Experiences of children and adolescents with attention-deficit/hyperactivity disorder taking methylphenidate.

To improve clinical counselling for adolescents about the use of stimulant medication, it is crucial to understand the experiences of young people diagnosed with attention-deficit/hyperactivity disorder (ADHD) who are taking such treatment. For this narrative review, five databases were searched for studies investigating the personal experiences of control issues in adolescents diagnosed with ADHD taking methylphenidate. We extracted the data using NVivo 12 and interpretatively synthesized them according to the procedures of thematic analysis. Interviewed youngsters spontaneously put forward self-experiences about self-esteem and sense of control, although these issues were rarely explicitly addressed in the research question. The overarching theme in these studies was 'improving the self'. Two subthemes emerged: (1) medication sometimes delivered on its promise to improve the self, but regularly it did not; and (2) youngsters felt pressurized to conform to behavioural norms and comply with the medication use that adults had decided on. To genuinely involve youngsters diagnosed with ADHD for whom stimulant medication is prescribed in the shared decision-making process, we recommend to specifically involve them in a dialogue on the medication's potential effects on their self-experiences. This will allow them to feel at least partly in control of their body and life, and less pressurized to conform to others' norms.

Parents' multi-layered expectations when requesting an Autism Spectrum Disorder assessment of their young child: an in-depth interview study.

BACKGROUND: Parents are valued stakeholders in research, clinical practice and policy development concerning autism spectrum disorder (ASD). However, little is known about what drives and moves parents besides their obvious worries and help request when they ask for a diagnostic ASD assessment of their child. METHODS: Seventeen Flemish parents of 11 young children participated in a longitudinal study consisting of three in-depth interviews before and after their child's diagnostic ASD assessment. Data were analysed in Nvivo 11 according to the procedures of Interpretative Phenomenological Analysis. RESULTS: In this paper we report the results of the first series of interviews which were conducted after parents had asked for an ASD assessment of their young child, and before this assessment started. The pre-assessment experiences of the parents were dominated by the anticipation of various implications of an ASD diagnosis, comprising both positive and negative expectations. The theme of positive expectations consisted of two equally prominent subthemes: treatment-related implications but also expectations pertaining to their psychological and relational experiences. CONCLUSIONS: This study suggests important issues for clinicians to bear in mind during a consultation with parents who request an ASD assessment of their young child. We argue that attending to and communicating about parents' expectations prior to their child's ASD assessment may help clinicians to better understand parents' requests for help, and to address their needs more effectively.

Parents' views and experiences of the autism spectrum disorder diagnosis of their young child: a longitudinal interview study.

Parents are valuable stakeholders in research, clinical practice and policy development concerning autism spectrum disorder (ASD). Little is known, however, about how parents view and experience an ASD diagnosis. We investigated the evolution of parents' views and experiences of the ASD diagnosis before, right after and 12 months after their child was diagnosed. Seventeen Flemish parents waiting for their young child's diagnostic ASD assessment participated in a longitudinal study consisting of three in-depth interviews. They described their views and experiences concerning their child's ASD diagnosis at three separate moments: (T1) prior to a diagnostic ASD assessment; (T2) immediately after their final feedback session at the end of the assessment; and (T3) 12 months later. Interviews were digitally recorded, transcribed and analysed in Nvivo 11 according to the procedures of interpretative phenomenological analysis. We extracted three themes from the interview material throughout the parental journey: (T1) expecting certainty and exculpation; (T2) vulnerabilisation of the child; and (T3) pragmatic attitude and some disappointment. At T3, the parents overall had come to value the diagnosis because of two reasons: they were satisfied with their child's entitlement to ASD-related support at school, and with the diagnosis' impact on the child's relationships with parents and teachers. Many parents experienced their child with an ASD diagnosis as vulnerable, and themselves as acutely responsible for his development and future. Our findings may lead to a higher satisfaction with the clinical trajectory in both clinician and parents by inspiring a conversation between them about parents' evolving views, hopes and concerns related to their child's ASD diagnosis.

Delusional and psychotic disorders in juvenile myotonic dystrophy type-1.

We investigated the clinically derived hypothesis of a relatively high incidence of delusional and psychotic disorders in adolescents with juvenile Myotonic Dystrophy type-1 (DM1). Twenty-seven subjects of age 16-25 with juvenile DM1 and their parents were invited to have a clinical psychiatric interview, and to complete an ASEBA behavior checklist (YSR, ASR, CBCL, and ABCL). We diagnosed a Delusional Disorder in 19% of our patients and a Psychotic Disorder not otherwise specified in another 19%. These two groups of patients had a significantly worse level of clinically defined general functioning. It is clinically relevant to investigate in patients with juvenile DM the symptom of delusions and the presence of a delusional and psychotic disorder, and to consider the presence of juvenile DM in youngsters presenting with such a thought disorder. These disorders compromise the general functioning of the subjects and are often to some extent treatable. © 2017 Wiley Periodicals, Inc.

Physician View and Experience of the Diagnosis of Autism Spectrum Disorder in Young Children.

Introduction: Clinicians working with children with autism spectrum disorder (ASD) occupy an important position between parents and the wide-ranging research findings. However, it is not widely known how clinicians view and experience ASD in children, even though their perspective has been shown to significantly influence their work. Material and methods: Sixteen physicians working with preschool children without a diagnosis of (intellectual or other) disability with a (presumed) diagnosis of ASD participated in a semistructured interview. They described their professional views on ASD, and how they experienced its use in their clinical practice. The data were analyzed by applying the qualitative research method of interpretative phenomenological analysis of the data through Nvivo 11. Results: The main topic of the interviewed physicians' views and experiences of ASD in a young child comprised three inductively established themes: 1) physicians' views on ASD are multifaceted but fit within their personal clinical styles; 2) the ASD diagnosis is a "descriptive" part of a clinical trajectory; and 3) ASD treatment is a mix of "standard" approaches and a personalized search. These physicians' perspectives on ASD are composed of multiple and sometimes ambiguous facets. However, their views are embedded in their personal clinical styles in general (i.e., beyond ASD) and are experienced as clinically "workable." With the aim of finding an adequate approach to the problems parents bring to their office, many interviewed physicians say that-complementary to or rather than a classificatory diagnosis-they prefer using a personalized "profile" of a child in a therapeutic "process." Conclusions: The interviewed physicians consider doubts and concerns to be an inherent part of their clinical work with ASD in young children, but do not experience this ambiguity as an obstacle to clinical care. These physicians deal with the multiplicity of their views on ASD by basing their eclectic views on their generally adopted clinical styles, and by selecting what works for them, and for the parents and child, from what they regard as the 'textbook knowledge' on ASD. We discuss the implications of these findings for translating research results to the clinic.

Implications of an Autism Spectrum Disorder Diagnosis: An Interview Study of How Physicians Experience the Diagnosis in a Young Child.

Clinicians are significant translators and interpreters towards parents of the abundant literature on autism spectrum disorder (ASD). However, how clinicians experience and view ASD and an ASD diagnosis is not well known. Sixteen physicians working with young children with a (presumed) diagnosis of ASD participated in a semi-structured interview. They described their professional view on ASD and an ASD diagnosis, and how they experienced its use in their clinical practice. Interpretative phenomenological analysis of the data revealed two main topics about physicians' experiences: how they view ASD and an ASD diagnosis, and how they experience the implications of an ASD diagnosis. The latter topic comprised three themes: (1) the ASD diagnosis leads to a particular treatment trajectory and services; (2) ambivalence about how the ASD diagnosis impacts parents and child; and (3) psycho-relational functions of the ASD diagnosis. Physicians feel that some doubts and questions are inevitable when dealing clinically with ASD and an ASD diagnosis. They also perceive that there are certain risks associated with assigning the categorical ASD diagnosis to a young child. Altogether however, ASD is perceived by physicians as a useful and valuable diagnosis both because of treatment related consequences and of several psycho-relational implications.