Supporting siblings of children with a special educational need or disability : an evaluation of Sibs Talk, a one‐to‐one intervention delivered by staff in mainstream schools

A group often overlooked for specific supports in schools are siblings of children with a disability, special educational needs or a serious long‐term condition (SEND). In this article we review the current sibling research and identify a lack of literature on interventions, particularly within a school context. We then present a description of Sibs Talk, an example of a new school‐based intervention to support siblings. Sibs Talk is a ten‐session, one‐to‐one intervention approach for schools to complete with Key Stage 2 children who have a brother or sister with SEND. Finally, we present an initial evaluation of the effectiveness of Sibs Talk, using a pre and post evaluation format with a sample of 55 children from 11 schools. The data presented in this evaluation indicate that Sibs Talk may have contributed to positive outcomes for participating children

Planning ahead with children with life-limiting conditions and their families : development, implementation and evaluation of ‘My Choices’

Background: The United Kingdom has led the world in the development of children’s palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children’s palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. Methods: Drawing on contemporaneous research on producing evidence-based children’s health information, we collaborated with leading children’s not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. Results: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. Conclusion: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning

Siblings of children with life-limiting conditions : psychological adjustment and sibling relationships

Background This study explored psychological adjustment and sibling relationships of siblings of children with life-limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these conditions. Methods Thirty-nine siblings participated, aged 3–16 years. Parents completed measures of siblings' emotional and behavioural difficulties, quality of life, sibling relationships and impact on families and siblings. Sibling and family adjustment and relationships were compared with population norms, where available, and to a matched comparison group of siblings of children with autistic spectrum disorder (ASD), as a comparable ‘high risk’ group. Results LLC siblings presented significantly higher levels of emotional and behavioural difficulties, and lower quality of life than population norms. Their difficulties were at levels comparable to siblings of children with ASD. A wider impact on the family was confirmed. Family socio-economic position, time since diagnosis, employment and accessing hospice care were factors associated with better psychological adjustment. Conclusions Using a systematic classification of LLCs, the study supported earlier findings of increased levels of psychological difficulties in siblings of children with a LLC. The evidence is (i) highlighting the need to provide support to these siblings and their families, and (ii) that intervention approaches could be drawn from the ASD field

Paediatric palliative care : development and pilot study of a ‘Directory’ of life-limiting conditions

Background: Children’s palliative care services are developing. Rational service development requires sound epidemiological data that are difficult to obtain owing to ambiguity in the definitions both of the population who needs palliative care and of palliative care itself. Existing definitions are of trajectory archetypes. The aim of this study was to develop and pilot a directory of the commonest specific diagnoses that map on to those archetypes. Methods: The diagnoses of patients under the care of five children hospices and a tertiary specialist palliative medicine service in the UK were recorded. Duplicates and diagnoses that were not life-limiting conditions according to the ACT/RCPCH criteria or were not primary were removed. The resulting Directory of life-limiting conditions was piloted by analysing Death Certificate data of children in Wales between 2002 and 2007. Results: 1590 diagnoses from children’s hospices and 105 from specialist palliative medicine were combined. After removals there were 376 diagnostic label. All ICD10 chapter headings were represented by at least one condition. The pilot study showed that 569 (54%) deaths in Wales were caused by LLC. Only four LLC resulted in ten or more deaths. Among deaths from LLC, the ten commonest diagnoses accounted for 32%, while the 136 diagnoses that caused one or two deaths accounted for 25%. The majority occurred from a small number of life-limiting conditions. Conclusion: The Directory is a practical tool for identifying most life-limiting conditions using ICD10 codes that facilitates extraction and analysis of data from existing sources in respect of life-limiting conditions in children such as death certificate data, offering the potential for rapid and precise studies in paediatric palliative care

Parental relationship satisfaction in families of children with autism spectrum disorders (ASD) : a multilevel analysis

Couples raising a child with Autism Spectrum Disorder (ASD) face many challenges. Research so far has focused on whether these couples are more or less likely to separate or divorce compared to other couples whose children do not have ASD. While this is important, we argue that the quality of the couple relationship is equally- if not more- important to research. Systematic evidence from typical development has shown that the quality of the couple’s relationship is related to parenting and also to long-term behavioral and emotional outcomes of children. With this study, we wanted to explore whether mothers and fathers of children with ASD are satisfied with their relationship, and what individual or family-level factors are related to the couple’s relationship satisfaction levels. Our data from 146 couples suggested that mothers and fathers agree on how satisfied they are with their relationship, and that relationship satisfaction appears to be related to parents’ depressive symptoms and the behavior problems of their child with ASD. The higher the depression levels, the lower the parent reported on the dependent variable relationship satisfaction, for both mothers and fathers. Also, as behavior problems increased, relationship satisfaction decreased. Interestingly, relationship satisfaction was not related to the behavior problems of a sibling, the number of children in the household, or the socioeconomic position of families (SEP). Families include interconnected systems whereby an individual’s well-being and behavior can have an impact (positive or negative) on other family dyads such as the couple relationship

The construct of maternal positivity in mothers of children with intellectual disability

Despite the elevated levels of stress, anxiety and depression reported by mothers of children with intellectual disabilities (ID), these mothers also experience positive well-being and describe positive perceptions of their child. To date, maternal positivity has been operationalised in different ways by using a variety of measures. In the present study, we tested whether a latent construct of maternal positivity could be derived from different measures of positivity. Method One hundred and thirty-five mothers of 89 boys and 46 girls with ID between 3 and 18 years of age completed measures on parental self-efficacy, their satisfaction with life, family satisfaction, their positive affect and their positive perceptions of their child with ID. We conducted a confirmatory factor analysis of latent positivity and subsequently tested its association with child social skills and behaviour problems, and maternal mental health. Results A latent maternal positivity factor achieved a statistically good fit by using the five observed indicators of positivity. Parental self-efficacy had the strongest loading on the latent factor. Maternal positivity was significantly negatively associated with maternal psychological distress, maternal stress and child problem behaviours and positively associated with child positive social behaviour. Conclusions These findings lend support to the importance of examining parental positivity in families raising a child with ID, and using multiple indicators of positivity. Associations with negative psychological outcomes suggest that interventions focused on increasing parental positivity may have beneficial effects for parents. Further research is needed, especially in relation to such interventions

Maternal stress and the functions of positivity in mothers of children with intellectual disability

Although mothers raising children with Intellectual Disability (ID) report poorer mental health than parents raising typically developing children, they also report feelings of positivity; both generally and specific to their child. To date little is known about the function of maternal positivity thus, we explored the putative compensatory and protective functions of maternal positivity, within both a cross-sectional and one-year longitudinal framework that examined the relationship between children’s behaviour and mental health problems with maternal mental health problems. Participants included 135 mothers of children with severe ID who were between 3 and 18 years of age. Multiple linear regression models investigated the potential function of maternal positivity. At a cross-sectional level, maternal positivity was found to be a significant independent predictor of maternal stress and moderated the impact of child behaviour problems on maternal parenting stress. Longitudinally, maternal positivity did not have a direct effect on later parenting stress nor function as a moderator. Findings from our cross-sectional analysis are consistent with the view that positivity serves a compensatory function. Further exploration is needed to understand the longitudinal function of maternal positivity

Cross-lagged associations between inter-parental relationship satisfaction and sibling relationship quality in families of children with intellectual disabilities

BACKGROUND: A family systems perspective hypothesises that the well-being of all family members is interconnected. However, limited research has examined the association between inter-parental conflict and sibling relationship quality in the context of intellectual disabilities. The aim of this study was to build on existing literature using longitudinal data, exploring potential (bi)directional associations between sibling relationship quality and inter-parental relationship satisfaction in families of children with intellectual disabilities. METHODS AND PROCEDURES: Primary caregivers (n = 223) of children with intellectual disabilities (M age at Wave 1 = 8.36 years, SD = 2.33) with at least one sibling (M age at Wave 1 = 8.45 years, SD = 2.47) completed the same online survey, 2 years 9 months apart. The survey measured inter-parental relationship quality and sibling relationship quality. A cross-lagged panel design was used to determine the directional associations between both subsystems. OUTCOMES AND RESULTS: The final autoregressive and cross-lagged models had good model fit. However, we found no evidence of any directional associations between sibling relationship quality and inter-parental relationship satisfaction. CONCLUSIONS AND IMPLICATIONS: The results from the current study contrast with previous literature, exhibiting the need for further research exploring factors associated with subsystem relationships in families of children with intellectual disabilities

Early Years Parenting Mediates Early Adversity Effects on Problem Behaviors in Intellectual Disability

A family developmental framework was applied to data from families of children with intellectual disabilities to understand the role of parenting in the path from early adversity to problem behaviors in mid-childhood. Data from 9 months to 11 years tested the Family Stress Model in families of 555 children. Adversarial parenting between 3 and 5 years mediated the path from early adversity (family poverty and maternal psychological distress at nine months) to problem behaviors at 7 and 11 years. Positive parent-child relationship only mediated the path to conduct problems. Multiple mediation was not present. Early adversity impacts both positive parent-child relationship and adversarial parenting between three and five, but the latter is crucial for problem behaviors in mid-childhood