Stress in Parents of Adults with Intellectual Disabilities Attending Special Olympics Competitions

Background It is important to determine how programmes serving the individual with intellectual disability may also help to reduce stress in parents of adult children with intellectual disabilities. The aim of this study was to test whether parents who frequently watch their children at Special Olympics (SO) competitions report less stress than those who watch with less frequency. Methods A total of 57 mothers and 39 fathers completed the Parenting Stress Index in reference to their children with intellectual disability, whose ages ranged from 17 to 42.3 years. Frequency of parental attendance at competition and volunteering for SO was also assessed. Results Parents who frequently attended their children's competitions reported less stress than those who attended with less frequency. Mothers who volunteer, reported more child‐related stress than those who did not. A number of other gender‐specific relations were found. Conclusions These results support the hypothesis that parents who frequently see their children compete in SO have a more positive parent–child experience than those who do not attend with the same frequency. Experimental research, with controlled pre–post designs, is needed to directly assess any causal effect.     

Changing Selves: a Grounded Theory Account of Belonging to a Self‐advocacy Group for People with Intellectual Disabilities1

Purpose To explore the experience of belonging to a self‐advocacy group for people with intellectual disabilities, and how membership of such a group impacts on individual members. Methods Eight people with intellectual disabilities, who belonged to a self‐advocacy group for at least 6 months, were interviewed about their experiences of membership. A grounded theory approach was used to generate and analyse the interview data. Results A model of the impact of belonging to a self‐advocacy group for people with intellectual disabilities on individual members' self‐concept is developed. The model proposes that participants' self‐concept changes as a result of group membership and that this process of change involves six key categories: joining the group; learning about and doing self‐advocacy; becoming aware of group aims and identity; experiencing a positive social environment; identifying positive change in self‐concept and seeing the future of self and group as interlinked. Conclusion Membership of a self‐advocacy group for people with intellectual disabilities changes the self‐concept of participants. The processes surrounding these changes have important implications for self‐advocacy groups both, in recruitment and in supporting group members.     

Sleep Problems in Children with Severe Intellectual Disabilities: What Help is being Provided?

Sleep problems are common and persistent in children with severe intellectual disabilities. Research conducted mainly in the 1980s suggested that the most widely used form of intervention was pharmacological although studies have demonstrated that behavioural management may be more appropriate. This study aimed to investigate whether the practical implications of such research had been acted upon by describing parents' experiences of interventions they had been offered and also their usefulness. Questionnaires were distributed via schools to parents of children with severe intellectual disabilities in Oxfordshire and Berkshire. Results are based on 209 replies (43% response rate). Only 47% of parents of children with sleep problems (n = 124) had received any form of treatment. Where treatment had been received, medication was still the most widely used form although parents considered behavioural interventions to be more helpful in reducing difficulties. 55% of parents of children with current sleep problems wanted to receive treatment, suggesting a gap in service provision. Possible reasons why 45% did not want to receive treatment are considered.     

Self‐expressed strengths and resources of children of parents with a mental illness: A systematic review

The aim of the present study was to explore the strengths children reported to have acquired while coping with their parents illness, and the external factors these children indicated had facilitated their coping process. A systematic literature search was conducted of peer‐reviewed papers that focused on self‐reported experiences of children with parents who had mental illness, and revealed their strengths and resources. The search included the following databases: MEDLINE, PsycINFO, and CINAHL. Results were filtered according to whether search terms appeared in the title or abstract. Fifty‐seven full‐text papers were reviewed; 26 of them met the inclusion criteria and were included in the review. The statements were analysed using content analysis. The search identified 160 relevant statements, 38 (24%) of which could be described as self‐reported strengths, and 122 (76%) as self‐reported resources. According to these statements, the children described themselves as more mature, independent, and empathic than their peers who did not have a parent with a mental illness, and as having acquired several abilities. The statements about resources indicated that the children regarded social support, information, and particularly the support of mental health‐care professionals as helpful when living with a parent with a mental illness. Recommendations for nursing actions to support children's ability to cope with their parents' illness are outlined.     

Factors Related to Positive Perceptions in Mothers of Children with Intellectual Disabilities

Background Existing theoretical and empirical work in the intellectual disability field has paid little attention to parents' positive perceptions of their child and the positive impact that the child may have on the family generally. The main aim of the present study was to explore the factors related to the mothers' positive perceptions of their child with intellectual disability. Methods The mothers of 41 children with intellectual disabilities completed a self‐report questionnaire that measured demographic factors, child demographic variables (including caregiving demand), social support, coping strategies and dimensions of positive perceptions. Results Mothers' perceptions of the child as a source of happiness/fulfilment and as a source of strength and family closeness were positively associated with reframing coping strategies. Mothers' perceptions of the child as a source of personal growth and maturity were also positively associated with reframing coping strategies, the helpfulness and usefulness of support from family and friends, and the caregiving demand. Conclusions The relationship between coping and parental positive perceptions requires more investigation both theoretically and empirically. This relationship may also have important implications for the support of families of children with intellectual disabilities.     

Parents' perceptions of the use of medication with children who are autistic

We investigated parents' perceptions of the use of medication with their children who have been diagnosed with PDD/autism. Seven children referred to an outpatient behavior management clinic for children with developmental disabilities and who were currently receiving medication for behavor problems were included in the study. Perceptions were measured using a 15-item likert-type rating scale addressing general changes in the child's behavioral and physical symptomatology, parent's perceived input into pharmacological treatment decisions, and other issues pertaining to the use of medication with their child. The results of this study indicate that the parents generally felt comfortable with the concept of using medication as a treatment intervention with their children. However, these parents also held generally unfavorable attitudes regarding the effectiveness of pharmacological treatment for their children's behavior problems.     

跨理论模型的照护行为干预对新诊断癫痫患儿家属照护行为及心理状况的影响

目的探讨跨理论模型(TTM)照护行为干预对新诊断癫痫患儿家属心理状况的影响。方法选择本市及周边地区2012年6月-2015年6月新诊断癫痫患儿的家属96例,采用随机数字表法分为观察组与对照组各48例。两组在干预前均采用变化阶段量表、焦虑自评量表(SAS)和抑郁自评量表(SDS)对其进行基线评估。对照组患儿接受系统治疗护理,患儿家属接受一般心理护理和健康教育,观察组在与对照组相同护理基础上,根据评估结果,针对患儿家属制定并实施个性化的TTM照护行为干预,为期6个月。干预后对两组患儿家属进行跟进评估,分析干预前后患儿家属在照护行为变化阶段的分布情况及SAS、SDS得分的变化。结果干预6个月后,两组患儿家属的SAS、SDS得分比较,观察组明显优于对照组,差异具有统计学意义(P0.01);观察组干预前后SAS、SDS得分比较,改善幅度明显大于对照组,差异有统计学意义(P0.01)。结论运用TTM为指导的照护行为干预,能有效改善新诊断癫痫患儿家属的照护行为,降低焦虑、抑郁水平,利于癫痫患儿的照护。     

Parental Involvement in the Residential Care of Persons with Intellectual Disability: The Impact of Parents' and Residents' Characteristics and the Process of Relocation

Background This study addresses three goals: (i) to describe the extent of parental involvement in residential care (post‐placement); (ii) to describe the extent of parental involvement in the relocation process (pre‐placement); and (iii) to examine the impact of residents' characteristics, parents' characteristics and pre‐placement parental involvement on post‐placement parental involvement. Methods Ninety‐seven parents of residents living in residential care facilities for people with intellectual disability completed the Parental Involvement in Residential Care Questionnaire that was constructed for this study. Results Post‐placement involvement was expressed by parents' high level of visiting to the residence, close direct contact with the resident and the staff, and low level of participation in decision making concerning their son/daughter and the operation of the residence. Most parents were not actively involved in the relocation process, did not participate in selecting the current residence and did not visit the residence prior to the move. However, the majority participated in a preparation program for parents whose son/daughter were candidates for out‐of‐home placement. Participants whose sons/daughters lived in the residence for fewer years or whose son's/daughter's level of intellectual disability was less severe reported a higher level of post‐placement involvement. These parents had fewer children at home and had participated in a longer preparation pre‐relocation program.     

What do parents of children with learning disabilities,ADHD, and related disorders deal with?

Children with learning disabilities, attention deficit/hyperactivity disorder (ADHD), and related disorders puzzle parents because of their many abilities and disabilities. It can also be difficult to understand how much of their behavior is the nature of the condition and how much is oppositional. It is all too easy for parents to "catch" a child's feelings of inadequacy and then feel bad as a parent. Parenting approaches that include clear, concise instructions; structure without rigidity; nurturing a child's gifts and interests; and constant approval of positive behavior help parents feel better and help children feel safe. It takes time for both children and parents to embrace the concept that being different does not mean being inferior and, in fact, can be a good thing. Parents need to be nurtured and praised to help them nurture and praise their children. Most parents use almost every resource they have to help their children flourish, and still, they worry they are not doing a good enough job. Usually they are!     

The Balancing Act: Meeting the Needs of all Children Including an Adolescent with Disabilities

Background The aim of this study was to explore parents’ experiences and strategies used when meeting the needs of all their children, including an adolescent with disabilities. Materials and methods A qualitative study design was employed. The study was conducted in two phases. (i) Secondary analysis of ecocultural interviews with 12 parent‐carers of more than one child, including an adolescent (10–21 years) with intellectual disabilities. (ii) In‐depth, semi‐structured interviews with a sub‐sample (n = 4) of parent‐carers. Data was analysed using Strauss & Corbin’s (1998) constant comparative method. Results Parents balanced their children’s needs through a combination of strategies driven by their goals, beliefs and values. Parents found this very challenging. They were always conscious of the needs of all of their children, although they could not necessarily meet all their children’s needs equally. Strategies that attended to all children simultaneously were preferred by most parents, but could not always be used. Parents, at times, used strategies that prioritized the needs of the adolescent with disabilities or siblings. Conclusions Findings add to knowledge on what families of adolescents with disabilities do day to day and specifically reveal how these parents meet the needs of their children. Practitioners, together with disability and mainstream services and systems, need to recognize parents’ goals, beliefs and values and the needs of the adolescent with disabilities. This will effectively aid the adolescent with disabilities, their siblings, parents and the whole of family life.     

Mothers of Children Who have an Intellectual Disability: Their Attributions,Emotions and Behavioural Responses to Their Child’s Challenging Behaviour

Background This paper examines the application of Weiner’s attribution model to the responses of mothers to the challenging behaviour of their children who have an intellectual disability. It was expected that the attributions, assignment of responsibility and emotional and behavioural responses of mothers of children with an intellectual disability would vary as a function of the child’s behavioural topography and level of intellectual disabilities. The paper further examines whether, as suggested by Weiner’s model, anger mediates the effect of attribution of responsibility on likelihood of punishment as an intervention. Method Fifty‐six mothers of children with an intellectual disability rated their attributions, assignment of responsibility and emotional and behavioural responses to three vignettes describing challenging behaviours. Results Mothers rated their children as significantly more in control of, responsible for, and felt significantly more angry about aggressive behaviour than stereotypic behaviour and were significantly more likely to punish aggressive behaviour than self‐injurious or stereotypic behaviour. Regression analysis suggests that mothers who assign more responsibility to their child were more likely to consider punishing their child and that this relationship is mediated by anger. Conclusions The study offers support for some aspects of Weiner’s attribution model with this group of parents. Implications for clinical work with parents of children who have an intellectual disability are discussed.     

Processes of enhanced self‐understanding during a counselling programme for parents of children with disabilities

Scand J Caring Sci; 2013; 27; 108–116 Processes of enhanced self‐understanding during a counselling programme for parents of children with disabilities Background: The stress and burden on parents of children with disabilities are well documented, and the parents’ way of handling the situation is crucial to the health and well‐being of all family members, including the child with special needs. We conducted a group‐based counselling programme for parents, based mainly on Gestalt education and personal construct theories, aiming at increasing the parents’ ability to handle the situation. Aims: To explore the parents’ experiences from processes of change after the counselling programme. Method design: This qualitative study is based on modified grounded theory. Method: The study conducted in Norway examines the experiences of 67 parents (of whom 29 fathers) of children with disabilities. Information was collected through focus group discussions after finishing their sessions of the counselling programme. Findings: From the parents’ experiences, the following categories were developed: feeling motivated to communicate, describing oneself in new words, being inspired to experience one’s own emotions, being more present and in charge and making a difference by taking new steps. The core category in our analysis turned out to be Improved handling of the situation by enhanced self‐understanding. The parents seemed to redevelop their self‐understanding through new experiences of themselves. They emphasized the importance of a secure setting of peers with similar experiences and skilled counsellors to feel free to explore one’s own emotions with connecting thoughts and bodily reactions. Discussion of existential issues as one’s own values also contributed to enhanced self‐understanding, which strengthened the parents to find new possibilities and priorities in handling the situation. Conclusions: The parents described subjective processes of awareness and self‐reflection as important for being able to start a process towards enhanced self‐understanding, which helped to detect one’s own values and new ways of acting. These experiences may be relevant for the parents and for the conduction of future counselling.     

The Chicago Parent Program: Comparing 1-year outcomes for African American and Latino parents of young children

Data were merged from two prevention randomized trials testing 1‐year outcomes of a parenting skills program, the Chicago Parent Program (CPP) and comparing its effects for African‐American (n = 291) versus Latino (n = 213) parents and their preschool children. Compared to controls, intervention parents had improved self‐efficacy, used less corporal punishment and more consistent discipline, and demonstrated more positive parenting. Intervention children had greater reductions in behavior problems based on parent‐report, teacher‐report, and observation. Although improvements from the CPP were evident for parents in both racial/ethnic groups, Latino parents reported greater improvements in their children's behavior and in parenting self‐efficacy but exhibited greater decreases in praise. Findings support the efficacy of the CPP for African American and Latino parents and young children from low‐income urban communities. © 2012 Wiley Periodicals, Inc. Res Nurs Health 35:475–489, 2012     

Comparisons of Parent Cardiovascular Knowledge,Attitudes, and Behaviors Based on Screening and Perceived Child Risks

Questionnaire reports and universal screening procedures from 244 children (kindergarten, 5th grade, and 9th grade) were used to explore differences in parent health knowledge and attitudes of cardiovascular risks among children and parental involvement in promoting healthy lifestyles relative to whether their children were identified as being overweight or at risk of being overweight. The knowledge, attitudes, and behaviors of the parents of children who were identified as being at risk or overweight were further examined based on their perceptions of their children's level of risk. Parents' reports demonstrated significantly greater parent encouragement and knowledge of issues related to eating healthier foods and ways to cut calories among parents of children who were identified as being at risk or already overweight. A significant portion of parents underestimated their children's weight risks. Differences in parents' appraisals of their children's overweight risks were associated with differences in their knowledge, attitudes, and behaviors. These findings illustrate the need to address inaccuracies in parents' assessments of their children's overweight risks to improve parent investment and involvement in children's health modification programs.     

Parent coping and child distress behaviors during invasive procedures for childhood cancer

This study examines what parents identified as their primary stressor before their child's invasive procedure, what coping strategies were used to manage the stress, what level of distress their children experienced during each phase of the procedure, and whether parents' coping modes were associated with their children's distress. Twenty children with cancer from 3 to 11 years of age and the parent present during the procedure participated in the study. Parents' primary stressors were identified as uncertainty about parent role and anticipating the child's distress during the procedure. Although parents used both emotion-focused and problem-focused strategies for coping with their primary stressors, they primarily relied on emotion-focused strategies. Children experienced the most behavioral distress during the procedural phase, and girls exhibited more distress than boys. The parents' coping modes were not associated with their children's distress, but children of parents whose primary stressor was uncertainty about parent role had higher distress than children of parents whose primary stressor was anticipating the child's distress. The findings related to parents' stressors, their coping strategies, and their children's distress were consistent with previous research. Directions for future research and suggestions for dealing with invasive procedures for childhood cancer are described.     

Parents of Adults with Intellectual Disabilities: Quality of Life and Experiences of Caring

This study examined a UK sample of parents caring for their adult offspring with intellectual disabilities, and the factors contributing to their quality of life and experiences of caregiving. Structured interviews were conducted with 62 parents of adults with intellectual disabilities. On several indices of quality of life, parents did not seem to be functioning as well as caregiving parents in the US, or as well as adults in the general US population.The offspring's level of challenging behaviour and physical dependency and the parent's satisfaction with informal support were associated with parental quality of life. The salience that parents placed on their post‐parental life style was also associated with quality of life, with ‘captive’ parents faring more poorly than ‘captivated’ parents.     

Examining the relation between empowerment and civic engagement among parents of individuals with intellectual and developmental disabilities

Internationally, parents of children with intellectual and developmental disabilities have historically engaged in advocacy leading to compulsory education for their children. However, few parents have reported civic engagement. Although empowerment is related to parent advocacy, it is unclear whether empowerment relates to civic engagement. Thus, our study examined parent and child correlates of empowerment and civic engagement, and the relation between empowerment and civic engagement among 235 parents of children with intellectual and developmental disabilities across five states in the United States. Gender and special education knowledge were significant correlates of empowerment and civic engagement. There was a significant positive correlation between empowerment and civic engagement. Implications regarding future research and ways to promote parent empowerment and civic engagement are discussed.     

Home‐based Programmes for Parents with Intellectual Disabilities: Lessons from Practice

Background Increasing emphasis is being given to carrying out parent education programmes at home with widely reported benefits. The purpose of this paper is to draw lessons for practitioners from implementing a randomized trial of a home‐based parent education programme for parents with intellectual disabilities that addressed child health and safety issues. Methods A thematic analysis of case notes and parent feedback from the 45 parent participants in this programme was conducted prior to two team sessions to discuss the findings. Results Programme‐specific issues included format, content and presentation style. Themes relevant to home‐based programmes for parents with intellectual disabilities more generally included the suitability of the home as a learning environment; identifying parent priorities; parent readiness to learn; and parent control (or lack of) over the home environment. In addition, practice points for parent educators were identified. Conclusions The home environment benefits both teaching and learning, however, as this paper highlights careful consideration needs to be given to each parent‐learner's home situation. We recommend that in future the processes involved in home‐based programmes be reported alongside programme outcomes.     

Examining the Needs of Bereaved Parents in the Pediatric Intensive Care Unit: A Qualitative Study

The pediatric intensive care unit (PICU) is a high-tech setting aimed at restoring health to critically ill children. When childhood death occurs in the PICU, it constitutes a special context for parent bereavement. The purpose of this interdisciplinary qualitative research was to gain a deeper understanding of parents' needs around the time of their child's death in the PICU. Through interviews and focus groups with bereaved parents and hospital chaplains, categories of parents' needs emerged. Deeper understanding of parents' needs will allow health professionals to better support parents during bereavement as well as to provide more customized care.     

Measuring participation in a prevention trial with parents of young children

This paper describes parent participation in a clinical trial of preventive parent training (PT) targeting low-income parents of young children. Participation encompassed enrollment, attendance, and engagement. Average enrollment rate was 34.9%, although enrollment rates were significantly higher in the control (39.1%) than in the intervention (30.6%) centers. Parents attended an average of 39% of the PT sessions. Higher attendance was associated with lower parenting self-efficacy, more parent-reported child behavior problems, and attending the first PT session. Level of engagement in the PT sessions was related to improvements in parent and child outcomes. Findings suggest that attendance is linked to parent perceived need for help and that resources should be focused on ensuring parent attendance at the first intervention session.