Supporting family engagement with child and adolescent mental health services: A scoping review

A key challenge facing the mental health field is connecting children and families to services when symptoms first appear. Multiple barriers inhibit timely access to treatment, and interventions to resolve barriers to care are not common among health and social care organisations. To address this research‐to‐practice gap this study undertook a scoping review of the empirical literature aimed at identifying key factors in the social ecology of families which influence family engagement with child and adolescent mental health services, then identifying and describing models of intervention designed to help facilitate access to care. Forty studies published between 1 January 2000 and 28 February 2019 were reviewed. Key factors associated with child and adolescent mental health service engagement included family attitudes towards mental illness and help seeking, the flexibility and availability of needed services, community attitudes and stigma surrounding mental illness and mental health treatment, and the degree of coordination and integration across systems of health and social care. Models of intervention to facilitate engagement with mental health services included family outreach, telephone and digital health strategies, and integrated care approaches. Empirical support is strongest for family outreach and integrated care, although telephone and digital health strategies are underexplored with children and families and a potentially promising avenue for future research. To support family engagement with child and adolescent mental health services health and social care organisations should be prepared to identify barriers in their local practice settings and integrate efficacious engagement approaches into their continuum of available services.     

Narrowing the income gaps in preventive care for young children: Families in healthy steps

Persistent unmet preventive and developmental health care needs of children in low-income families are a national concern. Recently, there have been efforts to promote developmental services as part of primary care for all young children. However, there is limited research to determine whether the neediest families are well in universal interventions. In our study, we assessed if disparities persist in utilization of developmental services, well child care, and satisfaction with care among low-, middle-, and high-income families participating in Healthy Steps for Young Children. Healthy Steps is a national experiment that incorporated developmental services into primary care for children from birth to 3 years of age. In the United States, 15 pediatric practices participated in this prospective study. At birth, 2,963 children were enrolled between September 1996 and November 1998 and followed through 33 months of age. The utilization of developmental services, satisfaction with care, and receipt of age-appropriate well child visits were measured at 30–33 months and adjusted for demographic and economic covariates. We found that the adjusted odds of low-income families did not differ from high-income families in receipt of four or more Healthy Steps services, a home visit, or discussing five or more child rearing topics. Low- and middle-income families had reduced adjusted odds of receiving a developmental assessment and books to read. The adjusted odds of low- and middle-income families did not differ from high-income families in being very satisfied with care provided or receiving age-appropriate well child visits. A universal practice-based intervention such as Healthy Steps has the potential to reduce income disparities in the utilization of preventive services, timely well child care, and satisfaction with care.     

Predictors of Initial Engagement in Child Anxiety Mental Health Specialty Services

Background

Child and family mental health services remain largely underutilized despite the relatively high rate of youth suffering from mental, emotional, and behavioral disorders. As such, it is important to address challenges and examine factors related to child mental health service use and engagement, especially when it comes to children in need of services for anxiety.

Objective

Informed by the behavioral model of health services use, the present study sought to examine predictors of service use and engagement for families seeking assistance for their anxious children. Initial levels of engagement in culturally tailored services were predicted from predisposing characteristics (e.g., child age, ethnicity), enabling resources (e.g., Spanish services, transportation), and need characteristics (e.g., child clinical severity).

Methods

Participants included Latino (n = 126) and Caucasian (n = 116) families who presented to a specialty clinic due to child emotional and behavior problems related to anxiety. Initial service utilization and engagement was assessed along the following levels toward services care: (1) initiated contact and completed a clinical intake, (2) completed a home screen, and (3) completed an on-site diagnostic assessment. All procedures were culturally tailored to the presenting needs of families.

Results

Predisposing characteristics, enabling resources and need characteristics emerged as significant predictors of child mental health service use, with some variations. Child age, ethnicity, referral source, and enabling resources predicted completion of a home screen. Proximity to services predicted completion of the on-site diagnostic assessment.

Conclusion

Knowledge of factors that predict engagement in child mental health services can help identify avenues to promote service utilization, especially among ethnic minority children and families. Our culturally tailored approach to serving families appears to be promising in bridging the cross-ethnic services gap and therefore has implications for practice.     

When the bough breaks: provider-initiated comprehensive care is more effective and less expensive for sole-support parents on social assistance.

This 5-year study conducted in Ontario, Canada is designed to assess the effects and expense of adding a mix of provider-initiated interventions to the health and social services typically used in a self-directed manner by sole-support parents and their children receiving social assistance in a national system of health and social insurance. Results from a 2-year interim analysis show that providing social assistance families with proactive comprehensive care (health promotion, employment retraining, and recreation activities for children) compared to allowing families to fend for themselves in a self-directed manner, results in 15% more exits from social assistance within 1 year and substantial savings to society in terms of social assistance payouts. It is no more expensive to provide health and social services in a comprehensive fashion, and equivalent reductions in parent mood disorder and child behavior disorders, as well as equivalent increases in parent social adjustment and child competence levels were also observed. This study presents clear evidence that providing comprehensive care to social assistance recipients produces tremendous short- and long-term financial gains and societal benefits.     

Unmet Need and Problems Accessing Specialty Medical and Related Services Among Children with Special Health Care Needs

OBJECTIVES: To extend what is known about parent reports of their child's need for specialty medical and related services, unmet need, and specific types of access problems among children with special health care needs (CSHCN). METHODS: Using data from a 1998-1999 20-state survey of families of CSHCN, we examined differences in parent report of need for services by child characteristics, investigated parent report of unmet need and access problems by service area and number of services needed, and estimated the likelihood of four access problems and unmet need by child, family, and health insurance characteristics. RESULTS: Overall, the sample children had numerous service needs, although the prevalence of need varied by service type and child characteristics. Reports of unmet need were greater for older children and for children with multiple service needs, unstable health care needs or a behavioral health condition, parents who were in poor health or had more than a high school education, and families whose insurance coverage was inconsistent or lacked a secondary plan. Reports of access problems were greatest for mental health and home health services. The two most prevalent access problems were finding a skilled provider and getting enough visits. CONCLUSIONS: The results underscore the importance of finding new ways to link children with behavioral health problems to mental health services, implementing coordinated care and the other core dimensions of the medical home concept, increasing the number of specialty pediatricians and home health providers, and expanding coverage for a wider range of mental health services.     

Child Care: A Synthesis of Research

Four popular child care settings are family day care homes, care centers, relative care, and in-home care by non-relatives. Quality indicators in child care include curriculum that features child-centered developmental activities; responsive, sensitive, and affectionate caregivers; limited group size; low adult-child ratio; staff training and stability; parent involvement; and comprehensive social services such as health and nutrition. Children from low-income families who have received child care have shown short-term cognitive effects (e.g. immediate and positive intellectual gains and better preparation for entry into school); long-term cognitive effects (e.g. fewer grade retentions, reduced placement in special education classes, and greater high school completion and employment rates); and social-emotional effects (e.g. better self-esteem, higher ratings in social and emotional maturity, less antisocial behavior, and lower crime rate). Research indicates that child care may enhance social and intellectual development for middle class children as well as disadvantaged children.     

Factors Associated with Ease of Using Community-Based Systems of Care for CSHCN in Hawai’i

Objectives: To study factors contributing to difficulty using community-based services by families of children with special health care needs (CSHCN) in Hawai’i. Methods: Data source was the 2001 National Survey of Children With Special Health Care Needs. The study population included the 449 respondents who were surveyed after additional items were added to the original questionnaire. Outcome of interest was “% of CSHCN whose families report community-based service systems are organized so they can use them easily.” Explanatory variables included child health conditions (functional limitation, degree of severity, types of service needs), child and family characteristics (child age, maternal education, poverty level), and health services characteristics (partnership of family in decision making, family-centered coordinated care, adequate health insurance). Results: Children with special health care needs comprised 11.0% of < 18 years old children. Overall, 69% of respondents reported that community-based services could be used easily. Logistic regression analysis showed that the odds of reporting difficulties in using community-based services were almost 5 times higher for families who did not partner in decision making, 2.9 times higher for families who did not receive family-centered coordinated care, and 2.7 times higher for families who did not have adequate health insurance compared with families who were satisfied with the care received. Need for services contributed independently to reporting difficulties in community-based service use. Contrary to the hypothesized associations, severe health conditions or limited functionality did not contribute significantly to reporting difficulties in service use. Conclusions: Families who reported difficulties in using community-based services were those who have children who need extensive and varied services. Lack of involvement in decision making, lack of coordinated care in a medical home, and insufficient health insurance were the main obstacles to their ability to use community-based services easily.     

Permanency Options and Goals: Considering Multifaceted Definitions

This qualitative study examined permanency goal-setting and permanency outcomes for children in the New York City foster care system. Interviews were conducted with young adults formerly in foster care, birth parents of children formerly and currently in foster care, adoptive parents, and child welfare professionals. Findings indicated the need to individualize permanency goals, emphasize the emotional and relational aspects of permanency, and engage youth and parents more fully in permanency goal-setting. Recommendations are advanced for improving permanency services to better meet the needs of children and families.     

A Multi-Method Assessment of Satisfaction with Services in the Medical Home by Parents of Children and Youth with Special Health Care Needs (CYSHCN)

OBJECTIVE: To assess satisfaction of parents of children with special health care needs with treatment by office staff, communication with the pediatrician, involvement in decision-making and coordination of services outside the practice. PATIENTS AND METHODS: We used a mixed-method (qualitative and quantitative) approach to collect parental perceptions of the Medical Home services provided by their pediatricians. Six practices were selected to participate in the study based on geographic and patient demographic characteristics. In total, 262 (75% response rate) families completed surveys, and 28 families of these participated in focus groups. The Family Survey collected information (corroborated and enriched with focus group interviews) on parent and child demographics, severity of the child's condition and the burden on parents. We assessed parental satisfaction with treatment by office staff, communication with the pediatrician, involvement in decision-making, and connection to services outside the practice. Survey responses were analyzed using SAS with all associations considered significant at the P < 0.05 level. Focus groups were recorded, transcribed into EZ-Text and analyzed by a team of three researchers to identify patterns and themes inherent in the data. RESULTS: Families reported in focus group interviews that they experienced significant stress due to the demands of caring for a child with special health care needs. Overall, only a small percentage of families reported being dissatisfied with their treatment by office staff (13-14%), communication with the pediatrician (10%), and involvement in decision-making (15-16%). However, a majority of families (approximately 58%) were dissatisfied with the ability of the pediatrician and his/her office to connect the families with resources outside the pediatric office. Families whose children had more severe conditions, or whose conditions had more of an impact on the families, reported being less satisfied with all aspects of communication and care coordination Families of youth with special health care needs (>12 years of age) were less satisfied than families of younger children with the practice's ability to connect them to resources outside the practice. CONCLUSIONS: Both the focus groups and surveys demonstrated that families of children with special needs are under very significant stress. Pediatricians must become better equipped to identify and communicate more proactively with families of CYSHCN that are experiencing significant parent burden. Pediatricians and their staff also need to improve their knowledge of community resources and proactively make referrals to community services needed by families of CYSHCN.     

Needs in rare diseases during paediatric age

All rare diseases present a common set of challenges to the sufferers and their families: diagnosis, dealing with symptoms, health information, obtaining helpful medical care, availability of medications, disability and emotional impact. Children with rare disorders are an important population from health care services, and social services perspectives, and families are providing long-term care for these chronically ill children. The impact of rare disorders in children is far-reaching, extending beyond the child to all those with whom he/she has contact. Multiple facets of life are affected including social an family relationships, economical well-being and activities of daily living. The assessment of needs for rare disorders treatment is a critical step in providing high quality care and achieving patients' and families' satisfaction. Findings from different studies show that people with rare diseases have medical and social needs. Social needs are becoming more relevant in developed countries where health care services, even with limitations, have greater availability than social services. Furthermore, it seems that health care and social services for persons with rare diseases need to be improved to address the patients' needs and to provide better support to families. Validated tools with good psychometric properties are still needed to assess quality of care on the basis of patients and family needs.     

The role of maternal and child health clinics in education and prevention: a case study from Papua New Guinea

This paper describes a behavioural study of the infant nutrition and family planning education components of selected maternal and child health clinics in Madang Province in Papua New Guinea. Staff of six (6) clinic teams were observed during 18 rural and urban clinics and the content and length of the nurses' interactions with the 254 mothers of 340 children recorded. Three-quarters (71%) of the interactions took less than 2 minutes. Family planning advice was rarely given. The amount of time the nurse spent with mother and child primarily depended on whether the child was sick or well, rather than on his/her nutritional status. Nutritional advice, when offered (to mothers of 27% of children below 80% WFA), was given in response to WFA alone, independently of health status, age and rate of growth. It is suggested that the low priority given to nutrition and family planning education is the result of inadequate supervision, complex reporting systems, the routine nature of the work, preference of nurses for structured clinical tasks and nurses' attitudes to clients and contraception. Clinics would be more effective if oriented around problems rather than tasks, and families rather than individuals. This would also give nurses the satisfaction of seeing the goals and results of their work. It is suggested that the MCH system would benefit from innovative pilot programmes which address the special problems of remote areas and derive from primary health care principles.     

An Evaluation of an Integrated Health Care Program for Children With Special Needs

This study was designed to evaluate a program integrating physical and mental health services for children with special health care needs. Clinical outcomes were assessed by comparing families in integrated clinics (N = 80) with families in traditional clinics (N = 36). Parents and children ages 8 to 16 completed a series of questionnaires to assess differences in child behavior and coping, parents' perceptions of child vulnerability, and parent well-being and coping. Demographic variables and child's health status were also assessed with questionnaires and controlled for in subsequent analyses. There were no differences between groups on demographic variables or health status, though children in the integrated clinics had been diagnosed at an earlier age. Parents in the integrated program reported significantly fewer behavioral symptoms than parents in the nonintegrated clinics. Significantly fewer children from integrated clinics were in the clinical range for poor school functioning compared to children in nonintegrated clinics. No differences emerged in coping or parent well-being. Results provide preliminary support for integrating health and mental health care services for children with special needs. Suggestions for improving future evaluation efforts and clinical practice are discussed.     

An Evaluation of an Integrated Health Care Program for Children With Special Needs

This study was designed to evaluate a program integrating physical and mental health services for children with special health care needs. Clinical outcomes were assessed by comparing families in integrated clinics (N = 80) with families in traditional clinics (N = 36). Parents and children ages 8 to 16 completed a series of questionnaires to assess differences in child behavior and coping, parents' perceptions of child vulnerability, and parent well-being and coping. Demographic variables and child's health status were also assessed with questionnaires and controlled for in subsequent analyses. There were no differences between groups on demographic variables or health status, though children in the integrated clinics had been diagnosed at an earlier age. Parents in the integrated program reported significantly fewer behavioral symptoms than parents in the nonintegrated clinics. Significantly fewer children from integrated clinics were in the clinical range for poor school functioning compared to children in nonintegrated clinics. No differences emerged in coping or parent well-being. Results provide preliminary support for integrating health and mental health care services for children with special needs. Suggestions for improving future evaluation efforts and clinical practice are discussed.     

儿童保健服务利用受益归属分析

目的对儿童保健服务利用进行受益归属分析,了解儿童保健服务的受益人群和受益程度。方法共调查989名儿童。运用Kakwani指数、利用需要比和集中指数等方法进行受益归属评价。结果儿童保健各项服务利用总体上是低经济收入组受益多。不同保健服务项目在不同母亲文化程度组间受益不同,产后访视低母亲文化程度组受益更多。在儿童健康体检服务利用上农村儿童受益更多。结论加强对儿童保健服务利用受益较少人群的关注,从经济政策支持和健康教育等方面入手,提高低收入家庭和低文化程度家庭儿童保健服务的利用率,促进利用均等化。     

The impact of a family-centered case management approach.

Two urban programs of family-centered case management services were established for families of children with both a developmental disability and a chronic health condition. These are children who present significant caregiving demands due to the long-term and severe nature of their disabilities. Thirty-two mothers were interviewed within the family's first month in the project and reinterviewed approximately one year later. The results indicate that more families received respite care, nursing services, training in the care of the child, educational services and transportation to school at follow-up than had been receiving those services at baseline. However, families still indicated high service needs for recreational activities, life planning, regular day care, legal services, and speech therapy at follow-up. Mothers indicated that program services were helpful in obtaining services, financing, information, support, and advocacy. Although maternal life satisfaction improved with program participation, non-handicapped siblings continued to have difficulties coping. The model employed is described and the practice and policy implications of the findings discussed.     

The young handicapped child in the community

Despite recent improvements in services for young handicapped children, families still find themselves without adequate information and support. Fundamental to family support is the planning of joint services and the development of the concept of family support. Assessment must be linked to ongoing programmes of management and the setting of long-term goals. Parent/professional collaboration should ensure the more effective use of resources. Parents need encouragement and detailed support and guidance if they are to play a therapeutic role in caring for their child. They also need practical help, both financial and in the form of respite care. Since the family is the major caring agency for a handicapped child, it is essential that expertise and services are pooled in a more flexible and imaginative way. It is therefore essential that children who have a disability should enjoy positive discrimination from health, education and social services to maximise ability and to ensure that they can enjoy a meaningful life within the home and the community.     

The young handicapped child in the community

Despite recent improvements in services for young handicapped children, families still find themselves without adequate information and support. Fundamental to family support is the planning of joint services and the development of the concept of family support. Assessment must be linked to ongoing programmes of management and the setting of long‐term goals. Parent/professional collaboration should ensure the more effective use of resources. Parents need encouragement and detailed support and guidance if they are to play a therapeutic role in caring for their child. They also need practical help, both financial and in the form of respite care. Since the family is the major caring agency for a handicapped child, it is essential that expertise and services are pooled in a more flexible and imaginative way. It is therefore essential that children who have a disability should enjoy positive discrimination from health, education and social services to maximise ability and to ensure that they can enjoy a meaningful life within the home and the community.