Susana Gavidia-Payne

The impact of child, family, and professional support characteristics on the quality of life in families of young children with disabilities

Abstract Background Families of young children with disabilities are faced with ongoing challenges that impact various aspects of family life. Given the increasing emphasis on promoting positive outcomes in these families, the overall aim of the current study was to examine the contribution of child, family, and support characteristics to the quality of life in families of young children with disabilities. Method The sample was recruited from several early childhood intervention programs within metropolitan Melbourne, Australia, and consisted of 64 families of children aged between 3 and 5 years with a developmental delay or disability. Results As a whole, parental perceptions and experiences of family-centred professional support was one of the strongest predictors of family quality of life. The perceived intensity of child behavioural problems as well as support from extended family members also accounted for a significant proportion of unique variance in predicting quality of family life. Conclusion The current findings provide further evidence for the importance of a family-focused approach to intervention that acknowledges and provides support that is tailored to the unique needs of each individual family. The practical implications of these results as well as directions for future research are discussed.

Stress, behaviour, and sleep problems in children with an intellectual disability

Sleep problems are common in children with an intellectual disability, and occur more frequently than in typically developing children. Problems usually include settling difficulties, long sleep latencies, night waking, and early morning waking. Sleep problems are also likely to be stressful for other family members, particularly parents. This paper reports a study of children’s sleep problems, and their relationship with parent stress and coping, and child behaviour problems. Fifty-two children (age 2-19 years) with an intellectual disability (ID) and their families, and a comparison group of 25 typically developing children (age 2-17 years) and their families, participated in the study. Parents completed a sleep questionnaire, the Developmental Behaviour Checklist (DBC), the Parenting Hassles Scale (PHS). Analysis showed that the presence of sleep problems was significantly associated with both the intensity and frequency of hassles, and the presence of behaviour problems. Implications for children with an ID and their families, and for intervention are discussed.

Marital adjustment in families of young children with disabilities: Associations with daily hassles and problem-focused coping

A family systems framework was used to examine associations between stressors/hassles, problem-focused coping, and marital adjustment in 67 families of young children with disabilities. Most of the couples were experiencing average to above average marital adjustment. When daily stressors/hassles were higher, husbands and wives viewed their marriages more negatively. After variance contributed by stressors/hassles was statistically controlled, fathers who employed more problem-focused coping strategies were more positive about their marriages. For wives (but not husbands), a cross-spousal partner effect was found; women reported higher marital adjustment when their husbands employed more problem-focused coping strategies. We reaffirmed the systemic nature of family processes and highlighted the role of parent gender in understanding the relationships among stressors, coping, and marital well-being.

Staff characteristics and attitudes towards the sexuality of people with intellectual disability

Abstract Background The identification of individual staff characteristics that have a relationship with specific attitudes of staff caring for people with intellectual disability (ID) may enable targeted training and better support. Method Sixty-six participants from services for people with ID in metropolitan Melbourne, Australia, completed a survey, including the Attitudes to Sexuality Questionnaire (Individuals with an Intellectual Disability; Cuskelly & Gilmore, 2007). Results Staff attitudes towards the sexuality of people with ID were quite positive. Age, program agency position, and training uptake were all associated with positive staff attitudes. Conclusion Targeted training programs in sexuality can benefit direct care workers in general, and older staff more specifically. Emphasis is warranted in the area of training for managing male sexual behaviours.

New insights into family functioning and quality of life after pediatric liver transplantation.

Denny B, Beyerle K, Kienhuis M, Cora A, Gavidia‐Payne S, Hardikar W. New insights into family functioning and quality of life after pediatric liver transplantation.

Evaluation of a family-based intervention for siblings of children with a disability or chronic illness

Abstract This paper describes the outcomes of a 6-week family-based psycho-educational intervention for siblings of children with a disability or chronic illness. A randomised controlled trial method was used with 21 siblings (aged 8-16 years) and their parents. Results revealed a decrease in siblings’ emotional symptoms, perceived intensity of daily stress, and use of avoidant coping; a strengthening of family time and routines; and high parental satisfaction with the program. Given the limited number of well-controlled sibling intervention studies, this research is an important step towards developing empirically supported sibling interventions, and is of significance to professionals working with families of children with a disability or chronic illness.

The emotional and behavioural functioning of siblings of children with special health care needs across childhood

This study examined the emotional and behavioural functioning of siblings of children with special health care needs identified in the Longitudinal Study of Australian Children (LSAC). Of the 106 siblings identified, 15-52% had emotional and behavioural difficulties in the at-risk or clinical range on the parent-reported Strengths and Difficulties Questionnaire (SDQ) subscales when aged 4-5 (wave 1), 6-7 (wave 2), 8-9 (wave 3) and 10-11 years (wave 4). After controlling for differences in socio-economic position, siblings had significantly higher difficulties on all subscales than their peers without a brother or sister with a special health care need at most time points. Latent growth modelling revealed little change in emotional and behavioural symptoms for siblings across childhood, while behavioural symptoms decreased for their peers. These findings suggest that some siblings are at heightened risk of emotional and behavioural difficulties across childhood, underscoring the importance of assessing and promoting the wellbeing of all family members when providing services to children with special health care needs.

Strengthening Australian Families: Socioeconomic Status, Social Connectedness, and Family Functioning

Abstract Social connectedness has been promoted as one factor that may facilitate optimal functioning for families experiencing economic adversity. Using data from 218 Australian families, the current study explored the relative importance of social connectedness to the functioning of economically diverse families. Overall, results indicated similar levels of social connectedness and family functioning across low- and high-income groups. However, important differences were identified with regards to the relative contribution of social connectedness to the functioning of families across the economic spectrum. Clinical implications arising from these findings include the potential benefit of exploring social connectedness as a routine part of clinical assessment and ongoing intervention for families experiencing economic vulnerability.

Preliminary Evaluation of the Implementation of a Routines-Based Early Childhood Intervention Model in Australia: Practitioners' Perspectives.

The aim of the current pilot study was to evaluate the implementation of a routines-based early childhood intervention (RBECI) model by Australian Early Childhood Intervention (ECI) professionals. The RBECI model consisted of four key components: (a) Routines-Based Interviews (RBIs), (b) participation-based goals, (c) home visits, and (d) community consultations. Five ECI professionals and nine families were recruited from an Australian ECI service. Professionals’ ability to implement the model was assessed immediately before and 6 months after receiving training in the model. Individual in-depth interviews elicited professionals’ perspectives on implementing the model. Results revealed that professionals’ knowledge, understanding, confidence, and home visiting skills increased from pre- to post-intervention, but community consultation skills did not. There were limitations in the quality of RBIs and participation-based goals produced. Overall, professionals were positive about the implementation of the model. The findings provide support for the adoption of the RBECI model in ECI more broadly.

Eliciting family concerns and priorities through the Routines-based Interview

ABSTRACT Background: Research has demonstrated that having an understanding of families’ everyday routines is important when planning interventions, yet the nature of the information revealed by families about their daily lives has been scarcely documented. The aim of this study was to examine the concerns and priorities of families with a child with a developmental disability elicited through the Routines-based Interview (RBI). Method: RBIs were conducted by early childhood intervention (ECI) professionals with 16 families with a child aged between 4 months and 5 years. Interviews were audiotaped and transcribed verbatim and analysed using thematic analysis. Results: Findings revealed that families were concerned about their child’s development and behaviour; made accommodations to everyday routines for their child; and reported priorities for the intervention. Conclusion: Tools, such as the RBI, are important to generate information that can assist ECI professionals to design interventions that are family-centred, contextualised, and embedded in everyday family life.