Well-being In Parents Of Children Research Articles

Mindfulness, Stress and Well-Being in Parents of Children with Autism Spectrum Disorder: A Systematic Review

Parenting a child with Autism Spectrum Disorder (ASD) is often associated with reduced quality of life, high stress, depression and anxiety due to the ongoing nature of care. This review systematically investigated the efficacy of mindfulness interventions in reducing stress and increasing psychological wellbeing in parents of children with ASD. A comprehensive electronic database search was conducted for relevant articles. Only studies investigating parental stress or a measure of psychological wellbeing in parents of children with ASD post a mindfulness-based intervention were included. Ten studies met inclusion criteria; each was examined for treatment fidelity. All included studies contributed at least one self-report finding supporting the efficacy of mindfulness interventions in reducing stress and increasing psychological wellbeing. Three studies included physiological measures of reduced stress and emotional responses. Two reported concomitant improvements in child behavior. Mindfulness-based interventions potentially have long-term positive effects on stress levels and psychological wellbeing of parents of children with ASD, in addition to enhancing their child’s behavior. Future research is needed to develop a cost and time effective intervention aimed at maximising efficacy of current interventions in children with ASD and their parents.

Coping and Well-Being in Parents of Children with Autism Spectrum Disorders (ASD).

This study examined psychological well-being and coping in parents of children with ASD and parents of typically developing children. 73 parents of children with ASD and 63 parents of typically developing children completed a survey. Parents of children with ASD reported significantly more parenting stress symptoms (i.e., negative parental self-views, lower satisfaction with parent-child bond, and experiences of difficult child behaviors), more depression symptoms, and more frequent use of Active Avoidance coping, than parents of typically developing children. Parents of children with ASD did not differ significantly in psychological well-being and coping when compared as according to child's diagnosis. Study results reinforced the importance of addressing well-being and coping needs of parents of children with ASD.

Self-Compassion and Well-Being in Parents of Children with Autism

Parents of children with autism are faced with difficult and unique daily stressors associated with their child’s disorder. The personal characteristics of parents can influence how they approach stressful life events and potentially help them cope with some of the deleterious effects associated with extreme stress. One factor that may be an important coping strategy is self-compassion, which involves being kind to oneself in times of difficulty, recognizing the shared nature of human suffering, and being mindfully aware of negative thoughts and emotions. This study examined the association between self-compassion and well-being in 51 parents of a child with autism using self-report measures. Self-compassion was positively associated with life satisfaction, hope, and goal reengagement and negatively associated with depression and parental stress. Even though child symptom severity is often the strongest predictor of negative adjustment for parents, self-compassion universally predicted parental well-being over and above the effects of child symptom severity. Results suggest that self-compassion may play a significant role in well-being for parents of children with autism. Implications for future research and applications of the construct of self-compassion are discussed.

Caregiving Demands and Well-being in Parents of Children Treated With Outpatient or Inpatient Methotrexate Infusion

Parent well-being is affected by their child's oncology treatment regimen and associated caregiving demand. Parental caregiving demands and well-being were evaluated in 161 parents from 47 sites whose child was randomized to receive either a 4-hour (outpatient) or 24-hour (inpatient) methotrexate infusion during consolidation treatment for acute lymphoblastic leukemia. A majority of patients randomized to the 4-hour infusion (66.3%) received the infusion as an inpatient. The most frequently reported reasons for this were lack of an adequate outpatient facility (53.6%) and physician preference (25.0%). There were no differences between caregiving demand and well-being total scores by either randomized or actual infusion location with one exception: well-being scale fatigue scores were significantly greater (P=0.001) for parents whose child received the outpatient infusion. Mean total well-being scores for both the 24-hour arm (µ=42.6; SD 16.2) and the 4-hour arm (µ=40.6; SD 14.1) were elevated compared to healthy control populations. Additional research is needed to characterize impact of treatment setting on parental caregiving demand and well-being during their child's treatment for acute lymphoblastic leukemia. Investigators examining impact of treatment location in randomized clinical trials need to control for institutional variability in outpatient care delivery resources.

Resilience across the Continuum of Care

Resilience across the Continuum of Care

Vicarious futurity, hope, and well-being in parents of children with autism spectrum disorder

Hope is shown to provide resiliency for parents of children with autism spectrum disorders (ASDs) against the negative effects related to extreme parenting stressors. The broad positivity of hope may overlook opposing parental feelings about their child that may be important for well-being. Vicarious futurity (VF) is the hope and despair a parent feels for the future of their child, which reflects both positive and negative components of parental attitudes directed toward their child. In this study we examined how vicarious futurity related to hope, and how each predicted well-being in 71 parents (53 mothers) of children with ASD. Results indicated that regardless of child symptom severity, vicarious futurity strongly predicted stress experienced by parents, hope predicted depressive symptoms, and both predicted life satisfaction. Vicarious futurity and hope were found to be weakly correlated, indicating that both constructs are largely independent when influencing the well-being of parents raising a child with ASD. General hopefulness is important for parental well-being, but in the unique context of parents raising children with ASD, child focused constructs that measure both positive and negative components, such as vicarious futurity, may be more informative and useful when understanding how parental feelings about their child influence their own well-being.

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

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. 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. 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. 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.

Psychological well-being in parents of children with Angelman, Cornelia de Lange and Cri du Chat syndromes

The current study focuses on mothers and fathers of children with three rare genetic syndromes that are relatively unexplored in terms of family experience: Angelman syndrome, Cornelia de Lange syndrome and Cri du Chat syndrome. Parents of children with Angelman syndrome (n =15), Cornelia de Lange syndrome (n = 16) and Cri du Chat syndrome (n = 18), and a matched comparison group of parents of children with autism and intellectual disabilities (n = 20) completed questionnaires on both psychological distress (stress, anxiety, depression) and positive psychological functioning. Parents of children with Angelman syndrome consistently reported the highest levels of psychological distress, and parents of children with Cornelia de Lange syndrome the lowest, with parents of children with Cri du Chat syndrome and autism scoring between these two. Positive psychological functioning was similar across the four aetiology groups. Parents of children with rare genetic syndromes are at risk for high levels of stress and mental health problems. Methodological issues and the practical applications of these results are discussed.

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

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. 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. 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). 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.

Child-Parent Wellbeing in a Paediatric Ward: The Role of Music Therapy in Supporting Children and Their Parents Facing the Challenge of Hospitalisation

This report, based on clinical practice on a children’s ward in New Zealand, examines the role of short-term music therapy in supporting children and their parents[1] facing the difficulties of hospitalisation. It endeavours to explore three questions. How might music therapy support hospitalised children? How can it support parents of hospitalised children? Is it important/valuable for music therapists working in a paediatric ward to involve parent(s) in music therapy sessions? Three hospitalised children (aged 11 months, 5 and 7 years), who were accompanied by a parent, participated in a single individual music therapy session. From the clinical notes, semi-structured interviews with the children’s parents and a staff member, and my own reflective journal it was indicated that music therapy supported the psychosocial needs of the paediatric patients and their parents in many ways. For the children music therapy: 1) promoted normalisation; and 2) provided emotional/psychological support. For parents, it: 1) elicited positive changes in mood; 2) reduced anxiety; and 3) supported parental learning/parenting. Furthermore, the findings suggested that the wellbeing of the parent-child relationship can be supported during music therapy. The importance of parental involvement varied for each case, and highlighted different views between therapist, staff member and parents regarding this. Factors that may determine parental involvement and the benefits of both parental presence and absence during sessions were elicited. The report suggests that music therapy has the potential positively to support paediatric wards in New Zealand to provide an environment that is responsive to the psychosocial needs of hospitalised children and their parents.

Daily stress, coping, and well-being in parents of children with autism: A multilevel modeling approach.

This study used a repeated daily measurement design to examine the direct and moderating effects of coping on daily psychological distress and well-being in parents of children with Autism Spectrum Disorders (ASD). Twice weekly over a 12-week period, 93 parents provided reports of their daily stress, coping responses, and end-of-day mood. Multilevel modeling analyses identified 5 coping responses (e.g., seeking support, positive reframing) that predicted increased daily positive mood and 4 (e.g., escape, withdrawal) that were associated with decreased positive mood. Similarly, 2 coping responses were associated with decreased daily negative mood and 5 predicted increased negative mood. The moderating effects of gender and the 11 coping responses were also examined. Gender did not moderate the daily coping?mood relationship, however 3 coping responses (emotional regulation, social support, and worrying) were found to moderate the daily stress?mood relationship. Additionally, ASD symptomatology, and time since an ASD diagnosis were not found to predict daily parental mood. This study is perhaps the first to identify coping responses that enhance daily well-being and mitigate daily distress in parents of children with ASD.