effectiveness of these programs. Recommendations for child welfare practice and future research include the need to develop services for informal caregivers and particular racial/ethnic groups. In addition, more rigorous research designs and qualitative research should be conducted to support the effectiveness or social validity of the services and to inform evidence-based practice.     

Family Life With Children With Disabilities: The Key Role of Rehabilitation

This study examines the effects of children's medical impairments and functional disabilities and the use of medical care and rehabilitation on three family consequences (job changes, severe financial problems, and sleep disruptions). We use a life course perspective on the interlinked lives of family members, countertransitions, and career contingencies to understand the family impact of child disability. Using data from the 1994 and 1995 National Health Interview Surveys (N= 3,446), we find that the rehabilitation services that children receive account for (mediate) a large part of the observed association of children's medical impairments and disabilities on these family outcomes. Assistance in obtaining rehabilitation for children with disabilities could reduce the family costs and disruptive countertransitions associated with raising children with disabilities.     

Assessing Family Outcomes: Psychometric Evaluation of the Beach Center Family Quality of Life Scale

There is currently a lack of reliable scales with which to assess the construct of family quality of life, particularly for families who have children with disabilities. The current work presents 2 studies, including a total of 488 families with children with disabilities, which were conducted to complete the development of a scale to assess family quality of life. The measure was refined through confirmatory factor analyses into 25 items that assess 5 domains of Family Quality of Life: Family Interaction, Parenting, Emotional Well‐Being, Physical/Material Well‐Being, and Disability‐Related Support. Each subscale was found to be unidimensional and internally consistent. An initial examination of test‐retest reliability and convergent validity is also presented. Implications for future research, scale use, and policy are discussed.     

A preventive services program model for preserving and supporting families over time

Selected findings from a three-year study are reported regarding a prospective sample of 189 families served by the Center for Family Life's preventive services program and the nature and results of the services the families received. The program combines elements of both family preservation and family support services to provide a comprehensive, individualized response to families in need and prevent the unnecessary placement of children in care. Four program elements correspond with those typically identified as characterizing family preservation programs, and three key program elements differentiate the Center's approach from other family preservation programs. These latter characteristics are more typically found in family support programs and address limitations of current family preservation programs as identified in the literature.     

Brief online surveys to monitor and evaluate facilitated peer support groups for caregivers of children with special needs

BackgroundThere have been few systematic evaluations of experiences of participating in peer support groups for parents and other caregivers of children with special needs. In Australia, facilitated groups are available to caregivers in community settings, through a nationally funded program, MyTime. Mechanisms for ongoing monitoring and evaluation have not yet been instituted.AimTo establish whether brief, online surveys can be used for monitoring and evaluating peer support groups for caregivers of children with special needs.MethodsTwo brief, online surveys, with both fixed-choice and open-ended questions, were developed. All caregivers who attended any MyTime group during a 1-month period were invited to participate.ResultsOf 89 caregivers who expressed interest in participating, 54 and 31 respondents completed respectively. Respondents represented a variety of backgrounds and circumstances. Responses revealed both positive and negative aspects of group participation. Linked data on expectations and experiences provided important feedback for the program.ConclusionBrief, online surveys are a suitable mechanism for ongoing monitoring and evaluation of peer support group programs for caregivers.     

For whom the bell tolls: The institutionalization of homeless families in america

A peek through the doors of New York City's Emergency Assistance Unit (EAU), the entryway into the City's family shelter system, presents a shocking snapshot of life for the poorest of America's welfare families: the homeless. Burgeoning with young single mothers and children sitting on floors and sleeping in chairs as they wait for someone to send them on to temporary shelter, the EAU offers a vivid example of the overburdened institutions of support on which poor families depend daily.     

Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: Considerations for service development

Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programs for older carers occupied a unique place within the service system. The present paper discusses a study that further explored the functions of specialist programs for this group through a comparsion with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.     

Family Caregivers for Seniors in Rural Areas

In this article, the demographic characteristics of family caregivers for seniors in rural communities are assessed to examine whether their circumstances could facilitate or impede their well-being. Services available in rural communities for family members providing ongoing care to frail seniors is examined, particularly those that provide health and social services. How families access these services and whether there are specific barriers in service provision are analyzed based on current social work practice and the research literature. Trends for future services are identified as well as whether these trends support new roles for social workers in rural settings.     

‘No one believed us: no one came to help’: caregivers' experiences of violence and abuse involving children with fetal alcohol spectrum disorder

Child and adolescent-to-parent violence and abuse (CAPVA) refers to abusive and violent behaviours by children towards their parents or primary caregivers. The abuse and harmful behaviours can include a full range of physical, emotional, verbal, financial, and material actions over prolonged periods of time, from childhood to young adulthood. Parents and caregivers of children with neuro-developmental conditions are vulnerable to CAPVA, and little research has been undertaken exploring the experiences of caregivers of children with fetal alcohol spectrum disorder (FASD). In Aotearoa New Zealand, 56 caregivers were interviewed using semi-structured interviews, and over half identified significant levels and impacts of CAPVA, including dealing with physical violence and frequent emotional abuse. Health and stress issues were present in all caregivers interviewed. Caregivers also identified how systemic ignorance and a lack of understanding from caring professionals led to parent blaming, a sense of shame and isolation. Yet, caregivers also showed resilience and implemented strategies of de-escalation and distraction. More specialised practice is needed in this emerging field of family violence and in how to support families with children who have FASD.     

Single Parenting in Families of Children with Disabilities

Rearing a child with disabilities is a challenge, per- haps even more so for single parents who most often are women. Stress and negative psychological effects have been considered likely outcomes for parents of children with disabilities. With the increased family focus in the provision of services for children with disabilities, it becomes even more important to understand the sources of stress and the types of adaptations made in these families. The research literature was analyzed and similar results were found. Single mothers of children with disabilities often were younger, had less education, and lower incomes. Few studies included these socio- economic factors. Findings indicate that gross differences betweensingle- and two-parent mothers tended to become nonsignificant when maternal education and income were taken into account. Stress levels and adaptation were not pervasively different for single mothers and mothers who were parenting with a partner, after SES variables were controlled. On a few dimensions-including family harmony, integration, and cohesion-some studies found mothers in single parent families to be at a slight disadvantage relative to two parent families. Research findings indicate that other factors need to be considered in research and in provision of services to understand the interplay between stress and adaptation and to facilitate the fami- lys coping. Further study is needed on factors on two levels; task demands and emotional responses, the diversity among mothers, their life situations, and their task demands must be recognized, and socioeconomic conditions and participation by other adults in care- giving. Positive adaptation by single mothers of children who have disabilities is a reasonable expectation; services should build upon family strengths and competencies.