Factors associated with functioning style and coping strategies of familes with a child with an autism spectrum disorder

A survey of parents/caregivers of a child with an autism spectrum disorder (ASD) was conducted to examine the relationship between ASD characteristics, family functioning and coping strategies. Having a child with ASD places considerable stress on the family. Primary caregivers of a child with ASD from a regional and rural area in Victoria, Australia (N = 53) were surveyed concerning their child with ASD, family functioning (adaptability and cohesion), marital satisfaction, self-esteem and coping strategies. Results suggest that these caregivers had healthy self-esteem, although they reported somewhat lower marital happiness, family cohesion and family adaptability than did norm groups. Coping strategies were not significant predictors of these outcome variables. Results highlight the need for support programmes to target family and relationship variables as well as ASD children and their behaviours, in order to sustain the family unit and improve quality of life for parents and caregivers as well as those children.

Response of the child with autism to preferred prosody during instruction

It has been found that incorporating preferences leads to improvements in target skills for children with autism. No studies have been found, however, that assess the preferences of children for prosody of teacher instruction. Prosody has been defined by fluency of speech, modification of pitch and stress of syllables. This research assessed the preference for, and effectiveness of, prosody of instruction by teachers of children with autism. The preferences of children with autism for monotone, conversational and enthusiastic voice prosodies were assessed. The children's teachers made recording of their own voice reading a story passage in the three selected prosodies. The children with autism were requested to listen to these recordings and select a preferred prosody over thirty three trials. Chi square analyses were conducted to determine the significant preferences from these trials. The selections of prosody of the children with autism were compared with the selections of typical children of the same age. Significant preferences were found for three children with autism and seven typical children. The three children with autism with significant preferences were observed in their classrooms. Teachers were cued with flashcards to use the different prosodies and the children's responses were recorded. An additional twenty instructions were recorded in which the teachers were not given a cue for voice prosody Chi square and Fisher's exact tests indicated that children's preferences did not influence their responses to prosody during classroom instruction. In other words the response in class was not related to prosody preference. Overall children were more likely to not respond to the monotone prosody. The enthusiastic and conversational prosodies were equally effective. Therefore it was concluded that continued and varied use of enthusiastic and conversational prosodies during classroom instruction would be effective for children with autism. It was recommended that future research focus on evaluating the effectiveness of variety of prosody for children with autism.

The impact of caring for a child with cerebral palsy : quality of life for mothers and fathers

Background:  Although it is expected that caring for a child with cerebral palsy (CP) can impact on the quality of life (QOL) of caregivers, the QOL of carers' has yet to be adequately examined. The aims of this study are to: (1) explore the QOL of mothers and fathers of children with CP aged 3–18 years; and (2) examine whether the impact of caring for a child with CP changes from childhood to adolescence.

Method: A qualitative study was conducted utilizing a grounded theory framework. Twenty-four mothers and 13 fathers of children and adolescents with CP aged 3–7 years (n = 15), 8–12 years (n = 10) and 13–18 years (n = 12) and with varying levels of impairment (GMFCS Level I = 1, II = 4, II = 3, IV = 5, V = 12) participated in semi-structured interviews about their QOL. The transcripts were analysed to identify issues affecting parental QOL.

Results: There were no differences in parental QOL among subgroups (i.e. mothers and fathers, age groups, GMFCS levels). Parental QOL ranged across a wide spectrum. Caring for a child with CP affects a parent's physical well-being, social well-being, freedom and independence, family well-being and financial stability. Parents indicated that they often feel unsupported by the services they access.

Conclusions: Caring for a child with CP can both positively and negatively impact on a parent's life. There is value for both parents and children if parental concerns and determinants of QOL are considered in overall programme planning and service delivery for children and their families.

Growth and development in a child with resistance to thyroid hormone and ectopic thyroid gland

Resistance to thyroid hormone is an uncommon problem, which has rarely been associated with thyroid dysgenesis. We report a case with both thyroid gland ectopy and resistance to thyroid hormone and, thus, a reduced capacity to produce and respond to thyroid hormone. The patient presented at 2 years of age with developmental delay, dysmorphic features, and elevation in both thyroxine and thyrotropin. We document her response to therapy with thyroxine, with particular regard to her growth and development. Persistent elevation of thyrotropin is commonly recognized during treatment of congenital hypothyroidism. Resistance to thyroid hormone may be an important additional diagnosis to consider in cases where thyrotropin remains persistently elevated.

The road map to building new dreams : raising a child with developmental delay or disability

Research on early childhood education emphasises the importance of quality in early childhood intervention. This study examines the quality of Early Childhood Intervention Services based on parents’ experiences raising a child with developmental delay or disability. The study builds on the philosophy of Family-Centred Practice and professionals’ experiences with family-centred interventions. A qualitative case study approach was adopted to gain insight about families who are raising a child with additional needs. Nine in-depth parent-interviews and three focus groups with professionals were conducted in the first two terms of 2010. The case explicates the experiences of parents and professionals who were associated with Specialist Children’s Services in a metropolitan region of Victoria. The research concentrated on the first point of entry to early intervention, the referrals process and the waiting list. It also addressed parents' experiences, priorities and expectations. As a small-scale study, it examined parents’ and children’s needs as well as children’s access to therapy in early intervention. It also investigated community support and parent-professional relationships in the context of early childhood intervention services. The study found that family-centred intervention is beneficial to both parents and children with developmental delay or disability. However, to implement an effective family-centred approach, practitioner support in the form of professional development, supervision and peer mentorship is required to develop professionals’ reflexivity and self-efficacy in family-centred interventions. The study also identified strategies to promote effective practice, gaps in universal and specialised services, and implications for policy.

The first year: the support needs of parents caring for a child with an intellectual disability

AIM: To describe the support needs of parents caring for a child with an intellectual disability in the first year of life. BACKGROUND: Parents of children with intellectual disabilities face significant challenges during the first year of their child's life which is an important developmental period not previously addressed in the literature. The provision of support by health professionals, particularly nurses and midwives, during this crucial period can impact on parental well-being and on the health and developmental outcomes of their children. However, parents often feel unsupported. DESIGN: The study used a qualitative descriptive methodology. METHODS: Semi-structured interviews were conducted with parents of eleven children with an intellectual disability in Victoria, Australia, during 2014. Interviews were digitally recorded, transcribed verbatim and analysed using thematic data analysis. FINDINGS: Three key areas of support need were identified to assist parents to provide effective care for their child with an intellectual disability in the first year of life: (1) emotional support as parents adjusted to their role of caring for a child with an intellectual disability; (2) information support as they embarked on a quest for knowledge; and (3) support to facilitate their connection to peer networks. The findings highlighted inconsistent provision of support for parents. CONCLUSION: This study informs health professionals about how to provide holistic, timely support to parents of children with intellectual disabilities in the first year of life. There is an urgent need to review how nurses and midwives can provide relevant support that is responsive to parents' needs.

Working mothers of children with chronic illness: narratives of working and caring

This paper reports the initial findings of an exploratory, qualitative study of the life and work of people who are working full-time and also caring for a child with chronic illness. The demands of such a lifestyle are significant. Respondents - all women - often reported 'doing-it-all' while constantly being frustrated and challenged in their mothering role.

Towards ending the silence: working women as carers of children with chronic illness/disability

This research presents stories from Australian women who work and care for a child with a significant chronic illness or disability. The paper considers the theory of Silencing the Self (Jack, 1991) in relation to the reported experiences and behaviours of these women. We report three themes of Caring and Working: "Otherness", "Doing it All" - but "Wanting to Live a Normal Life". As in Jack's study, these women engaged in silencing of the self. However, we also observed other people contributing to their silence and, unlike the respondents in Jack's study, many of these women fought the silence and did not accept that their unhappy situations should continue. They sought a life where silencing may not have been necessary.

Towards ending the silence: working women caring for children with chronic illness

This paper presents stories from women who work and care for a child with a significant chronic illness or disability. The purpose of this paper is to move towards ending the silence on their lives. A three-phase emergent research design responds to the question: What is life like for a full-time worker who is concurrently the primary carer of a chronically ill child? This paper considers the theory of Silencing the Self (Jack, 1991) in relation to the emergent themes of “Otherness” and “Doing it All.” As in Jack’s study, these women also engaged in silencing of the self. However, unlike the respondents in Jack’s study, these women did not demonstrate feelings of worthlessness and hopelessness for the future, nor were they alone in contributing to their silence. Indeed, many experienced silencing behaviors from others around them, and many rallied against the silence, not accepting that their burden should continue. Consideration of Jack’s theory is made to point out the distinctions between the women in this study and Jack’s study, and analytical commentary is provided to demonstrate the relevance of this analysis in light of the current debates surrounding the Work–Home Conflict and the rising levels of informal care provided by women in our communities.

Working parents of children with chronic illness/disability: narratives of concern

This paper reports some initial findings of an exploratory, qualitative study of the life and work of people who are, concurrently, parents of a child with chronic illness/disability and working full time. The respondents of this study happen to be all women. Two emerging themes of interest are explored here. The first is a revisit of traditional notions of the abusive workplace, which seems to be of special interest when considering the plight of these women. Secondly, the numerous work and home demands on the working mother, especially the working mother of a child with chronic illness or disability. [twas unsurprising that these women reported extensive and multiple physical and emotional demands while trying to manage full time work with significant home and caring responsibilities. What is surprising is that these narratives of concern have not previously been explored, and should be.

Empowerment in early childhood intervention : perspectives of parents of children with disabilities

There have been various changes to the manner in which early intervention services for children with disabilities have been provided in recent decades. One of the most significant paradigm shifts that has accoured pertains to a change in the level of family involvement in early intervention, so that families are now required to be equal partners with professionals in the service provision process. It is now policy in Victoria that early intervention services follow a family-centred model of practice. Services adopting this model aim to empower parents, so that they may have impact on their lives, and the lives of their family members, both during and beyond the years of direct service participation. Much of what is known about empowerment to date is based on theory, author opinion, and research that is largely survey-based. There has been little interview-based research, particulary involving parents of children with disabilities, as well as little Australian research conducted regarding empowerment. To the researcher's knowledge, there has been no interview-based research that specifically asked parents of children with disabilities about their perspectives on empowerment and disempowerment. Parents of children with disabilities are not invited to contribute their opinions in services and research. Empowerment is an individual concept and this research provided parents with an opportunity to express their views on this topic. Parent's perspectives on empowerment are vital for service providers who aim to follow the intervention model required by policy. This research, which was guided by the principles of ecological theory and critical theory, involved to individual semi-structured interviews with 37 Victorian families of children with disabilities. Twenty-one of these families had children currently participating in early intervention services, and 16 families had children of mid-primary school age, who had previously participated in early intervention experiences; the factors that they believe influence empowerment and disempowerment; and helpful and unhelpful experiences with early intervention staff and other people in their lives. Data were analysed primarily inductively, in the context of grounded theory. Responses from the two groups of parents were then compared, as were different emergent themes according to helpfulness and empowerment. The nature of enduring empowerment, one of the key objectives of early childhood intervention, was also considered. From the analysis of data, several themes emerged as influential in the empowerment process for both groups of parents including: information, education and knowledge; meeting and talking with other families of children with disabilities; decision-making and choice; having confidence; participation, involvement and input; meeting or addressing families' practical needs; and having a child with a disability. The results of this research provide valuable information for parents, professionals, agencies, organisations, and the wider community, regarding how families can be supported more effectively and how power can be more equitably balanced.