Sorrow, coping and resiliency: parents of children with cerebral palsy share their experiences.

Purpose: To explore the grieving, coping and resiliency experiences of parents of children with cerebral palsy (CP) and to investigate the suitability of chronic sorrow theory as a framework to understand those experiences. Methods: This study combined focus groups with a web-based cross-sectional survey to explore chronic sorrow in parents of children with CP. Eight parents of children with CP participated in focus groups. The discussion was transcribed verbatim and thematic analysis was performed. A further 94 parents participated in the web-based survey study in which they completed the Adapted Burke Questionnaire on chronic sorrow. A content analysis of responses was used to confirm the primary qualitative analysis. Results: The reports of parents in the focus group were consistent with chronic sorrow theory, as were the responses of parents to the web-based survey. Some parents found the diagnosis itself a distressing time whereas others found it a relief. Parents reported that times of medical and allied health intervention were particularly challenging. Conclusion: Chronic sorry theory is a useful way of understanding the experiences of parents of children with CP. It is recommended that health practitioners are mindful that, even years after diagnosis, parents of children with CP may experience intensified chronic sorrow symptoms following a triggering event and that this is normal

Randomized controlled trial of a web-based mult-imodal therapy program for executive functioning in children and adolescents with unilateral cerebral palsy

Purpose state: Determine the efficacy of Move-it-to-improve-it (Mitii™), a multi-modal web-based program, in improving Executive Function (EF) in children with unilateral cerebral palsy (UCP). Method: Participants (n=102) were matched in pairs then randomised to: intervention (Mitii™ for 20 weeks; n=51; 26 males; mean age=11 years 8 months (SD=2y4m); Full Scale IQ=84.65 (SD=15.19); 28 left UCP; GMFCS-E&R (I=20, II=31) or waitlist control (n=50; 25 males; mean age=11y10m (SD=2y5m); Full Scale IQ=80.75 (SD=19.81); 20 left UCP; GMFCS-E&R (I=25, II=25). Mitii™ targeted working memory (WM), visual processing (VP), upper limb co-ordination and physical activity. EF capacity was assessed: attentional control (DSB; WISC-IV); cognitive flexibility (inhibition and number-letter sequencing DKEFS); goal setting (D-KEFs Tower Test); and information processing (WISC-IV Symbol Search and Coding). EF performance was assessed via parent report (BRIEF). Groups were compared at 20 weeks using linear regression (SPSS 21). Results: There were no significant between group differences in attentional control (DSB; p=0.20;CI=-0.40,1.87); cognitive flexibility (Inhibition, p=0.34;CI=-0.73,2.11; number/letter sequencing, p=0.17; CI=-0.55,2.94); problem solving (Tower; p=0.28; CI=-0.61,2.09), information processing (Symbol; p=0.08; CI=-0.16, 2.75; Coding; p=0.07; CI=-0.12,2.52) or EF performance (p=0.13; CI=-10.04,1.38). Conclusion: In a large RCT, Mitii TM did not lead to significant improvements on measures of EF or parent ratings of EF performance in children with UCP

Prem Baby Triple P: a randomised controlled trial of enhanced parenting capacity to improve developmental outcomes in preterm infants

Background Very preterm birth (gestation) is associated with motor, cognitive, behavioural and educational problems in children and maternal depression and withdrawal. Early interventions that target parenting have the greatest potential to create sustained effects on child development and parental psychopathology. Triple P (Positive Parenting Program) has shown positive effects on child behaviour and adjustment, parenting practices and family functioning. Baby Triple P for Preterm infants, has been developed to target parents of very preterm infants. This study tests the effectiveness of Baby Triple P for Preterm infants in improving child and parent/couple outcomes at 24 months corrected age (CA). Methods/Design Families will be randomised to receive either Baby Triple P for Preterm infants or Care as Usual (CAU). Baby Triple P for Preterm infants involves 4 × 2 hr group sessions at the hospital plus 4 × 30 min telephone consultations soon after transfer (42 weeks C.A.). After discharge participants will be linked to community based Triple P and intervention maintenance up to 24 months C.A. Assessments will be: baseline, post-intervention (6 weeks C.A.), at 12 and 24 months C.A. The primary outcome measure is the Infant Toddler Social & Emotional Assessment (ITSEA) at 24 months C.A. Child behavioural and emotional problems will be coded using the mother-toddler version of the Family Observation Schedule at 24 months C.A. Secondary outcome will be the Bayley Scales of Infant and Toddler Development (BSID III) cognitive development, language and motor abilities. Proximal targets of parenting style, parental self-efficacy, parental mental health, parental adjustment, parent-infant attachment, couple relationship satisfaction and couple communication will also be assessed. Our sample size based on the ITSEA, has 80% power, predicted effect size of 0.33 and an 85% retention rate, requires 165 families are required in each group (total sample of 330 families). Discussion This protocol presents the study design, methods and intervention to be analysed in a randomised trial of Baby Triple P for Preterm infants compared to Care as Usual (CAU) for families of very preterm infants. Publications of all outcomes will be published in peer reviewed journals according to CONSORT guidelines

A randomized trial of Baby Triple P for Preterm Infants: child outcomes at 2\ua0years of corrected age

To determine the efficacy of a hospital-based intervention that transitions into existing community support, in enhancing developmental outcomes at 2\ua0years of corrected age in infants born at less than 32\ua0weeks.In total, 323 families of 384 infants bor

Early Intervention for Children Aged 0 to 2 Years With or at High Risk of Cerebral Palsy International Clinical Practice Guideline Based on Systematic Reviews:International Clinical Practice Guideline Based on Systematic Reviews

IMPORTANCE: Cerebral palsy (CP) is the most common childhood physical disability. Early intervention for children younger than 2 years with or at risk of CP is critical. Now that an evidence-based guideline for early accurate diagnosis of CP exists, there is a need to summarize effective, CP-specific early intervention and conduct new trials that harness plasticity to improve function and increase participation. Our recommendations apply primarily to children at high risk of CP or with a diagnosis of CP, aged 0 to 2 years. OBJECTIVE: To systematically review the best available evidence about CP-specific early interventions across 9 domains promoting motor function, cognitive skills, communication, eating and drinking, vision, sleep, managing muscle tone, musculoskeletal health, and parental support. EVIDENCE REVIEW: The literature was systematically searched for the best available evidence for intervention for children aged 0 to 2 years at high risk of or with CP. Databases included CINAHL, Cochrane, Embase, MEDLINE, PsycInfo, and Scopus. Systematic reviews and randomized clinical trials (RCTs) were appraised by A Measurement Tool to Assess Systematic Reviews (AMSTAR) or Cochrane Risk of Bias tools. Recommendations were formed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) framework and reported according to the Appraisal of Guidelines, Research, and Evaluation (AGREE) II instrument. FINDINGS: Sixteen systematic reviews and 27 RCTs met inclusion criteria. Quality varied. Three best-practice principles were supported for the 9 domains: (1) immediate referral for intervention after a diagnosis of high risk of CP, (2) building parental capacity for attachment, and (3) parental goal-setting at the commencement of intervention. Twenty-eight recommendations (24 for and 4 against) specific to the 9 domains are supported with key evidence: motor function (4 recommendations), cognitive skills (2), communication (7), eating and drinking (2), vision (4), sleep (7), tone (1), musculoskeletal health (2), and parent support (5). CONCLUSIONS AND RELEVANCE: When a child meets the criteria of high risk of CP, intervention should start as soon as possible. Parents want an early diagnosis and treatment and support implementation as soon as possible. Early intervention builds on a critical developmental time for plasticity of developing systems. Referrals for intervention across the 9 domains should be specific as per recommendations in this guideline

Mindfulness and transformative parenting

With the recent explosion of interest in mindfulness has come an interest in the application of mindfulness to parenting. The current literature, reviewed in detail in this chapter, indicates that mindfulness is highly relevant to parents and that mindfulness-based interventions may improve antenatal and postnatal outcomes, decrease parental stress, improve parental well-being and foster better parent–child interactions to the benefit of both parents and children. Mindful parenting needs to be linked, at a theoretical level, to basic science and to wider theoretical frames and concepts. Within this chapter the links between mindful parenting, parental responsiveness and attachment theory as well as the links between mindful parenting, psychological flexibility and relational frame theory are explored. Mindful parenting offers us the opportunity to better understand the practice of relational or interpersonal mindfulness, as well as the practice of mindfulness within a diversity of embodied experiences, such as the interconnected embodiment of pregnancy. A rich diversity of mindful parenting practices, specifically tailored to the transformative possibilities within life as a committed parent, need to be fully developed and tested empirically. Parenting is a near-universal life experience with inbuilt transformative potential. Further, parenting has vast impacts upon the next generation. The promotion of mindful parenting is an ideal means to build a wiser, accepting, mindful and compassionate society

Parents of children with disabilities, mindfulness and acceptance: a review and a call for research

Recently, there has been a call for additional research on third-wave parenting interventions incorporating mindfulness and acceptance. A third-wave approach to parenting intervention may be particularly relevant to parents of children with disabilities. This paper provides a systematic review of the existing literature on third-wave parenting interventions for parents of children with disabilities, examining parental and/or child adjustment as an outcome. Four papers were identified and all studies were pre–post designs. The existing literature is promising; however, randomised controlled trials are needed. The importance of extending third-wave parenting interventions to parents of children with disabilities is discussed, and recommendations are made for future research

Implementation and Evaluation of the Parenting Program Stepping Stones Triple P for children with Autism Spectrum Disorders

This research project consisted of an evaluation of the parenting program Stepping Stones Triple P for the Autism Spectrum Disorders population as well as an investigation of the role that parental attributions play in determining treatment outcome. Whilst the Triple P Positive Parenting Program has a large evidence base (Sanders, 1999; Sanders, Markie-Dadds, Tully & Bor, 2000) and preliminary evidence indicates that Stepping Stones is also efficacious (Roberts, Mazzucchelli, Studman & Sanders, 2006), to date neither Stepping Stones nor Triple P have been evaluated with the ASD population. Although specific parenting programs have been used with the ASD population for a number of years (Koegel, Schreibman, Britten, Burke, & O'Neill, 1982) the experience of parents of children with ASD in standard Parenting Programs that are more widely disseminated has not been researched. Parental attributions refer to a parent's search for the meaning of their child's behaviour and the parent's use of attributed causal factors in framing their response to their child's behaviour (Bugental, New, Johnston, & Silvester, 1998). There is some evidence that parental attributions are associated with parenting styles (Dix, Ruble, Grusec, & Nixon, 1986; Smith & O'Leary, 1995), child behaviour (Roberts, & Hallbert-Rowe, 1992) and outcomes in child mental health treatment (Watson, 1986). Morrissey-Kane and Prinz (1999) developed the "beginnings" of a model of the relationship between parental attributions and parental engagement in child mental health treatment. They focus on three of the four dimensions of Weiner (1980), namely locus, stability and controllability. Initially, a pilot study was conducted that involved forty-two parents of children with ASD viewing a DVD showing Stepping Stones parenting strategies. Parents were asked to rate each strategy for acceptability, usability and their intention to try the strategy. Additionally, parental attributions and parental perceived control were explored as possible barriers to positive evaluations of the strategies. A focus group of parents was used to gather qualitative information. The results from the pilot study indicated that parent response to Stepping Stones was generally positive. In addition, it was found that parental attributions of child behaviour to uncontrollable factors predicted higher ratings of usability. The second study was a randomised controlled trial of Stepping Stones for the ASD population. Fifty-nine families participated in this trial and were randomly allocated to treatment and wait-list control groups. The results demonstrate significant improvements in child behaviour, parenting styles, parental satisfaction and conflict about parenting as well as a sleeper effect for parental efficacy. The treatment effect was maintained at follow-up six months later and for a third of participants the change in child behaviour or parenting styles was clinically significant. The third study focused on the role of parental attributions in determining treatment outcome. The fifty-nine families that participated in the trial also completed measures of parental attributions before and after completing Stepping Stones. A tendency for parents to generalise from ASD-related behaviour to misbehaviour was identified as well as the presence of the positivity effect for stability and controllability attributions but not for locus attributions. A relationship between parental autistic traits and internal parent-referent attributions for ASD-related behaviour and misbehaviour was demonstrated. Following participation in Stepping Stones parents were significantly less likely to believe that their child's misbehaviour was caused by factors intrinsic to their child and significantly more likely to believe that their child's ASD-related behaviour may change with time. Thus, Stepping Stones was found to alter parental attributions in a way that promotes parental engagement according to the model of Morrissey-Kane and Prinz (1999). Parental attributions before the intervention significantly predicted decreases in parental overreactivity and parental verbosity during treatment. The changes in parental overreactivity are consistent with the model of Morrissey-Kane and Prinz (1999), however, the changes in parental verbosity are not. It is suggested that the model needs to be expanded to include a greater variety of dysfunctional parenting styles, not merely over-reactivity. Overall, this research project has demonstrated that Stepping Stones Triple P is an effective intervention for behavioural problems and dysfunctional parenting within the ASD population. In addition, the evidence suggests that Stepping Stones Triple P can alter parental attributions such that the program is more likely to promote parental engagement