It's not a bed of roses, but we try to make the best of every day. We're dealing with issues that most people haven't got a clue about, and it's intrusive when you get someone coming up to you and saying, he needs a clip round the ear when one of them has a tantrum. If Amanda, Claire and Jane could ask the rest of us to do just one thing, it would be to stop staring. It doesn't give you the right to gawp," says Claire. Beyond staring, what angers Amanda is when strangers ask about Elizabeth.
And I say, nothing's wrong with her. She's fine. Claire agrees: it's not a tragedy, she says, that her child has a disability. I hate people calling me 'special' or thinking I somehow have extra qualities that enable me to deal with all this. Calling us 'special' or alluding to our great qualities makes us different, sets us apart, and we don't want that at all. What is also irksome to many parents is when other people take it on themselves to reassure them that all will be well. The people you value most are those who just treat you as they would any other family.
I love it when people meet us and they try to engage with Roberta, just as they would any other child; that's so good. What I don't need is sympathy; I'm hugely proud of my little girl and all she's achieved. She and her baby brother are the centre of my world and the idea that people feel sorry for me is just so misplaced. There are around , disabled children in the UK and, says Justine Roberts, their families deserve better.
There's a myth that some disorders, such as autism and ADHD, are a fashionable excuse for bad behaviour and bad parenting. Another myth, says Justine, is that language around disability doesn't matter. We've learned how hurtful it is to families where there are disabilities, and now we clamp down on it on the site — and we'd like others to do the same.
First Steps After a Diagnosis
It really is important. Project : Children with health care needs and their families benefit from the volunteers in the M. Project provides support and promotes awareness. Office of Disability Employment Policy : The United States Department of Labor offers many different disability employment policy resources that are categorized by topic.
Department of Education : The U. Department of Education provides many resources and research for parents of children with special needs. Ability Path : Ability Path and Temple Grandin offer teaching tips for children and adults with autism spectrum disorder.
Navigate Life Texas: Resources for kids with disabilities and special needs
Autism Web : Autism Web gives parents and teachers tips for autism. Help Guide : Help Guide offers advice for helping children with learning disabilities at home and at school. Autism and Oughtisms : The mom of 2 autistic boys is the author of this inspirational and informative blog about autism. Love that Max : A magazine editor mom of a special needs child writes this inspirational blog about parenting a special needs child.
My Special Needs Network : Learning solutions for kids with special needs can be found on this blog. The Shut-Down Learner : Dr. Richard Selznick offers information and practical advice to parents of special needs children. Studies selected for this review needed to meet the following inclusion criteria:. The study needed to be an RCT using parent training interventions for parents with children diagnosed with neurodevelopmental disabilities.
The parenting skills needed to parent a young child will differ from those needed to parent a preadolescent. Preadolescence is generally defined as the period between 10 and 13 years of age.
The study needed to state the means, standard deviations and sample sizes in the publication or in response to a request made to the corresponding author of the publication. Relevant studies were obtained using various strategies; an example of the search strategy used can be found in the Appendix. Two authors, Ameer Hohlfeld A. An updated search was conducted in August Using unlimited truncation characters for each database, we used the following search strategy after determining key medical subject heading terms for each of the inclusion criteria.
We supplemented the above searches with a manual search of Google Scholar and other grey literature sites. In addition, we searched reference lists of included studies to identify any missing articles, abstracts and conference proceedings, which we then requested from the authors.
After reading the titles and abstracts of the identified studies, we retrieved the full-text studies for every citation potentially meeting inclusion criteria. Both A. Information extracted from the studies included country in which the study was conducted, study design, sample size, child diagnosis, mean age of the child in years and standard deviation, target parent participating in the intervention, name of the parenting intervention programme, coach or trainer administering the intervention and the tool used to measure PSE.
We extracted means, standard deviations and sample sizes for each relevant intervention group measuring PSE for the analysis. Only the baseline scores and first recorded post-intervention PSE scores were extracted. Where possible we only extracted PSE scores from studies using standardised interventions if the study also tested modified or enhanced versions of the interventions. Data were analysed using Review Manager 5. The outcomes PSE, parenting competence, parenting confidence were considered as continuous variables.
In addition, meta-analyses were performed on each of the subgroups. Where significant heterogeneity was found, the random-effects model was used. For the self-efficacy tools such as the PSOC and the Parenting Tasks Checklist, PTC that summed separate subscale scores into a total score, only the efficacy subscale scores were extracted. Where these subscale scores were not provided, we used the total score for the scale. Where studies evaluated more than one format of the intervention, we extracted data from the standard interventions and not the adapted formats. We individually inspected specific components in each included study for risk of bias: selection of participants for each study, sequence generation and randomisation, allocation concealment, blinding, incomplete outcome data or missing data attrition bias , selective outcome reporting and other sources of bias.
In the event of a disagreement between A. Ethics approval is not required for this study, given that systematic reviews draw on secondary publicly available data from published studies. We obtained titles and abstracts from electronic databases and trial registries. An additional 53 references were found through manually searching the reference lists of included studies.
For two of these the full-text version could not be accessed and the authors were thus contacted.
Helping Parents Deal with the Fact That Their Child Has a Disability
Therefore, a total of studies were retrieved and, once duplicate studies were removed, studies remained. A further articles were excluded based on examination of title and abstracts, after which articles were potentially eligible for inclusion, pending full-text assessment. A native French speaker translated a French language article. Finally, 25 articles met our inclusion criteria, of which 3 studies were not published. Figure 2 depicts a flow diagram of the literature search results.
Table 1 summarises the characteristics of the included studies. There were families who participated in the studies; the sample sizes ranged from 11 to The remainder consisted of non-specific developmental disorders 3 studies and cerebral palsy 1 study. Characteristics of randomised controlled trials conducted globally meeting inclusion criteria. Seven studies specifically recorded PSE scores of mothers; of these, six studies directed their interventions solely at mothers.
The remaining 18 studies did not specify who received the intervention and they reported combined PSE scores, without stratifying the outcomes for mothers and fathers. Parent training programmes were not standardised across studies.
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The remaining six studies trialled less commonly known interventions. Twenty-three studies had copyright or trademark licences for the interventions employed in the study. These professionals included nurses, special education teachers and allied health professionals such as speech and language therapists, occupational therapists and social workers.
Table 2 displays the summative results including those from the subgroup analyses. Random effects meta-analysis of the summative effects of parent training programmes on parental self-efficacy levels. Studies were stratified according to the mean ages of children in each study Figure 4. Random effects meta-analysis of the summative effects of parent training programmes according to child age. Studies were stratified according to whether they incorporated copyright or trademark interventions compared to non-licenced interventions Figure 5.
Random effects meta-analysis of the summative effects of parent training programmes according to programme type. We considered whether studies implemented by healthcare practitioners other than psychologists showed variability in the effectiveness of the PSE outcomes compared to those that were facilitated by psychologists Figure 6.
Random effects meta-analysis of the summative effects of parent training programmes according to professional delivering the intervention. We used moderator analyses to assess the percentage of variability in the effect sizes across the parent training programmes for PSE in each subgroup analysis that was present. Removing the study by Whittingham et al. Removing this study from the analysis meant that the remaining parents were a more homogenous group. A graphical representation of the risk of bias assessments is presented in Figure 7.
Components assessing bias included blinding, allocation, incomplete outcome data, selective reporting and other potential sources of bias. The components were rated as being adequate, inadequate or unclear Higgins The majority of the studies provided limited information regarding aspects of selection [specifically allocation concealment and sequence generation randomisation ].
All of the included studies had a control group that consisted of no treatment or treatment as usual; therefore, blinding of participants to group allocation was not possible. Consequently, blinding of participants and personnel was the aspect that carried the highest risk of bias in the studies included in this review.
Isolation of Parents of Kids With Disabilities | The Mighty
This systematic review found evidence for parent training programmes being effective in enhancing parental PSE levels. This finding was statistically significant and thus we are able to conclude that PSE is a robust parent outcome measure to evaluate the effectiveness of parenting programmes. Thus, data suggest that training parents of younger children are more beneficial in improving PSE outcomes than training initiated after the child is 5 years of age.
The authors think that this may be because the skills taught to parents of younger children are based on developmental principles and consequently have a more direct impact on the developmental outcomes of children than skills taught to older parents. Parents who can see the positive impact that their newly acquired skill has on child outcomes would potentially be more likely to increase their belief PSE that they are able to provide the support that their child needs. Parent training programmes were shown to be effective irrespective of whether they were administered by psychologists or other healthcare professionals.
This finding may be of particular relevance in certain developing country contexts that do not have well-established professional training programmes for medical and allied health professionals and consequently may graduate a limited number of healthcare professionals on an annual basis. Task shifting has been suggested as a way to maximise access to interventions in contexts where there is a scarcity of trained professionals Flisher et al.
In addition, there is an emerging body of evidence to suggest that alternative cadre professionals, such as rehabilitation care workers or community-based carers, are also able to effectively deliver parent training programmes Flisher et al. Finally, we wish to discuss the substantial amount of heterogeneity for the primary outcome measure. We employed the random-effects model throughout the analyses to account for this; however, in this meta-analysis, heterogeneity was particularly affected by one study.
When removing the study by Whittingham et al.
Heterogeneity in this study may also have been attributable to the high risk of performance and detection bias present in this study. Areas of bias that were underreported included performance bias, detection and attrition bias, including allocation concealment. Authors should pay attention to how they report participant selection and randomisation procedures, as well as how they report incomplete outcome data.