Malin Broberg

Parents of children with and without intellectual disability: couple relationship and individual well-being

BACKGROUND Research on parents of children with intellectual disability (ID) has identified a range of risk and protective factors for parental well-being. In family research, the association between marital quality and depression is a vital field of investigation. Still little research has addressed how aspects of the couple relationship affect the adaptation of parents of children with ID. The present study examined predictive links between couple relationship factors (marital quality and coparenting quality) and individual well-being. METHODS Data were obtained through self-report questionnaires completed by parents of children with ID (mothers, n = 58; and fathers, n = 46) and control children (mothers, n = 178; and fathers, n = 141). To test the hypothesis that couple relationship factors predicted individual well-being, multiple regression analyses were performed controlling for the following risk factors identified by previous research: child self-injury/stereotypic behaviour, parenting stress, and economic risk. RESULTS Marital quality predicted concurrent well-being, and coparenting quality predicted prospective well-being. Mothers of children with ID reported lower well-being than other parents. CONCLUSIONS There is a continued need for investigation of the details of the links between couple relationship and individual well-being in parents of children with ID. Couple relationship factors should be given consideration in clinical interventions.

Measuring Responsive Style in Parents who use AAC with their Children: Development and Evaluation of a new Instrument

The aim of this study was to develop and evaluate an instrument – the Responsive Augmentative and Alternative Communication Style (RAACS) scale Version 2 – to assess the communicative style of parents as they interact with their children using augmentative and alternative communication (AAC). This scale was used to analyze play interactions between 43 parents and 28 children with different diagnoses (including Down syndrome, autism, cerebral palsy, and intellectual disability), aged between 12 and 60 months. Parent–child interactions were observed both before and after parent participation in ComAlong, a training course on using responsive communication and AAC to support interaction with children. Based on an analysis of the results, Version 3 of the RAACS scale was developed and is recommended for future use. Analyses of Version 3 showed acceptable inter- and intra-coder reliability, and excellent internal consistency.

Child's positive and negative impacts on parents--a person-oriented approach to understanding temperament in preschool children with intellectual disabilities.

BACKGROUND Despite previous efforts to understand temperament in children with intellectual disability (ID), and how child temperament may affect parents, the approach has so far been unidimensional. Child temperament has been considered in relation to diagnosis, with the inherent risk of overlooking individual variation of childrens temperament profiles within diagnostic groups. The aim of the present study was to identify temperamental profiles of children with ID, and investigate how these may affect parents in terms of positive and negative impacts. METHOD Parent-rated temperament in children with ID was explored through a person-oriented approach (cluster analysis). Children with ID (N=49) and typically developing (TD) children (N=82) aged between 4 and 6 years were clustered separately. RESULTS Variation in temperament profiles was more prominent among children with ID than in TD children. Out of the three clusters found in the ID group, the disruptive, and passive/withdrawn clusters were distinctly different from clusters found in the TD group in terms of temperament, while the cluster active and outgoing was similar in shape and level of temperament ratings of TD children. Children within the disruptive cluster were described to have more negative and less positive impacts on mothers compared to children within the other clusters in the ID group. CONCLUSIONS Mothers who describe their children as having disruptive temperament may be at particular risk for experiencing higher parenting stress as they report that the child has higher negative and lower positive impacts than other parents describe. The absence of a relationship between child temperament profile and positive or negative impact on fathers may indicate that fathers are less affected by child temperament. However, this relationship needs to be further explored.

A comparison between written and spoken narratives in aphasia

The aim of the present study was to explore how a personal narrative told by a group of eight persons with aphasia differed between written and spoken language, and to compare this with findings from 10 participants in a reference group. The stories were analysed through holistic assessments made by 60 participants without experience of aphasia and through measurement of lexical and syntactic variables. The findings showed that the participants with aphasia generally received lower ratings than the reference group, but also that stories written by participants with aphasia were rated as easier to understand, more interesting, and more coherent than the groups spoken stories. Regression analysis showed that syntax could predict several of the rated variables for the stories told by the participants with aphasia. Results point to the need to include writing training in language rehabilitation in order to increase the ability for persons with aphasia to participate in communicative situations in everyday life.

Expectations of and reactions to disability and normality experienced by parents of children with intellectual disability in Sweden

BACKGROUND Much research has been devoted to the emotional burdens of having a child with intellectual disability (ID), but very little of this has focused on the burdens imposed by negative public attitudes towards disability. Adjustment has primarily been thought of as adjustment to the actual disability rather than adjustment to attitudes or prejudices towards disability. AIM The aim of the present study was to study expectations of and reactions to disability and normality experienced by parents of children with ID in their everyday life in Sweden. RESEARCH QUESTIONS Do the parents relate to the tragedy discourse and, if so, how? Do parents relate to other expectations and disability discourses and, if so, how? What subject positions do the discourses offer? METHOD The analysis was based on 17 semi-structured interviews with nine fathers and eight mothers of nine children with different IDs. The children were newly diagnosed and were from 6 months to 5 years of age. RESULTS Four discourses (tragedy and the lived experience, tragedy and the outsider perspective, the clinical gaze and the super-parent ideal) and subject positions relating to these discourses are discussed. DISCUSSION The results of this study show that parents of young children with disabilities relate to a wide range of social processes and practices, which could be thought to affect their emotional well-being and parental identity negatively.

Editorial for JIDR special issue on Resilience and People with Intellectual Disabilities.

People with intellectual disabilities (and the families who support them) are at greater risk of exposure to a range of adversities than their non-disabled peers. But the relationship between exposure to adversity and subsequent health and well-being is complex. Some people, and some families, appear more resilient than others, that is, they have a relatively good developmental outcome despite experiencing circumstances that would be expected to bring about serious or deleterious outcome. Resilience is an interactive concept that refers to a relative resistance to environmental risk, or the overcoming of stress or adversity. According to the resilience theory, adaptation is dependent on the interplay between risk and protective factors. While the study of resilience has attracted considerable attention in other literatures focusing on typical development or individuals considered to be ‘at risk’ (Luthar, Sawyer & Brown, 2006; Luthar & Brown, 2007; Rutter, 1985; Schoon, 2006; Ungar, 2008), it is only more recently that this notion has gained currency in the area of intellectual disability. The aim of this special issue of JIDR was to publish high quality, peer-reviewed empirical or theoretical papers that investigated issues related to resilience among people with intellectual disabilities and/or the families who support them. The special issue was co-ordinated by the Families Special Research Group (SIRG) of the International Association for the Scientific Study of Intellectual Disability, and guest edited by us on behalf of that group. This issue contains three papers which all address resilience in parents of children or adults with intellectual disabilities. It is now well known that a child with ID does not inevitably cause stress and depression in parents; individual variation in parental wellbeing is great and depends upon a number of factors. Having a child with a disability involves joy and challenges, rewards and stress (qualities found in parenting a typical child as well). No benefit can be gained from neglecting either the positive or the negative impact that the parenting experience can have on the well-being of parents. Individual variation in the experience of positive and negative aspects of parenthood is evident as well as individual variation in outcome (e.g. well-being), but we know less about the processes leading to these individual differences. Resilience may derive from internal biological or psychological processes, relationship factors (e.g., social support) and aspects of the broader social context in which people live (e.g., wealth and the social capital available in communities, the capacity of different cultures to make sense of adversity). The papers presented here contribute to our knowledge by focusing on how stress is dealt with by the individual in the form of mental sets and the Journal of Intellectual Disability Research doi: 10.1111/j.1365-2788.2009.001225.x

Influence of urban vegetation on air pollution and noise exposure – A case study in Gothenburg, Sweden

Air pollution levels (NO2, PAHs, O3) were investigated, before (BLE) and after (ALE) leaf emergence, in the urban landscape of Gothenburg, Sweden. The aims were to study the 1) spatial and temporal variation in pollution levels between urban green areas, 2) effect of urban vegetation on air pollution levels at the same distance from a major emission source (traffic route), 3) improvement of urban air quality in urban parks compared to adjacent sites near traffic, 4) correlation between air pollution and noise in a park. O3 varied little over the urban landscape. NO2 varied strongly and was higher in situations strongly influenced by traffic. Four PAH variables were included: total PAH, total particle-bound PAH, the quantitatively important gaseous phenanthrene and the highly toxic particle-bound benzo(a)pyrene. The variation of PAHs was similar to NO2, but for certain PAHs the difference between highly and less polluted sites was larger than for NO2. At a vegetated site, NO2 and particulate PAH levels were lower than at a non-vegetated site at a certain distance from a busy traffic route. This effect was significantly larger ALE compared to BLE for NO2, indicating green leaf area to be highly significant factor for air quality improvement. For particulate PAHs, the effect was similar BLE and ALE, indicating that tree bark and branches also could be an important factor in reducing air pollution. Parks represented considerably cleaner local environments (park effect), which is likely to be a consequence of both a dilution (distance effect) and deposition. Noise and air pollution (NO2 and PAH) levels were strongly correlated. Comparison of noise levels BLE and ALE also showed that the presence of leaves significantly reduced noise levels. Our results are evidence that urban green spaces are beneficial for urban environmental quality, which is important to consider in urban planning.

Parents' experience of support in Sweden: its availability, accessibility, and quality.

Semi-structured interviews were conducted with six parents of children with intellectual disabilities, in the Western region of Sweden. The aim of the study was to explore and to gain a deeper understanding of parents’ experiences of received support for them and their children with intellectual disabilities. We focused particularly on their experiences of the availability, accessibility, and the quality of services. Parents in this study were unsure about what the diagnosis meant specifically for their child as well as for their whole family. Moreover, the parents experienced great difficulty in obtaining information about available services, which resulted in feelings of helplessness to some. Parents also reported that although services are available, they were not easily accessible. Lastly, parents felt that the quality of care and support were to some extent inadequate, as no attention was paid by professionals to their actual needs or wishes.

The choice of Pre-implantation Genetic Diagnosis (PGD), a qualitative study among men and women

Background: Previous qualitative studies have shown that the decision to undergo Pre-implantation Genetic Diagnosis (PGD) is a demanding situation that increases psychological burden and activates moral beliefs and cognitive assessments. Most studies are based on women’s experiences. Studies about the choice are mostly done in a hypothetical setting. Objective: The aim of this study was to investigate psychological aspects, the influence of the healthcare system and ethical considerations in relation to men and women’s decision to undergo PGD. Method: Nineteen couples (19 women and 17 men) all planning and eligible for PGD in Sweden were interviewed. Data were analysed with a thematic approach. Results: The analysis lead to the formation of a master theme, labelled Choosing. In addition, three subthemes emerged – In relation to myself, In relation to the child, and In relation to the society – and nine underlying categories. No differences were found between men and women concerning emotional depth or cognitive recognition of the decision. Conclusion: The men and women in this study were a heterogeneous group with great variations in reproductive history. However, they expressed common themes about what affected them in their deciding to undergo PGD. The themes are complex and activate ethical reasoning. The results of the present study are relevant for pre-PGD counselling, and indicate that support should be provided to men as well as to women.

Experiences of Pre-Implantation Genetic Diagnosis (PGD) in Sweden: a Three-Year Follow-Up of Men and Women

Men and women with a hereditary genetic disease are faced with different options when they wish to become parents. One is pre-implantation genetic diagnosis (PGD) which is a combination of in vitro fertilization (IVF) and genetic analysis of the embryo before implantation. The present study focused on men and women’s psychological experiences of PGD three years after applying for PGD. Nineteen women and seventeen men (i.e. seventeen couples and two women) participated. The interviews were analysed by thematic method. It is better to have tried was identified as a master theme, under which came three underlying sub-themes, which had the following headings: Practical experience of PGD, Psychological experience of PGD and Goals of PGD. The results show that men and women three years after PGD are still psychologically affected by their experience. The men and women raised concerns that their relationship had been affected, both positively and negatively, and feelings of anxiety and depression still remained. Healthcare services should recognize the heterogeneous nature of the group being studied and therefore the need for counselling can arise at different times and in relation to different areas, regardless of the outcome of the PGD.