Empowering Parents: The Use of the Parent as Researcher Paradigm in Early Intervention

Whilst family-focussed models of service delivery are proving more effective in early intervention, it is the parents who ultimately carry the burden of responsibility. They often evolve their own strategies for coping with difficulties and solving problems within a family context. Through case study analysis, I report on some of the key outcomes of early intervention for families of very young children with disabilities. The analysis challenges traditional definitions of the family and suggests a recontextualisation of this concept. Similarly parental perceptions of the style of early intervention services are contrasted with those models reported to be effective by professionals. In striving for optimal effectiveness in early intervention, the unique knowledge and understanding of parents is pivotal, and ways are suggested of objectively collecting and collating that knowledge to inform practice and identify important research questions. This case study analysis has led to the evolution of the parent as researcher paradigm, and the implications for the practical implementation of this model will be considered.     

Differential diagnosis of steroid-dependent nephrotic syndrome with psychosis: Practical and ethical issues

The present case illustrates practical and ethical issues that can be encountered by clinical psychologists providing consultation services in medical settings. The neuropsychological consultation service was asked to evaluate a 22-year-old male with psychosis, steroid-dependent nephrotic syndrome, and a family history of schizophrenia. MRI revealedmarked cortical atrophy. Clinical findings were consistent with (1) steroid inducedapparent atrophy, which has been shown to be reversible with withdrawal of steroids; (2) uremia secondary to steroid withdrawal; (3) cortical atrophy, found in some schizophrenics; or (4) an atypical, diffuse degenerative disorder. Clinical interview and psychological testing revealed significant thought disorder, prominent delusions, somatic hallucinations, and mood disturbance. Deterioration in social and academic functioning was also present. Except for impaired attention and concentration, neuropsychological evaluation showed no clear evidence of brain-based dysfunction. Further, neuropsychological results effectively ruled out a degenerative process and were not consistent with a steroid effects profile. A conclusive differential diagnosis of steroid induced psychosis versus severe psychopathology would require withdrawal from steroids and antipsychotics. In addition to the practical and ethical issues of withholding antipsychotics, steroid withdrawal would require either dialysis or renal transplant surgery. Decision making regarding dialysis dependency and the possibility of postsurgical psychosis secondary to true psychopathology were salient issues to both the patient and the treatment team.     

Configural and local processing of faces in children with Williams syndrome

Three experiments investigated face processing in children with Williams syndrome (WS). In Experiment 1, the ability to discriminate different aspects of faces was compared between WS subjects and a group of children individually matched for chronological age (CA-matches) and another group matched for mental age (MA-matches). In Experiments 2 and 3, the ability to process the local and configural aspects of geometrical patterns and faces was assessed within the same groups of subjects. The results indicated that the WSs' overall performance on face recognition was below that of the CA-matches, but similar to that of the MA-matches. This study revealed in addition that the CA- and MA-matches showed a bias toward a configural mode of face and geometrical shape processing, whereas children with WS did not show any bias. These findings suggest that face processing undergoes an abnormal developmental course in WS.     

Follow-up survey of pregnancies with diagnoses of chromosomal abnormality

A small clinical survey was undertaken at East Carolina University School of Medicine to examine the factors which influenced the decisions of five families to continue pregnancies after a chromosomal abnormality was detected. Little has been published concerning the psychosocial effects after continuing pregnancies in which the fetus was diagnosed with a chromosome abnormality by amniocentesis. In order to identify the factors that influenced their decisions, an interview with each couple was undertaken using a 25-part questionnaire. This paper addresses the method of interviewing, case material, and background concerning each couple and the summary of the results.     

FUNCTIONAL ANALYSIS AND INTERVENTION FOR BREATH HOLDING

We conducted a functional analysis of breath-holding episodes in a 7-year-old girl with severe mental retardation and Cornelia-de-Lange syndrome. The results showed that breath holding served an operant function, primarily to gain access to attention. The intervention, consisting of extinction, scheduled attention, and use of a picture card communication system, resulted in decreased breath holding.     

Patients with chronic fatigue syndrome do not score higher on the autism‐spectrum quotient than healthy controls: Comparison with autism spectrum disorder

Clinically, there is an overlap of several symptoms of chronic fatigue syndrome (CFS ) and autism spectrum disorder (ASD ), including fatigue; brain “fog”; cognitive impairments; increased sensitivity to sound, light, and odour; increased pain and tenderness; and impaired emotional contact. Adults with CFS (n = 59) or ASD (n = 50) and healthy controls (HC ; n = 53) were assessed with the Autism‐Spectrum Quotient (AQ ) in a cross‐sectional study. Non‐parametric analysis was used to compare AQ scores among the groups. Univariate analysis of variance (ANCOVA ) was used to identify if age, sex, or diagnostic group influenced the differences in scores. Patients with ASD scored significantly higher on the AQ than the CFS group and the HC group. No differences in AQ scores were found between the CFS and HC groups. AQ results were influenced by the diagnostic group but not by age or sex, according to ANCOVA . Despite clinical observations of symptom overlap between ASD and CFS , adult patients with CFS report few autistic traits in the self‐report instrument, the AQ . The choice of instrument to assess autistic traits may influence the results.     

The Psychological Burden Inflicted By Multiple Cancers in Li-Fraumeni Families: Five Case Studies

To gain insight into the psychological, emotional, relational, and family problems of families afflicted by Li-Fraumeni syndrome, we interviewed members of five such families in the Pediatric Oncology Department, Gustave Roussy Institute, where at least one member of the family had been treated. These interviews showed that families were psychologically fragile, that their interactions and thinking patterns were related to a family background plagued by the repeated occurrence of cancer, and was often marked by physical or psychological violence. They had complex imaginary etiologic explanations, and showed an ambivalent willingness to learn about cancer and the risks involved. They expressed their fear of transmitting doom and death, posed questions about whether their parents would have had them had they known the test result, and about what their own attitude would be toward childbearing. Thus genetic testing awoke disconcerting and unsolved questions for them. These first results can contribute to the design of supportive interventions and future clinical research.