A Qualitative Study of Contextual Factors’ Impact on the Adaptation of a Caregiver-mediated Early Autism Intervention in South Africa

Background: Autism Spectrum Disorder (ASD) is a major global health challenge as the majority of individuals with ASD live in low- and middle-income countries (LMICs) and receive little to no services or support from health or social care systems. Despite this global crisis, the development and validation of ASD interventions has almost exclusively occurred in high-income countries, leaving many unanswered questions regarding what contextual factors would need to be considered to ensure the effectiveness of interventions in LMICs. This study sought to conduct explorative research on the contextual adaptation of a caregiver-mediated early ASD intervention for use in a low-resource setting in South Africa.

Methods: Participants included 22 caregivers of children with autism, including mothers (n=16), fathers (n=4), and grandmothers (n=2). Four focus groups discussions were conducted in Cape Town, South Africa with caregivers and lasted between 1.5-3.5 hours in length. Data was recorded, translated, and transcribed by research personnel. Data was then coded for emerging themes and analyzed using the NVivo qualitative data analysis software package.

Results: Nine contextual factors were reported to be important for the adaptation process including culture, language, location of treatment, cost of treatment, type of service provider, familial needs, length of treatment, support, and parenting practices. One contextual factor, evidence-based treatment, was reported to be both important and not important for adaptation by caregivers. The contextual factor of stigma was identified as an emerging theme and a specifically relevant challenge when developing an ASD intervention for use in a South African context.

Conclusions: Eleven contextual factors were discussed in detail by caregivers and examples were given regarding the challenges, sources, and preferences related to the contextual adaptation of a parent-mediated early ASD intervention in South Africa. Caregivers reported a preference for an affordable, in-home, individualized early ASD intervention, where they have an active voice in shaping treatment goals. Distrust of community-based nurses and health workers to deliver an early ASD intervention and challenges associated with ASD-based stigma were two unanticipated findings from this data set. Implications for practice and further research are discussed.

The Effects of a Group-Based Approach to Parent-Mediated Early Behavioral Intervention for Very Young Children with or At-Risk for Autism

Thesis (Ph.D.)--University of Washington, 2016-08

Child eating behaviour outcomes of an early feeding intervention to reduce risk indicators for child obesity : the NOURISH RCT

Objective Describe parent-reported child eating behaviour and maternal parenting impact outcomes of an infant feeding intervention to reduce child obesity risk. Design and Methods An assessor masked Randomised Controlled Trial (RCT) with concealed allocation of individual mother-infant dyads. The NOURISH RCT enrolled 698 first-time mothers (mean age 30.1 years, SD=5.3) with healthy term infants (51% female) aged 4.3 months (SD=1.0) at baseline. Outcomes were assessed six months post-intervention when the children were 2-years old. Mothers reported on child eating behaviours using the Child Eating Behaviour Questionnaire (CEBQ), food preferences and dietary intake using a 24-hour telephone recall. Parenting was assessed using five scales validated for use in Australia. Results Intervention effects were evident on the CEBQ overall (MANOVA P=.002) and 4/8 subscales: child satiety responsiveness (P=.03), fussiness (P=.01), emotional overeating (P<.01), and food responsiveness (P=.06). Intervention children ‘liked’ more fruits (P<.01) and fewer non-core foods and beverages (Ps=.06, .03). The intervention mothers reported greater ‘autonomy encouragement’ (P=.002) Conclusions Anticipatory guidance on protective feeding practices appears to have modest positive impacts on child eating behaviours that are postulated to reduce future obesity risk.

Starting with strengths : an Indigenous early years intervention

Aboriginal protocol usually links the right to tell a story with a declaration of involvement or connection to the story. I am Aboriginal . . . I am a woman, daughter, sister, aunty and wife. I am also a mother to three beautiful children aged 6, 4 and 2 years. To my children at this point in their lives, I am their provider, nurturer, teacher, cook, taxi driver, mediator, stylist, Elder, slave, and expert on all there is to know in the world. Being the centre of the universe to three impressionable young minds is a role that I cherish deeply, and I take the responsibilities of it very seriously. I love the job of parenting. As any parent would agree, it is the most challenging and difficult job of all, but the opportunity to bring a life into the world and shape and mould a little person into a big person brings rewards that no career can.

Child dietary and eating behaviour outcomes up to 3.5 years after an early feeding intervention: the NOURISH RCT

- Objective To evaluate dietary intake impact outcomes up to 3.5 years after the NOURISH early feeding intervention (concealed allocation, assessor masked RCT). - Methods 698 first-time mothers with healthy term infants were allocated to receive anticipatory guidance on protective feeding practices or usual care. Outcomes were assessed at 2, 3.7 and 5 years (3.5 years post-intervention). Dietary intake was assessed by 24-hour recall and Child Dietary Questionnaire. Mothers completed a food preference questionnaire and Children’s Eating Behaviour Questionnaire. Linear mixed models assessed group, time and time x group effects. - Results There were no group or time x group effects for fruit, vegetables, discretionary food and non-milk sweetened beverages intake. Intervention children showed a higher preference for fruits (74.6% vs 69.0% liked, P<.001), higher Child Dietary Questionnaire score for fruit and vegetables (15.3 vs 14.5, target>18, P=0.03), lower food responsiveness (2.3 vs 2.4, of maximum 5, P=.04) and higher satiety responsiveness (3.1 vs 3.0, of maximum 5, P=.04). - Conclusions Compared to usual care, an early feeding intervention providing anticipatory guidance regarding positive feeding practices led to small improvements in child dietary score, food preferences and eating behaviours up to 5 years of age, but not in dietary intake measured by 24-hour recall.

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.

Three year follow-up of an early childhood intervention : is movement skill sustained?

Background
Movement skill competence (e.g. the ability to throw, run and kick) is a potentially important physical activity determinant. However, little is known about the long-term impact of interventions to improve movement skills in early childhood. This study aimed to determine whether intervention preschool children were still more skill proficient than controls three years after a 10 month movement skill focused intervention: ‘Tooty Fruity Vegie in Preschools’.

Methods
Children from 18 intervention and 13 control preschools in NSW, Australia were assessed at ages four (Time1), five (T2) and eight years (T3) for locomotor (run, gallop, hop, leap, horizontal jump, slide) and object control proficiency (strike, bounce, catch, kick, overhand throw, underhand roll) using the Test of Gross Motor Development-2. Multi-level object control and locomotor regression models were fitted with variables time, intervention (yes/no) and a time*intervention interaction. Both models added sex of child and retained if significant, in which case interactions of sex of child with other variables were modelled and retained. SPSS (Version 17.0) was used.

Results
Overall follow-up rate was 29% (163/560). Of the 137 students used in the regression models, 53% were female (n = 73). Intervention girls maintained their object control skill advantage in comparison to controls at T3 (p = .002), but intervention boys did not (p = .591). At T3, there were no longer intervention/control differences in locomotor skill (p = .801).

Conclusion
Early childhood settings should implement movement skill interventions and more intensively target girls and object control skills.

Above and beyond: exploring outcomes and practices of Scope Southern Region Early Childhood Intervention Service for children with disability

This research project is an exploration of the early childhood intervention service (ECIS) provided by Scope Southern Region. The research seeks to examine the benefits and outcomes for families and children. In doing so, the project’s emphasis is on key practices such as family centred practice and transdisciplinary practice, while examining the enablers and barriers to providing positive benefits to families and children. The central question is whether the interventions are of assistance to families and children.

Three year follow-up of an early childhood intervention: what about physical activity and weight status?

Fundamental movement skills are a correlate of physical activity and weight status. Children who participated in a preschool intervention had greater movement skill proficiency and improved anthropometric measures (waist circumference and BMI z scores) post intervention. Three years later, intervention girls had retained their object control skill advantage. The study purpose was to assess whether at three year follow up a) intervention children were more physically active than controls and b) the intervention effect on anthropometrics was still present.

Attitudes of the autism community to early autism research

Investigation into the earliest signs of autism in infants has become a significant sub-field of autism research. This work invokes specific ethical concerns such as use of 'at-risk' language, communicating study findings to parents and the future perspective of enrolled infants when they reach adulthood. This study aimed to ground this research field in an understanding of the perspectives of members of the autism community. Following focus groups to identify topics, an online survey was distributed to autistic adults, parents of children with autism and practitioners in health and education settings across 11 European countries. Survey respondents (n = 2317) were positively disposed towards early autism research, and there was significant overlap in their priorities for the field and preferred language to describe infant research participants. However, there were also differences including overall less favourable endorsement of early autism research by autistic adults relative to other groups and a dislike of the phrase 'at-risk' to describe infant participants, in all groups except healthcare practitioners. The findings overall indicate that the autism community in Europe is supportive of early autism research. Researchers should endeavour to maintain this by continuing to take community perspectives into account.