Family-oriented services are not as common as one would expect, given the widespread endorsement of family-centred care, the role of parents in supporting optimal child outcomes, and legislation and literature indicating that parent outcomes are important in their own right. There are no published service delivery frameworks describing the scope of services that could be delivered to promote parent and family wellness. A scoping review was conducted to identify types of family-oriented services for parents of children with physical disabilities and/or intellectual impairments. This information was then synthesized into a conceptual framework of services to inform service selection and design. A scoping review of the recent literature was performed to capture descriptions of services targeting parents/families of children with physical disabilities and/or intellectual impairments, published in a six-year period (2009 to 2014). Six databases were searched and 557 retrieved articles were screened using inclusion and exclusion criteria. Thirty six relevant articles were identified. Based on descriptions of services in these articles, along with seminal articles describing the nature of desirable services, we propose a needs-based and capacity-enhancing framework outlining a continuum of family-oriented services for parents of children with disabilities. The framework includes six types of services to meet parent/family needs, organized as a continuum from fundamental information/education services, to those supporting parents to deliver services to meet their child's needs, to a variety of services addressing parents' own needs (support groups, psychosocial services and service coordination). The framework provides pediatric rehabilitation service organizations with a way to consider different possible family-oriented services. Implications include the particular importance of providing information resources, support groups and psychosocial services to meet parents' needs, enhance capacity and promote family wellness. There is also an opportunity to provide composite parent-child services to address the needs of both parents and children.

Family-oriented services in pediatric rehabilitation: a scoping review and framework to promote parent and family wellness.

PURPOSE: To determine the impact of brachial plexus injuries on families to best meet their clinical and social needs METHODS: Our cross-sectional study included families with children between the ages of 1 and 18 years with birth or non-neonatal brachial plexus injuries (BPIs) The consenting parent or guardian completed a demographic questionnaire and the validated Impact on Family Scale during a single assessment Total scores can range from 0 to 100, with the higher the score indicating a higher impact on the family Factor analysis and item-total correlations were used to examine structure, individual items, and dimensions of family impact RESULTS: A total of 102 caregivers participated Overall, families perceived various dimensions of impact on having a child with a BPI Total family impact was 43 The 2 individual items correlating most strongly with the overall total score were from the financial dimension of the Impact on Family Scale The strongest demographic relationship was traveling nationally for care and treatment of the BPI Severity of injury was marginally correlated with impact on the family Parent-child agreement about the severity of the illness was relatively high CONCLUSIONS: Caretakers of children with a BPI perceived impact on their families in the form of personal strain, family/social factors, financial stress, and mastery A multidisciplinary clinical care team should address the various realms of impact on family throughout the course of treatment TYPE OF STUDY/LEVEL OF EVIDENCE: Prognostic II Language: en

The Impact of Pediatric Brachial Plexus Injury on Families

PURPOSE:To explore parent experiences with participation in splinting programs for their child with a congenital limb anomaly in the child’s first year of life. While parent participation is recognized as integral to successful outcomes of splinting programs for these children, little is known about factors influencing their participation. METHODS: Through purposive sampling, 10 families recruited from outpatient clinics at a pediatric tertiary care facility participated in semi-structured interviews in this qualitative study utilizing interpretive description methodology. Constant comparative and concurrent data collection and analysis were employed. RESULTS: Themes identified: (1) An experience of adjustment; (2) The value of timely and comprehensive information; (3) Appreciation of support networks; and (4) Characteristics unique to splinting programs. Practical suggestions for program enhancements are outlined. CONCLUSIONS: Addressing parents’ information, support, and individual needs are keys to promoting active parent participation in their child’s splinting program, contributing to positive outcomes for their child.

Parents' experiences of splinting programs for babies with congenital limb anomalies.

Chronic handicap in early life may have a long-term impact on children's psychosocial well-being. Here, we investigated whether Brachialis Plexus Birth Injury (BPBI)-an unpredictable injury at birth-is associated with worse mental health later on, as indicated by prescription and use of psychotropic drugs in adolescence. We explored further whether this association is different depending on socioeconomic characteristics of the child's family, as well as sex. Of the 641 151 children born to native parents in Sweden 1987-1993 (alive and still living in Sweden at the end of 2008), identified in the Swedish Medical Birth Registry, 1587 had suffered a BPBI. Logistic regression analysis was performed to assess the impact of socioeconomic characteristics and associations with later psychosocial health. Results show that beyond the known increased risks for females as compared to males, BPBI, but also lower family income, further increased the risk of burdened mental health requiring psychotropic drug use in adolescence. The effects were additive. Thus, compared to unaffected peers, teenagers who suffered a BPBI at birth are at higher risk of suffering poor mental health during adolescence, independently of surgical intervention and its outcome. Girls growing up in families with lower socioeconomic status have this risk added to their already increased risk of poor mental health during adolescence.

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Psychotropic drug use as indicator of mental health in adolescents affected by a plexus injury at birth: A large population-based study in Sweden.

BACKGROUND Different cultural backgrounds and parental experiences influence parenting styles and approaches to raising children with disabilities. Family-centered care should consider parental, especially main caregivers, experiences with their disabled children. In Taiwan, in most of homes, mothers are the main caregivers. PURPOSE The purpose of this study was to explore Taiwanese mothers' experiences with their children who have sensory processing disorder. METHODS This study used a qualitative ethnographic design and semistructured interview format. Transcripts were analyzed and synthesized into themes. RESULTS Three mothers were interviewed. The following three themes emerged: (a) relationships within the shared worlds of disability and culture, (b) daily life challenges and expectations, and (c) opportunity to receive professional services. These Taiwanese mothers expressed that they experienced stress from being blamed for insufficient skills and from the shame of their children's disabilities that reflected lack of teacher, friend, and other family members' understanding of the cause of their children's inappropriate behaviors. Their children experienced difficulties performing daily activities, which resulted in stresses on both the mother and her child. The interviewed mothers needed to receive timely, long-term services from healthcare professionals. However, hospitals are inadequately staffed with occupational therapists, which delays care for children with special needs. CONCLUSION Taiwanese mothers experience stresses from themselves, their child, and others. Healthcare professionals should apply a family-centered service approach to fulfill the needs of mothers and their disabled children. Moreover, healthcare professionals should promote greater awareness of sensory processing disorder symptoms and interventions to increase public awareness and acceptance of these children.

Preliminary study: Taiwanese mothers' experiences of children with sensory processing disorder.

Children with obstetrical brachial plexus palsy may have chronic physical impairment in their affected upper extremity. Affected children and their families may benefit from psychosocial interventions including therapeutic relationships with health professionals, meeting other families living with obstetrical brachial plexus palsy, support groups, and social work. One method of addressing psychosocial needs is through a support and education day. The purpose of this quality improvement project is to evaluate parental perceptions of a support and education day called the "Brachial Plexus Family Day." Families of children with obstetrical brachial plexus palsy who attended the Brachial Plexus Family Day completed a questionnaire to evaluate the different programs offered during the day. The families also ranked the importance of different psychosocial supports offered in the clinic. Sixty-three out of 69 families completed the questionnaire. Each program of the Brachial Plexus Family Day was rated as good or excellent by the respondents. Ninety-seven percent of respondents rated meeting other families and children with obstetrical brachial plexus palsy as helpful supports. Attending a Brachial Plexus Family day event (86%), followed by connecting with a doctor (60%), and physical or occupational therapist (59%) were the highest ranked supports reported by the families. The parents and caregivers that attended the Brachial Plexus Family Day rated the program highly. This group also valued the opportunity to connect with other families and children affected with the same condition.

Emily S Ho

Papers

Evaluation of an education day for families of children with obstetrical brachial plexus palsy