Resilience, coherence and stress in families of children with intellectual disabilities

This study addresses factors accounting for resilience in the face of adversity and ongoing stress in families of children with intellectual disabilities. 327 families were examined. Measures of family sense of coherence (FSOC), family functioning, stress and coping behaviors were administered. Additionally, measures of the children's level of practical, cognitive and social competencies, as well as problem behaviors were applied. Structural equation modeling was used to examine the relationship between FSOC, family functioning and children's competencies on the one side and parental stress on the other side. Results showed that for the parental couples, as well as for the mothers when regarded separately, FSOC and level of children's competencies were significant predictors of stress. For the fathers, family functioning was a better predictor of stress than family coherence. In order to identify differential indications for counseling practice, moderating effects of family structure, sex and level of the children's competencies were examined. Children's level of practical, social and cognitive competencies emerged as moderator of the relation between stress and family functioning or intensifying of the parents' relationship as a coping behavior. This study demonstrates the significance of family-related variables in the adaptation to living with a child with an intellectual disability.     

Hope as a psychological resilience factor in mothers and fathers of children with intellectual disabilities

Background Positive psychology is an area gaining credence within the field of intellectual disability (ID). Hope is one facet of positive psychology that is relatively unstudied in parents of children with ID. In the present study, we explore hope and its relationships with parental well‐being in parents of school‐aged children with ID. Method A total of 138 mothers and 58 fathers of children with ID took part in a questionnaire‐based study. Parents reported on their feelings of hope and positive affect, other dimensions of psychological well‐being (anxiety, depression and stress), and on their child's behaviour. For this study, hope was measured as a goal driven behaviour comprising two components: agency (the perception that one can reach his/her goals) and pathways (the perception that one can find alternative routes to reach these goals should the need arise). Results For mothers, regression analyses revealed that lower levels of hope (agency and pathways) and more child behaviour problems predicted maternal depression. Positive affect was predicted by less problematic child behaviour and by higher levels of hope agency. For fathers, anxiety and depression were predicted by low hope agency and positive affect was predicted by high hope agency. Hope pathways was not a significant predictor of paternal well‐being. Hope agency and pathways interacted in the prediction of maternal depression such that mothers reporting high levels of both hope dimensions reported the lowest levels of depressive symptoms. Conclusions Hope is a construct that merits further investigation within families research, and is potentially a factor that could be utilised in intervention to help increase familial well‐being.     

Predicting maternal parenting stress in middle childhood: the roles of child intellectual status, behaviour problems and social skills

Background Parents of children with intellectual disabilities (ID) typically report elevated levels of parenting stress, and child behaviour problems are a strong predictor of heightened parenting stress. Interestingly, few studies have examined child characteristics beyond behaviour problems that may also contribute to parenting stress. The present longitudinal study examined the contribution of child social skills to maternal parenting stress across middle childhood, as well as the direction of the relationship between child social skills and parenting stress. Method Families of children with ID (n = 74) or typical development (TD) (n = 115) participated over a 2‐year period. Maternal parenting stress, child behaviour problems and child social skills were assessed at child ages six and eight. Results Child social skills accounted for unique variance in maternal parenting stress above and beyond child intellectual status and child behaviour problems. As the children matured, there was a significant interaction between child social skills and behaviour problems in predicting parenting stress. With respect to the direction of these effects, a cross‐lagged panel analysis indicated that early parenting stress contributed to later social skills difficulties for children, but the path from children's early social skills to later parenting stress was not supported, once child behaviour problems and intellectual status were accounted for. Conclusion When examining parenting stress, child social skills are an important variable to consider, especially in the context of child behaviour problems. Early parenting stress predicted child social skills difficulties over time, highlighting parenting stress as a key target for intervention.     

Predictors of parenting stress among Malaysian mothers of children with Down syndrome

Background Having children with intellectual disability can be stressful for most parents. Currently there are very few studies focusing on parenting stress among mothers of children with Down syndrome (DS) in Asia. The present study examined the level of parenting stress experienced by Malaysian mothers of children with DS and evaluated the child and maternal factors that contributed to parenting stress based on Hill's ABC‐X Model (Hill 1949). Methods We conducted a cross‐sectional study of mothers of children with DS between the ages of 2–12 years during February–June 2008 in Kedah, a state in Peninsular Malaysia. We used self‐administered questionnaires to gather data on parenting stress, child's birth history and current behavioural problems, as well as the maternal sociodemographic characteristics, coping styles and psychological well‐being. Parental Stress Scale (PSS) was used to assess parenting stress. Measures of child's behavioural problem using Pediatric Symptom Checklist, mother's coping style using Carver et al. (1989 ) COPE inventory and their psychological well‐being using Lovibond and Lovibond (1995 ) DASS21, a scale assessing depression, anxiety and stress were also carried out. Results The 147 mothers who participated in the study had an average age of 43.1 years (SD = 7.6 years), of whom 94.6% were married, 57.1% had secondary level education and 28.6% were working outside their home. Based on PSS, mean parenting stress was 37.6 (SD = 8.1). Parenting stress was significantly higher among mothers who reported having children with behavioural problems. However, parenting stress was modified by positive coping styles and negative maternal psychological well‐being. The final model based on hierarchical regression analysis identified maternal depression and lack of acceptance as significant predictors of parenting stress rather than child's behavioural problems. Conclusion Mean parenting stress among mothers of children with DS significantly differed by behavioural problems in their children. Parenting stress is also significantly correlated with frequent use of acceptance, religious and optimist coping styles, and presence of maternal depressive, anxiety and stress symptoms. However, hierarchical regression analysis identified maternal depression and lack of acceptance of having a child with DS as the most significant predictors of parenting stress in these mothers.     

Depression in mothers and fathers of children with intellectual disability

Parental depression was assessed using the Beck Depression Inventory (BDI) in 216 families with children with autism and/or intellectual disability (ID), and in 214 control families. Mothers with children with autism had higher depression scores (mean = 11.8) than mothers of children with ID without autism (mean = 9.2), who in turn, had higher depression scores than fathers of children with autism (mean = 6.2), fathers of children with ID without autism (mean = 5.0), and control mothers (mean = 5.0) and fathers (mean = 4.1). Forty‐five per cent of mothers with children with ID without autism and 50% of mothers with children with autism had elevated depression scores (BDI > 9), compared to 15–21% in the other groups. Single mothers of children with disabilities were found to be more vulnerable to severe depression than mothers living with a partner.     

Psychological variables as correlates of adjustment in mothers of children with intellectual disabilities: cross-sectional and longitudinal relationships

Background Existing research studies suggest that parenting a child with intellectual disabilities (ID) can be a stressful experience. However, there are few data addressing the question of how or why parents might experience considerable distress. In the present study, psychological variables (acceptance, mindfulness, avoidant coping) are explored that may explain some variance in maternal distress. Method Questionnaire data were gathered from mothers of children attending special schools at two time points, 18 months apart (n = 91 at Time 1; n = 57 at Time 2). In addition to measures of the child's functioning, the questionnaire pack included: a measure of acceptance of unwanted thoughts/feelings; a measure of attention to the present (mindfulness); a measure of active avoidance coping; measures of maternal anxiety, depression and stress; and a measure of mothers' positive perceptions of their child. Results In cross‐sectional analysis, acceptance was negatively associated with maternal anxiety, depression and stress, such that mothers who were generally more accepting reported fewer psychological adjustment problems. Longitudinal analysis showed that acceptance is bidirectionally related to anxiety and depression. Mindfulness was not significantly related to maternal distress, and avoidance coping was positively cross‐sectionally associated with depression only. There were no associations between psychological variables and maternal positive perceptions. Conclusions These data suggest that acceptance, in particular, may be a construct that explains some variance in maternal distress. Further research could focus on the utility of acceptance‐based interventions (e.g. Acceptance and Commitment Therapy) in the support of families with a child with ID.     

Socioeconomic and psychological variables as risk and protective factors for parental well-being in families of children with intellectual disabilities

Background The first aim of the present study was to estimate the extent to which differences in well‐being in parents of children with and without intellectual disability (ID) in Sweden can be accounted for by differences in the presence of the risk factors: (1) child disability; (2) socioeconomic disadvantage; (3) household composition; and (4) parental characteristics. The second aim was concerned with individual variation in well‐being within the group of parents of children with ID. The aim was to estimate if protective factors such as parental personality characteristics (sense of coherence), perceived positive impact of the child and satisfaction with participation in different arenas of life explained variation in well‐being in mothers and fathers of children with ID over and above that explained by the risk factors. Method Parents of children with ID (62 mothers and 49 fathers) and control children (183 mothers and 141 fathers) completed postal surveys on well‐being, socioeconomic situation, health, sense of coherence, satisfaction with participation in different arenas of life and the child's impact on the family. Results The results showed that mothers of children with ID had lower levels of well‐being than fathers and control parents, but the presence of a child with ID did not in itself predict poorer maternal well‐being. Rather, differences in economic hardship and self‐rated health were the strongest predictors for well‐being. It was further found that 67.7% of the mothers of children with ID scored within the high well‐being group. The predictive power of the model increased significantly for both fathers and mothers when protective factors were added to the model (42 and 78% explained variance compared with 25% with only risk factors). Conclusions Well‐being of parents with a child with ID is dependent upon the interplay of risk and protective factors and research needs to address these variables simultaneously.     

Motor activation in people with profound intellectual and multiple disabilities in daily practice

Background People with profound intellectual and multiple disabilities (PIMD) are at risk of being motorically inactive. This study investigated the degree and type of motor activation in daily practice and its relationship to personal and contextual factors.

Method A total of 58 participants with PIMD participated in the study. Data concerning the motor activation were collected by means of a diary over a period of 14 days. Relationships to personal and contextual factors were analysed using multilevel analyses.

Results The mean number of transfers was 3.1 times per day (range: 0–9, SD?=?1.4), the mean number of relocations was 7.7 times per day (range: 2–13, SD?=?2.5), and the mean number of motor activities offered was 1.5 per day (range: 0–10, SD?=?1.9). Relationships to age, gender, location, and day of week were found.

Conclusion Motor activation seems to be a minor part of the support provided to people with PIMD.     

Fair shares? Supporting families caring for adult persons with intellectual disabilities

Background Although the majority of adult persons with intellectual disabilities are cared for by their families, remarkably little is known of the characteristics of their carers, the support services they receive and their unmet needs. A particular concern is whether or not carers have equitable access to services. Method Information was gathered from service staff who knew best the person with the disability. A standard pro forma was used with a representative sample of over 1500 family carers in Northern Ireland (26% of the estimated population). Results Nearly half of the people were being cared for by both parents, but around one third lived with lone carers and 20% with another relative. These subgroups of carers varied significantly in their personal characteristics and in terms of the person for whom they cared. However, Regression Analyses identified that their relative's higher dependency in person care was the only common variable that was predictive of carers’ access to support services. A possible measure of unmet need for various support services was derived. Conclusions Services need to pay greater attention to the characteristics of family carers so as to overcome some of the present inequities in supports offered to them. Further areas for future research are identified.     

Predictors of care-giver stress in families of preschool-aged children with developmental disabilities

Background This study examined the predictors, mediators and moderators of parent stress in families of preschool‐aged children with developmental disability. Method One hundred and five mothers of preschool‐aged children with developmental disability completed assessment measures addressing the key variables. Results Analyses demonstrated that the difficulty parents experienced in completing specific care‐ giving tasks, behaviour problems during these care‐giving tasks, and level of child disability, respectively, were significant predictors of level of parent stress. In addition, parents’ cognitive appraisal of care‐giving responsibilities had a mediating effect on the relationship between the child’s level of disability and parent stress. Mothers’ level of social support had a moderating effect on the relationship between key independent variables and level of parent stress. Conclusions Difficulty of care‐giving tasks, difficult child behaviour during care‐giving tasks, and level of child disability are the primary factors which contribute to parent stress. Implications of these findings for future research and clinical practice are outlined.     

The effects of a home-based intervention for young children with intellectual disabilities in Vietnam

Background   This study was conducted to examine the impact of a 1-year intervention for children with intellectual disabilities (ID) in Vietnam.
Method   Subjects were 30 preschool-aged children with ID (ages 3 to 6 years). Sixteen were assigned to an intervention group and 14 to a control group. Based on the Portage Curriculum ( CESA 5 2003 ), the intervention trained parents to work with their children through modelling and coaching by teachers during weekly home visits.
Results   Comparison of pre-, mid- and post-intervention assessments of the children based on the Vineland Adaptive Behavior Scales ( Sparrow et al. 1984a ) indicated that the intervention was promising: children in the intervention group improved significantly in most domains of adaptive behaviours, and also performed significantly better than the control group in the areas of personal care and motor skills.
Conclusions   The results from the Vietnam programme are discussed in terms of its implications and strategies for developing programmes for children with disabilities in developing countries.     

Post-traumatic stress disorder in young people with intellectual disability

Background Post-traumatic stress disorder (PTSD) is common and treatable. There is extensive research on people of average intelligence yet little on individuals with developmental disabilities. Methods We report two people with intellectual disability (ID) who experienced PTSD. The relevance of their developmental difficulties, social and communication profiles, attentional skills, and causes of these, to their presentations is discussed. Results Both individuals have fragile X syndrome and severe ID. One has Diagnostic and Statistical Manual – 4th Edition (DSM-IV) autistic disorder; the other DSM-IV attention deficit-hyperactivity disorder. They experienced developmental and psychological regressions, new challenging behaviours and exacerbations of existing ones coincident with emotional trauma. PTSD symptoms and phenomena were identifiable despite intellectual and communicatory impairments. Conclusion Presentation of PTSD is influenced by degree and cause of ID, social circumstances, social and communicatory skills, nature and timing of traumatic experience and subsequent management. The paucity of literature suggests it is missed frequently in individuals with ID who risk having problems misattributed to other causes with potential for inappropriate interventions.     

Parenting stress and coping styles in mothers and fathers of pre‐school children with autism and Down syndrome

Background The study examined the profile of stress in mothers and fathers of preschool children with autism, Down syndrome and typically developing children. A further aim was to assess the association between parenting stress and coping style. Methods A total of 162 parents were examined using Holroyd's 66‐item short form of Questionnaire of Resources and Stress for Families with Chronically Ill or Handicapped Members and the Coping Inventory for Stressful Situations by Endler and Parker. Results and Conclusions The results indicated a higher level of stress in parents of children with autism. Additionally, an interaction effect was revealed between child diagnostic group and parent's gender for two scales of parenting stress: dependency and management and limits of family opportunities. Mothers of children with autism scored higher than fathers in parental stress; no such differences were found in the group of parents of children with Down syndrome and typically developing children. It was also found that parents of children with autism differed from parents of typically developing children in social diversion coping. Emotion‐oriented coping was the predictor for parental stress in the samples of parents of children with autism and Down syndrome, and task‐oriented coping was the predictor of parental stress in the sample of parents of typically developing children. The results strongly supported earlier findings on parenting stress in parents of children with autism. They also shed interesting light on the relationship between coping styles and parental stress.     

Children born to women with intellectual disabilities - 5-year incidence in a Swedish county

Background Families with parental intellectual disabilities (ID) are likely to need support in achieving a decent family life. In order to accurately plan for such support services, society needs data regarding the occurrence of those parents and their children. The aim of this study was to investigate the 5‐year incidence of children born to women with ID in a county in Sweden. Methods Women born between 1975 and 1989 were identified from school registers for children and adolescents with ID in the county of Blekinge. The women's personal identification numbers were, in 2010, linked and matched with the Swedish Medical Birth Register. Results In total, 98 women with ID were identified. Nine of these had given birth to children; one woman to two children and eight women to one child each. The 10 children were born between 2004 and 2008. Conclusion The incidence rate calculated as a result of the present study indicates that approximately 2.12 per 1000 children are born per year to women with ID. For the whole of Sweden that rate indicates an incidence of approximately 225 children each year. On the basis of this, the prevalence of children (aged 0–18 years) being born to women with ID is estimated at about 4050.     

6个月婴儿母亲育儿压力调查

目的:调查南京市主城区6个月婴儿母亲的育儿压力,并分析相关的影响因素。方法:采用简式育儿压力问卷(PSI-SF)和自编基本情况调查表对随机抽取的南京市11个主城区420对6个月婴儿及婴儿母亲进行调查与分析。结果:母亲的文化程度与育儿压力呈负相关;婴儿的性别、家庭收入及母亲年龄与母亲的育儿压力差异无统计学意义。结论:婴儿母亲的受教育程度与婴儿母亲的育儿压力有显著相关性。     

Quality of life of adults with intellectual disabilities who live with families in Taiwan

Background Little research has been conducted about the quality of life (QOL) of people with intellectual disabilities (ID) in Taiwan, particularly their subjective QOL. This study examined the personal perceptions of these individuals as measured on internationally recognized core QOL domains and indicators. Methods A census interview survey was conducted in Hsin‐Chu City in Taiwan; 233 adults aged over 16 years with mild ID and living with their families participated in the study. Data were collected using the Cross‐Cultural QOL Indicators (CCQOLI) together with socio‐demographic data that included ‘activities of daily living’ and ‘instrumental activities of daily living’ (IADL). The CCQOLI were based on the three most commonly reported indicators of each of the eight QOL domains: emotional well‐being, interpersonal relations, material well‐being, personal development, physical well‐being, self‐determination, social inclusion and rights. Each indicator has two sets of questions related to the indicator's ‘importance’ and ‘use’. These are answered by the respondent using a 4‐point Likert scale. Results The importance and use of the QOL indicators were evaluated positively by the respondents. The adults' individual characteristics, namely IADL and educational level, were significant predictors for the ‘importance’ while the adults' perceptions of ‘use’ for overall QOL were significantly affected by his/her socio‐economic data, that is, residence location and father's educational level. Conclusions The present study addressed the issue of self‐reported QOL in people with ID in Taiwanese society, becoming a possible benchmark for similar measurements carried out by disability movements there. These results contribute to current advocacy efforts towards creating a supportive environment for people with ID.