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This chapter reviews qualitative research on parenting children with disabilities published over the last 50 years to explore whether shifts in academic discourse and changes in professional training have affected research on parenting and/or the experiences of parents who are the subject of such research.

An extensive literature search was conducted, and 78 peer-reviewed, qualitative studies on the experience of parenting a child with a disability were included in the sample. Themes were extracted from the reviewed literature and compared across decades.

The findings of the present review suggest that some aspects of the parenting experience have changed very little. In particular, parents continue to experience negative reactions such as stress and anomie, especially early in their children’s lives, and socially imposed barriers such as unhelpful professionals, and a lack of needed services continue to create problems and inspire an entrepreneurial response. In addition, stigmatizing encounters with others continue to be a common occurrence. In contrast to earlier decades, studies conducted in more recent years have begun to use the social model of disability as an analytic frame and also increasingly report that parents are questioning and challenging the concept of “normal” itself.

Additional improvements are needed in professional education and services to reduce the negative reactions experienced by parents of children with disabilities.

The findings of this meta-analysis can serve as a guide to future research on parenting children with disabilities.

This chapter addresses the question of how we might best characterize the morale of mothers of children with disabilities. Views of this question have undergone substantial evolution over the past quarter century (Turnbull & Turnbull, 2002). Early writers on the topic emphasized negative impacts on the family. Farber (1959) characterized the birth of a mentally retarded child as a tragic crisis that over time impeded the family from developing normally. Olshansky (1962) described the typical reaction of parents to a child with mental retardation as long-term demoralization, which he termed “chronic sorrow.” These assertions were then followed by empirical studies suggesting high levels of depression in mothers of children with disabilities (Cummings et al., 1966; Gath, 1977). Gath (1977), for example, compared two groups of parents with and without children with disabilities on a researcher developed measure of psychological distress and found significantly higher levels in parents of children with disabilities. She titled her report, “The impact of an abnormal child upon the parents,” seeming to imply that emotional distress, perhaps even mental illness, was the most characteristic impact. This literature also appeared to imply that the cause of parental distress was univariate, that is, the child’s disability uniquely caused it. Early studies of parental distress selected child variables as the sole predictors of emotional distress (e.g. Beckman, 1983). Turnbull and Turnbull (2002) reviewed this literature and described this historical phase as pathogenic.

Research was conducted on parents’ experience of caring for a child living with Duchenne muscular dystrophy (DMD). The focus of this research was on the key psychological aspects of the process of adjustment to the illness of their child (family and spousal relationship, daily life, emotions, career, spirituality, and coping strategies). There was evidence throughout the study of gender‐specific differences in constructing the different aspects of the shared experience. The main findings included major differences in the initial reaction and coping styles between mothers and fathers. These differences could be perceived as a threat or could serve as a source of isolation between parents. Additional findings included the unequal sharing of caregiving tasks between partners: the primary caregiving role usually being assumed by the mother, with the father playing a supportive role. The unique contribution of this study in further describing the lived experience of parents of a child with DMD is its attention to the internal dynamic of the relationship between mothers and fathers. This dynamic is highly dependent on the respective roles of primary and secondary caregiver. This research has implications for the design and implementation of intervention strategies aimed at couples caring for a child with DMD, or with other severe, chronic, and uniformly fatal illnesses.

Children with acquired brain injury (ABI) are at significant risk of serious behavioural and social difficulties. The burgeoning growth of research documenting behavioural sequelae after paediatric ABI has not been met with a concomitant level of research aimed at treating the problem. The purpose of this paper is to investigate whether a manualised behavioural intervention support programme could reduce challenging behaviours in children with ABI and improve family-parental well-being and functioning.

A total of 61 parents (48 mothers and 13 fathers) of 48 children aged between three and 12 years with mild, moderate, or severe ABI received an ABI adapted “Signposts for Building Better Behaviour” programme (Hudson et al., 2001) in group-support (GS) or telephone-support (TS) format. Trained “Signposts” practitioners delivered the programme over a five-month period. The programme consisted of nine information booklets, a DVD, and workbook. All families completed pre-intervention and post-intervention evaluations.

On an average parents completed 7.92 out of a possible nine intervention sessions (range 7-9). Parents in both TS and GS formats reported significant reductions in challenging child behaviours irrespective of injury severity. They also reported significant reductions in dysfunctional parenting practices, stress and family burden.

Overall, the current research provides support for Signposts to be used with families of children with ABI in an attempt to ameliorate negative outcomes for family, parent, and child.

The purpose of this paper is to determine the preliminary clinical utility of a telephone-support format of the “Signposts” (Hudson et al., 2003) behavioural intervention programme to be used with a paediatric traumatic brain injury (TBI) population.

Nine families caring for a child with moderate or severe TBI, participated in a pilot study of a TBI adapted “Signposts for Building Better Behaviour” manualised programme. The programme is designed to help parents learn positive parenting skills and strategies that empower them to successfully manage their child's challenging behaviour post-TBI. The programme consists of seven core sessions and two supplemental sessions. Parents work through the sessions with an accompaniment of guiding information booklets, a DVD with scenes modelling positive parenting strategies, and a workbook containing written exercises. At the completion of each session parents receive a telephone-support call from a trained Signposts practitioner who provides assistance and feedback on programme content.

On average parents completed eight sessions (range seven to nine) and every family completed the seven core sessions. Participation in the telephone-support calls was high with 96 per cent of calls having been successfully received by families. All parents agreed that the telephone calls were a useful part of the programme and felt that the materials were helpful for managing challenging behaviour. Paired-samples t-tests showed significant reductions for challenging behaviour from pre- to post-intervention. Parenting practices also significantly improved over the course of the intervention. In general, parents rated a high level of consumer satisfaction with the Signposts programme and its content.

Overall, these preliminary findings support the potential clinical utility of a telephone-support version of the Signposts programme to improve parenting skills and to reduce challenging child behaviour following TBI. This study has provided the impetus for a larger clinical research trial to be conducted.

As an Interpretative Phenomenological Analysis (IPA), the purpose of this paper is to provide an in-depth understanding of adolescent experiences of maternal cancer to identify the individual and contextual factors that shape adolescent experiences and evaluates the potential applicability of the Family Ecology Model to the illness context.

This analysis is focussed on three female adolescents who completed semi-structured interviews, which were subjected to IPA. Maternal illness is a challenge for adolescents, which can be improved or undermined by their contexts. The analysis yielded three sub-themes: family structure, social supports, experiencing maternal cancer at a time of transition and the lasting impact of cancer.

This study found that adolescent experiences of maternal cancer depend on their contexts from an ecological perspective the type and quality of adolescent interactions determine coping and adjustment. Maternal cancer can be difficult as adolescents are already facing specific developmental challenges. Future research can benefit from adopting an ecological perspective to further understand adolescent experiences to support adolescent that may be more vulnerable and benefit from additional supports. This is not a generalisable piece of research but it provides a very deep and detailed understanding of the impact of maternal cancer on adolescents’ developmental course and determines how the complexity of their contexts can serve as a risk or a protective factor at this challenging time.

This paper contributes to the body of research by providing a comprehensive understanding of adolescents facing maternal cancer. The Ecological Model supports the findings of this research and proves to be a good model to understand the complex interplay between adolescents and their environments when facing a difficult challenge like maternal cancer is.

Digitally delivered, parent-focused interventions (DD-PFIs) are viewed as an important method for supporting child well-being. Few DD-PFIs include health-promotion and general-parenting content, and only some are intended for a universal audience. The purpose of this paper is to focus on a preliminary evaluation of Grow Online, which was designed to address this gap.

A mixed-methods design, including pretests and posttests and semi-structured interviews, was employed to evaluate program feasibility and demonstrate proof of concept.

Feasibility findings were favorable, which indicates participants were satisfied with the program, liked the main program features, found the content helpful and had a positive experience using the website. Initial recruitment was strong, and engagement with the sessions was high; however, retention was poor with a 73.5 percent attrition rate. Significant pre- to post-changes were found on measures of over-reactive discipline, parenting efficacy, emotion coaching, coping socialization, child physical activity support, rewarding eating and child externalizing and internalizing behaviors.

Study design and high attrition limit the ability to infer causality and generalize beyond the sample.

Providing support to parents through a universal health-promoting DD-PFI is viable, though issues involving retention need to be given full consideration.

Parents use of technology to access child care information is increasing, but most information online is not evidence-informed. Grow Online fills an important gap in the research and practice of DD-PFIs, and this study’s findings suggest a more rigorous evaluation is merited.

The purpose of this paper is to review and summarise a small but growing body of literature demonstrating that by embedding intervention within a family context offers the greatest promise of success in working with families caring for a child with traumatic brain injury (TBI).

The approach takes the form of a literature review.

The current family-centred evidence-based research indicates the potential benefits for the delivery of family focused interventions following childhood TBI.

The paper adds to the paediatric TBI literature as being of the few papers to incorporate a number of novel family-centred behavioural interventions into the one review paper.

Parent-focused interventions (PFIs) are a promising method for supporting parents and promoting children’s well-being. Few PFIs in the USA, however, include physical health promotion content and are universal programs. The purpose of this paper is to describe a universal health-promoting PFI for parents of elementary school-aged children and demonstrate proof of concept.

The program emphasizes positive parenting practices, stress management skills and physical health promotion strategies and recommendations, and is part of a larger initiative that includes a continuum of universal, developmentally appropriate, health-promoting PFIs for civilian and military parents. The program was implemented at two community sites in rural Pennsylvania with 20 civilian parents completing pretests and posttests. Study measures assessed parenting, stress and stress management and physical health promotion related outcomes.

Parents reported decreases in suboptimal discipline and feeding practices, stress and child internalizing behavior. They also reported increases in their sense of control in managing child behavior, coping socialization, child’s outdoor playtime and health recommendations met.

While these preliminary findings may not be generalizable, they serve as proof of concept, which suggests that more rigorous research on the program is warranted.

Implementing a universal, health-promoting PFI within the USA is viable and has the potential to impact multiple short-term outcomes.

Parents are among their child’s earliest and most influential educators, and this study lends further support to their role as health educators. Given the significant public health benefits of holistically promoting child health, the time has come for universal PFIs to begin including physical health promotion content.

Students with Autism Spectrum Disorders (ASD) are one of the least included in the general education environment, only falling behind children with intellectual disabilities, multiple disabilities, and deaf/blindness (U.S. Department of Education, 2015). Teacher attitudes, knowledge and training of ASD, and administrative support are essential components of successful inclusive environments (Ferraioli & Harris, 2011; Harding, 2009). Researchers have also identified evidence-based practices to support students with ASD (National Autism Center, 2015; Wong et al., 2014). This chapter provides research related to inclusion of students with ASD, factors that may influence inclusion rates, and provides educators a few practices to try if they are given the opportunity to work with a student with ASD in their inclusive classroom.