Childhood Disability Services Research Articles

Fathers of children with a disability: health, work, and family life issues

Purpose Fathers in families raising children with disabilities are under-researched. Fathers’ perspectives can be better accommodated in childhood disability services that operate on a family-centred paradigm if their perspectives are understood. This study aimed to investigate the perspectives of fathers on caring and family life, work, and health. Methods A mixed-methods design with an online questionnaire included open-ended questions and three instruments: Depression Anxiety Stress Scales (DASS); Health Promoting Activities Scale (HPAS-M); Fathers of Children with Developmental Challenges (FCDC) Scale. Results Fathers (n = 33) reported high depressive (58%), anxiety (37%), and stress symptoms (61%). Fathers reported low participation in health-promoting activity with less than weekly: planning health activities (58%); solo physical activity (26%); social activity (3%); time relaxing (16%). Sixty-four percent worked full-time, although work was reported to be challenged by family responsibilities. Fathers described directly caring for their children although service interactions were low and delegated to mothers. Conclusions Fathers in this study reported stress, mental health issues, and low participation in healthy activity. Fathers experienced challenges related to career progression and job choices due to family responsibilities. Providing individualised and responsive support to fathers of a child with a disability would better support the family unit. IMPLICATIONS FOR REHABILITATION Fathers of children with a disability in this study experienced high mental health symptoms. Fathers were involved with their child’s care at home but had low service interactions suggesting that service providers need to discover new ways to better engage fathers. Fathers experienced challenges to participation in paid work secondary to care responsibilities for their child with a disability and resulting needs of their family. Services that better support fathers are important to promote better health and wellbeing and support families.

Let’s not go back to ‘normal’! lessons from COVID-19 for professionals working in childhood disability

Purpose The worldwide COVID-19 pandemic has changed almost all aspects of our lives, and the field of childhood disability is no exception. Methods This article is based on an invited lecture by the first author at a conference–the eHealth Summit (“Pediatric Rehabilitation in a Digital Space”)–organized by the other authors and their colleagues in May 2020. Results The first author offers his own experiences and perspectives, supplemented by comments and observations contributed by many of the 9000+ attendees at this talk, as curated by the second and third authors. The basic messages are that while life for families of children with developmental disabilities, and for service providers who work with them, is significantly altered, many important lessons are being learned. Conclusions The comments from participants support the currency of the ideas that were presented, and encourage childhood disability professionals to reflect on what we are learning, so that we can seize the opportunities they afford to do things differently–and we believe better–moving forward. IMPLICATIONS FOR REHABILITATION Ideas generated by colleagues and parents suggest that there may be alternatives to “business as usual” in childhood disability services after the COVID pandemic is over. People are recognizing opportunities, and benefits, to offering services virtually, including being able to see children in their natural environments, saving parents time, money and hassles to attend clinics in person, and perhaps increasing the availability of services. Many issues remain to be investigated systematically, including, among others, what services (assessments and interventions) require hands-on connections, what payment structures can accommodate new models of services, how professionals can work together in a virtual world, and what families will want. Regardless of the final answers to these issues, we believe that we should not simply “go back to normal”; rather, we should expand the range, nature and locations of our services for children with developmental disabilities and their families.

Is the right to early intervention being honoured? A study of family experiences with early childhood services

This article presents an empirical study of family interactions with childhood disability and early years services in Ontario, Canada, with a focus on whether the right to early intervention is being honoured. International mandates, national legislation, and local policies have increased global awareness of the rights of children to be provided with environments for optimal healthy development and education, including the right to early intervention. The right to early intervention is articulated by the United Nations in several international declarations and conventions. Article 20 of the Convention on the Rights of the Child (CRC, 1989) was the first convention to use the term disability. It specifically addresses the particular rights of disabled children, with articulation of the right to “enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance, and facilitate the child’s active participation in the community” (A.20, s.1, 1990). Further, the CRC clearly states that children have the right to special care and assistance for both the child and the service providers working with the child. Services are to be delivered free of charge in order to ensure that the child has access to education, training, health care, rehabilitation, preparation for employment, and recreation services. In all cases these services must consider the fullest social integration and individual development that is consistent with cultural and spiritual beliefs (A.20, s.2-4).

‘Doing the hard yards’: carer and provider focus group perspectives of accessing Aboriginal childhood disability services

BackgroundDespite a high prevalence of disability, Aboriginal Australians access disability services in Australia less than non-Aboriginal Australians with a disability. The needs of Aboriginal children with disability are particularly poorly understood. They can endure long delays in treatment which can impact adversely on development. This study sought to ascertain the factors involved in accessing services and support for Aboriginal children with a disability.MethodsUsing the focus group method, two community forums, one for health and service providers and one for carers of Aboriginal children with a disability, were held at an Aboriginal Community Controlled Health Service (ACCHS) in the Sydney, metropolitan area of New South Wales, Australia. Framework analysis was applied to qualitative data to elucidate key issues relevant to the dimensions of access framework. Independent coding consistency checks were performed and consensus of analysis verified by the entire research team, several of whom represented the local Aboriginal community.ResultsSeventeen health and social service providers representing local area government and non-government-funded health and social service organisations and five carers participated in two separate forums between September and October 2011. Lack of awareness of services and inadequate availability were prominent concerns in both groups despite geographic proximity to a major metropolitan area with significant health infrastructure. Carers noted racism, insufficient or non-existent services, and the need for an enhanced role of ACCHSs and AHWs in disability support services. Providers highlighted logistical barriers and cultural and historical issues that impacted on the effectiveness of mainstream services for Aboriginal people.ConclusionsDespite dedicated disability services in an urban community, geographic proximity does not mitigate lack of awareness and availability of support. This paper has enumerated a number of considerations to address provision of disability services in an urban Australian Aboriginal community including building expertise and specialist capacity within Aboriginal Health Worker positions and services.Increasing awareness of services, facilitating linkages and referrals, eliminating complexities to accessing support, and working with families and Aboriginal community organisations within a framework of resilience and empowerment to ensure a relevant and acceptable model are necessary steps to improving support and care for Aboriginal children with a disability.

Challenges in Implementing Wellness Approaches in Childhood Disability Services: Views from the field

Despite increasing demand for wellness approaches from disability advocates and consumer groups, they are not implemented routinely in childhood disability services. Interviews were conducted with 23 allied health therapists and managers working within four Australian childhood disability services. They described attempts to embed wellness approaches into their policies and practices. The participants were challenged by professional and pragmatic issues arising from moving towards wellness approaches. The professional challenges concerned changing professional identity and working collaboratively with therapists from different disciplines. In addition, they were challenged by pragmatic issues of balancing quality of care with economic imperatives and the speed of change expected to adopt a new model of care. The findings have implications for the quality and delivery of services and support for children with disabilities and their families, for future research, and for the training of allied health professionals.

71 Assessing Psychological Well-Being in Mothers of Children with Disability: Predicting Depressive Symptoms, Parenting Stress, Resiliency, and Family Functioning

Background/aims: In family-centred children's services, it is critical to understand how mothers are responding to the challenges that childhood disability brings to the family. Some mothers will meet these challenges with resiliency and adequate coping; others will need more support and assistance from professionals to care for their child. Currently, there are no brief, psychometrically-sound measures of psychological well-being for use during intake to childhood disability services. The aim of this study was to evaluate two new measures designed to assess the need for psychological support in mothers of children with disability. Methods: Canadian mothers (N = 195) of children with serious health and developmental disabilities completed the Parenting Morale Index (PMI) and Family Impact of Childhood Disability (FICD) scale, and validation measures via computer-assisted telephone-interview. Of these, 154 completed additional validation measures 1 year later. Results: Confirmatory factor analysis supported the factor structure of the PMI and FICD. The PMI and FICD demonstrated strong internal consistency and temporal stability, as well as convergent and discriminant validity. After 1 year, the PMI and FICD jointly predicted maternal depressive symptoms, parenting stress, family resiliency, and family adjustment, with adjusted R2s of.30,.36,.29, and.22, respectively. Conclusion: Together, these brief measures appear to capture unique, but important aspects of maternal psychological well-being, and adaptive coping in the care of their child with disability. Within the Process Model of Stress and Coping, the PMI and FICD can be recommended to complement clinical interviews at intake to childhood disability services.

In search of wellness: allied health professionals' understandings of wellness in childhood disability services

Purpose. Wellness approaches are not routine in childhood disability services, despite theoretical and empirical support and an increasing demand for them from health consumers and disability activists. We aimed to investigate how health professionals define or understand wellness and its practice in the context of childhood disability.Method. A qualitative, interpretive approach was taken. Semi-structured interviews were conducted with 23 health professionals (allied health therapists and managers) providing early intervention and ongoing therapy within four Australian childhood health and disability services. Years of experience providing services to children with disabilities and their families ranged from 6 months to 30 years (M = 9.41, SD = 9.04).Results. The data revealed a noteworthy impediment to incorporating wellness into practice – the difficulties in the allied health professionals reaching consensus in defining wellness. There appeared to be distinct differences between the four services, while there appeared to be no appreciable difference based on the individual professional's years of experience or allied health discipline.Conclusions. The effect of organisational culture should be considered in efforts to embed wellness in childhood health and disability services in order to address client well-being, empowerment, choice, independence and rights to meaningful and productive lives.

Family‐centred service coordination in childhood health and disability services: the search for meaningful service outcome measures

Potential service outcome measures were tested for their utility in the assessment of the quality of 'family centred' service coordination in the provincial network of children's disability services in Manitoba, Canada. This study is based on in-home survey data provided by 103 mothers at 6 and 18 months following assignment of a 'dedicated' service coordinator. Service outcome indicators included measures of parent self-esteem, parenting stress, family functioning and the need for family support resources. Hierarchical regression analyses showed no relationship between level of quality of family-centred service coordination and standardized psychosocial measures of parent and family functioning. However, family centredness of service coordination was found to predict significant reduction in level of family need for psychosocial support resources after 18 months of contact with a service coordinator. Outcome measures that are focused on specific and tangible results of service coordination appear to be of higher utility in service quality assessment than are more global, standardized measures of parent and family functioning.

The Implications of “Working Alliance” for the Measurement and Evaluation of Family-centered Practice in Childhood Disability Services

Family-centered practice in childhood disability services has been found to be positively related to consumer satisfaction. This study explores the relationship between family-centered practice and parental satisfaction with services, while controlling for the quality of the relational dimension or

Service Coordination in Family-Centered Childhood Disability Services: Quality Assessment from the Family Perspective

A research strategy for the evaluation of service coordination in family-centered childhood disability services is proposed. The strategy is consistent with Donabedian's classic framework for applied research in health care. Emphasis is given to process and outcome indicators that offer the parent or caregiver perspective on the quality of the service. The intent is to offer a parsimonious paradigm that will facilitate the operationalization of basic components of family-centered service coordination. Further, it is hoped that the proposed paradigm will serve to advance discussion of important themes in programs of professional training of service coordinators in childhood disability services.

Parental appraisal of the family impact of childhood developmental disability: Times of sadness and times of joy

Background Parental positive and negative appraisals of the family impact of childhood disability are tested as early predictors of parental self‐esteem and overall family adjustment in households with young children with intellectual and developmental disabilities.Method Within 103 Canadian families, 103 mothers and 55 fathers independently completed interviews in their home at two time points: 6 months after their child entered childhood disability services (T1), and one year later (T2).Results Longer‐term family adjustment was found to be predicted by level of parental negative appraisal of the family impact of disability, and by level of self‐esteem, for both mothers and fathers. For mothers, positive appraisal of childhood disability was also found to predict early family adjustment and was related to enhanced self‐esteem.Conclusions Gender differences in parental appraisal of the family impact of childhood disability appear to merge over time. Both positive and negative appraisals appear to coexist and are predictive of mothers' and fathers' perceived overall family adjustment in the longer term.

Predicting family adjustment and parenting stress in childhood disability services using brief assessment tools

Background The utility of two “psychosocial sensor measures” was explored for triage use in childhood disability services to detect households at longer‐term risk for parent and family distress.Method Approximately 6 months after entering childhood disability services, mothers and fathers in 111 Canadian families with a young child with a developmental or cognitive disability identified their family service needs and parenting morale. One year later parents completed standardised measures of parenting stress and family adjustment.Results Two brief measures assessing family counselling needs and parenting morale detected longer‐term family maladjustment from the independent perspectives of mothers and fathers. Although mothers' parenting stress in the longer‐term was detected by the set of measures, fathers' parenting stress was only detected by their parenting morale.Conclusions Brief empirical measures with high face validity may facilitate the process of assessment of service needs, and may help in the early identification of families with higher priority for psychosocial family support resources in childhood disability services.