A Qualitative Analysis of Contextual Factors Relevant to Suspected Late-Onset ADHD.

Objective: Recent studies suggest attention-deficit/hyperactivity disorder (ADHD) may emerge post-childhood. We integrate qualitative methods to systematically characterize contextual factors that may (a) delay identification of ADHD in childhood and (b) inform why ADHD symptoms emerge post-childhood. Method: Suspected late-onset ADHD cases from the local normative comparison group of the Multimodal Treatment Study of ADHD completed a qualitative interview (14 young adults and 7 caregivers). Interviews were qualitatively analyzed. Results: We identified five themes. Three themes may attenuate or delay identification of childhood ADHD: external factors (e.g., supportive adults), internal factors (e.g., strong intellectual functioning), and other factors (e.g., dismissive attitudes toward ADHD). Two themes may accompany an increase in ADHD symptoms post-childhood: external factors (e.g., increased external demands) and internal factors (e.g., perceived stress). Conclusion: Clinicians should probe these factors in suspected late-onset cases to address (a) whether, how, and to what extent ADHD was attenuated in childhood and (b) why symptoms emerge post-childhood.

More Than 500 Kids Could Be Saved Each Year! Ten Consensus Actions to Improve Quality of Pediatric Resuscitation in DACH-Countries (Austria, Germany, and Switzerland).

• Quality and outcome of pediatric resuscitation often does not achieve recommended goals. • Quality improvement initiatives with the aim of better survival rates and decreased morbidity of resuscitated children are urgently needed. • These initiatives should include an action framework for a comprehensive, fundamental, and interprofessional reorientation of clinical and organizational structures concerning resuscitation and post-resuscitation care of children. • The authors of this DACH position statement suggest the implementation of 10 evidence-based actions (for out-of-hospital and in-house cardiac arrests) that should improve survival rates and decrease morbidity of resuscitated children with better neurological outcome and quality of life.

Introduction: Just Say No? New Insights About Change Versus Constancy in Substance Use Behavioral Decisions in Youth With and Without ADHD.

Despite enormous social-psychological and economic consequences of substance abuse in youth and young adults, too little is known about effective interventions among substance users, both with and without ADHD. This special issue reports on four linked investigations that employed a novel research strategy when the Multimodal Treatment Children with ADHD Study (MTA) participants were between ages 21.7 and 27.3 years old (14-16 years after initial assessments). Using combination of in-depth qualitative narrative interviews and quantitative analyses ("mixed methods") of 183 participants from four to six original MTA sites, investigators sought to obtain a more complete understanding of factors contributing to youths' substance use (SU) initiation, maintenance, and desistence, (both among youth with ADHD and control participants). The articles in this special issue illuminate important new insights about possible influences contributing to SU, particularly persistent use/abuse. Findings also illustrate the benefits of mixed-methods studies, not only to better understand the linkages between ADHD and SU, but also to understand other areas of child/adult psychopathology.

Turning Points in the Lives of Youth of With/Without ADHD: Are They Linked to Changes in Substance Use?

OBJECTIVE: This study examines the behavior beliefs, social supports, and turning points in individuals with/without ADHD related to their substance use/abuse (SU/A) decisions. METHOD: The coded interviews from 60 participants with/without ADHD were compared for their SU/A decisions and precipitants with these decisions among abstainers, persisters, and desisters. RESULTS: ADHD participants reported fewer social advantages to avoid SU/A than non-ADHD participants. Desisters and persisters reported more social advantages of using drugs than abstainers. Persisters reported both more negative and positive psychological/physiological effects of SU/A. ADHD participants reported fewer positive role models in their lives. Non-ADHD patients reported more positive turning points than ADHD participants, regardless of SU/A status. CONCLUSION: ADHD individuals face challenges in making healthy decisions about SU/A due to lack of positive role models. Reinforcing accurate behavioral beliefs may be important to change behaviors in individuals with SU/A or to prevent SU/A initiation in ADHD individuals.

How Substance Users With ADHD Perceive the Relationship Between Substance Use and Emotional Functioning.

OBJECTIVE: Although substance use (SU) is elevated in ADHD and both are associated with disrupted emotional functioning, little is known about how emotions and SU interact in ADHD. We used a mixed qualitative-quantitative approach to explore this relationship. METHOD: Narrative comments were coded for 67 persistent (50 ADHD, 17 local normative comparison group [LNCG]) and 25 desistent (20 ADHD, 5 LNCG) substance users from the Multimodal Treatment Study of Children with ADHD (MTA) adult follow-up (21.7-26.7 years-old). RESULTS: SU persisters perceived SU positively affects emotional states and positive emotional effects outweigh negative effects. No ADHD group effects emerged. Qualitative analysis identified perceptions that cannabis enhanced positive mood for ADHD and LNCG SU persisters, and improved negative mood and ADHD for ADHD SU persisters. CONCLUSION: Perceptions about SU broadly and mood do not differentiate ADHD and non-ADHD SU persisters. However, perceptions that cannabis is therapeutic may inform ADHD-related risk for cannabis use.

Follow-Up of Young Adults With ADHD in the MTA: Design and Methods for Qualitative Interviews.

OBJECTIVE: Qualitative interviews with 183 young adults (YA) in the follow-up of the Multimodal Treatment Study of Children With and Without ADHD (MTA) provide rich information on beliefs and expectations regarding ADHD, life's turning points, medication use, and substance use (SU). METHOD: Participants from four MTA sites were sampled to include those with persistent and atypically high SU, and a local normative comparison group (LNCG). Respondents were encouraged to "tell their story" about their lives, using a semistructured conversational interview format. RESULTS: Interviews were reliably coded for interview topics. ADHD youth more often desisted from SU because of seeing others going down wrong paths due to SU. Narratives revealed very diverse accounts and explanations for SU-ADHD influences. CONCLUSION: Qualitative methods captured the perspectives of YAs regarding using substances. This information is essential for improving resilience models in drug prevention and treatment programs and for treatment development for this at-risk population.

The Qualitative Interview Study of Persistent and Nonpersistent Substance Use in the MTA: Sample Characteristics, Frequent Use, and Reasons for Use.

OBJECTIVE: To evaluate participants' perceptions about frequent use and reasons for substance use (SU) in the qualitative interview study, an add-on to the multimodal treatment study of ADHD (MTA). METHOD: Using the longitudinal MTA database, 39 ADHD cases and 19 peers with Persistent SU, and 86 ADHD cases and 39 peers without Persistent SU were identified and recruited. In adulthood, an open-ended interview was administered, and SU excerpts were indexed and classified to create subtopics (frequent use and reasons for use of alcohol, marijuana, and other drugs). RESULTS: For marijuana, the Persistent compared with Nonpersistent SU group had a significantly higher percentage of participants describing frequent use and giving reasons for use, and the ADHD group compared with the group of peers had a significantly higher percentage giving "stability" as a reason for use. CONCLUSION: Motivations for persistent marijuana use may differ for adults with and without a history of ADHD.

ADHD in context: Young adults' reports of the impact of occupational environment on the manifestation of ADHD.

Does changing context play a role in the decline in ADHD symptoms in adulthood? Insufficient research has explored the functioning of adults with ADHD. As adults, individuals with ADHD have significantly more latitude to control aspects of their day-to-day environments. Do the new contexts young adults find themselves in alter their experience of ADHD? Are there particular occupational or educational contexts in which young adults report functioning better than others? To examine this issue, we conducted semi-structured interviews at four North American sites in 2010-11 with 125 young adults, originally diagnosed with ADHD as children, regarding their work and post-secondary educational environments. Many subjects describe their symptoms as context-dependent. In some contexts, participants report feeling better able to focus; in others, their symptoms-such as high energy levels-become strengths rather than liabilities. Modal descriptions included tasks that were stressful and challenging, novel and required multitasking, busy and fast-paced, physically demanding or hands-on, and/or intrinsically interesting. Consistent with a developmental psychopathology framework, ADHD is experienced as arising from an interaction between our subjects and their environments. These findings demonstrate the need to account for the role of context in our understanding of ADHD as a psychiatric disorder, especially as it manifests in young adulthood.

Parenting a child with autism in India: narratives before and after a parent-child intervention program.

In many low and middle income countries where autism-related resources are scarce, interventions must rely on family and parents. A 3-month Parent-Child Training Program (PCTP) at Action For Autism, New Delhi, India is aimed at empowering and educating parents, encouraging acceptance of their child, and decreasing parent stress. Forty couples were asked to describe their child with autism using the Five Minute Speech Sample (FMSS), an open-ended narrative method, before and after the program. Parents described a wide range of child behaviors, primarily social and cognitive skills. While all families were of a relatively affluent strata compared to the general Indian population, there were nonetheless significant differences in parents' narratives based on their income levels. Coming into the program, parents with relatively less income focused on their child's immediate and material needs, while higher income parents discussed their parental roles and vision for society. After the PCTP, parents were more likely to reflect on their child beyond comparisons to 'normality,' and beyond the here-and-now. Mothers were more likely than fathers to reflect on themselves and their relationships with their child. Understanding parents' experiences and narratives is essential for the evaluation of interventions such as the PCTP, as Indian parents are incorporated into a growing global network of 'parents of children with autism.'

Practice to research: integrating evidence-based practices with culture and context.

There are ways to integrate culturally competent services (CCS) and evidence-based practices (EBP) which can improve the experiences of patients and their families and communities when faced with health problems, as well as the effectiveness and positive experiences of practitioners. CCS and EBP evidence should be jointly deployed for helping patients and clinicians. Partnership research models are useful for achieving the integration of CCS and EBP, since they involve close observation of and participation by clinicians and practitioners in the research process, and often use integrated qualitative and quantitative mixed methods. We illustrate this with 3 examples of work that can help integrate CCS and EBP: ongoing collection of information from patients, clinicians and staff, or "evidence farming"; close study and continuous improvement of activities and accommodations; and use of evidence of tacit, implicit cultural scripts and norms, such as being "productive," as well as explicit scripts. From a research practice point of view, collaborative partnerships will likely produce research with culture and context bracketed in, and will contribute stronger research models, methods, and units of analysis.

Adults with autism in India: a mixed-method approach to make meaning of daily routines.

Although individuals with Autism Spectrum Disorder (ASD) have been diagnosed in India for over fifty years, virtually nothing is known about the social circumstances of adults, their daily lives, and their families. Where are adults with autism? How do they spend their time? Who are they with, and what are they doing all day? A mixed-method approach was used to obtain information on daily routines of 54 adults with ASD living in New Delhi, India, and about parent levels of stress associated with these routines during a study collected from January through June, 2013. Whether or not they attended a structured setting during the day (59% did so), adults engaged in some 20 activities both inside and outside their home. Contrary to our expectations, most adults were not "hidden" and were out in public at least on occasion. Higher functioning adults were more likely to attend a structured setting, but parents described challenging behaviors, both adult and parent preference, and lack of options as reasons that adults stayed home. The amount of time adults spent outside their home was not associated with parent reported stress, but stress was significantly higher for mothers who were employed. Most families described adaptation to caring for their adult children. A partnership with an Indian nongovernmental organization provided mechanisms to amplify our research findings, making them meaningful to our participants and others.

Introduction to special section of the Journal of Family Psychology, advances in mixed methods in family psychology: integrative and applied solutions for family science.

Mixed methods in family psychology refer to the systematic integration of qualitative and quantitative techniques to represent family processes and settings. Over the past decade, significant advances have been made in study design, analytic strategies, and technological support (such as software) that allow for the integration of quantitative and qualitative methods and for making appropriate inferences from mixed methods. This special section of the Journal of Family Psychology illustrates how mixed methods may be used to advance knowledge in family science through identifying important cultural differences in family structure, beliefs, and practices, and revealing patterns of family relationships to generate new measurement paradigms and inform clinical practice. Guidance is offered to advance mixed methods research in family psychology through sound principles of peer review.

Parental perceptions of health-related quality of life in children with leukemia in the second week after the diagnosis: a quantitative model.

PURPOSE: The focus is on describing the child's health-related quality of life (HRQL) at the time of diagnosis as perceived by parents, by using an empirical model of their psychosocial context. PATIENTS AND METHODS: Patients were 128 leukemic children and their families recruited at the Haematology-Oncology Clinic of the Department of Pediatrics, University of Padova. The families were interviewed by a clinical psychologist during the first hospitalization of their children using the Ecocultural Family Interview-Cancer (EFI-C). This interview aimed at understanding the family daily routines as it relates to the child with cancer and the meaning and experience of the situation. Demographic data about children and their families also were collected. RESULTS: The EFI-C interviews were read for content and then coded; these items were grouped into 11 major dimensions, three dealing with the child in the hospital and eight concerning the family. An empirical model of path analysis was estimated to evaluate perceived child's HRQL at the second week from the diagnosis inside the psychosocial context. This model shows that perceived child's HRQL is predicted by parental trust in the medical staff, perceived child coping, and perceived child adaptability. These last two predictors are in turn moderated by the fixed factor child age and mediated by parenting. CONCLUSION: A better knowledge of parents' views and expectations regarding their children's HRQL during the first treatments for pediatric leukemia may facilitate the communication processes in the hospital and may help to provide improved psychosocial care for the child during the first treatments for leukemia.

Marketing therapeutic precision: Potential facilitators and barriers to adoption of n-of-1 trials.

BACKGROUND: N-of-1 trials may enhance therapeutic precision by predicting the long-term effectiveness of medical treatment on an individual basis. However, the n-of-1 approach has gained little traction with the clinical community. To learn why, we interviewed physicians and patients, focusing on the perceived benefits and drawbacks of n-of-1 trials and factors influencing these perceptions. METHODS: We convened focus groups and individual interviews with 21 physicians and 32 patients, most with chronic conditions. The study employed qualitative interview methods to explore and analyze subjects' views of n-of-1 trials. Analysis involved an iterative process of review and data abstraction after specific topics for coding, definitions of codes, and strategies for abstraction had been established. Previously defined domains and topics were then expanded and enriched, with key themes emerging during the analytic process. RESULTS: Physicians and patients remarked on 4 salient aspects of n-of-1 trials: scientific, relational, clinical, and logistical. Neither physicians nor patients were highly familiar with the n-of-1 concept, but both groups readily grasped the fundamental logic and appreciated the potential scientific benefits. Physicians saw n-of-1 trials as promoting an exciting but possibly threatening paradigm shift in the doctor-patient relationship, while patients viewed the relational consequences as modest. The best n-of-1 candidates were felt to be proactive, cognitively intact, reliable, motivated, and engaged in a trusting physician-patient relationship. CONCLUSIONS: Researchers interested in expanding the appeal of n-of-1 trials will need to address these concerns by carefully explaining the approach, emphasizing the benefits, and minimizing the effort required of doctors and patients.

Mexican American Adolescents' Family Caregiving: Selection Effects and Longitudinal Associations With Adjustment.

One hundred ten Mexican American adolescents (12 - 17 years) who provide infant care for their older sisters were studied to determine the effects of family caregiving responsibilities on adolescents' adjustment. Controlling for prior adjustment and family context factors, providing many hours of caregiving predicted an increase in youths' school absences and disciplinary problems. Frequent conflict surrounding caregiving was associated with increased stress and depression and lower school grades. Older girls appear to select into caregiving and experience the most problematic outcomes. Strong family obligations were not protective against caregiving stress but, rather, further compromised youths' well-being for those who were highly involved in their family's care.

Youths' Caretaking of Their Adolescent Sisters' Children: Results From Two Longitudinal Studies.

The extent and experiences of youths' caretaking of their adolescent sisters' children have been assessed in two longitudinal studies. The first study examines the caretaking patterns of 132 Latino and African American youth during middle and late adolescence. The second study involves 110 Latino youth whose teenage sister has recently given birth. Youth are studied at 6 weeks and 6 months postpartum. In both studies, girls provide more hours of care than boys, and in Study 1, girls' hours of care significantly increase with age whereas boys' hours of caretaking decrease. Girls provide more care when their sisters are older and when their mothers provide many hours of care, whereas boys provide less care when their mothers provide more care and when they have many siblings. Results of both studies reveal age, gender, and across-time differences in the extent of care, type of caretaking activities, and experiences in providing care.

Harnessing experience: exploring the gap between evidence-based medicine and clinical practice.

RATIONALE, AIMS AND OBJECTIVES: There is mounting evidence of a gap between Evidence-based Medicine (EBM) and physician clinical practice, in part because EBM is averaged global evidence gathered from exogenous populations which may not be relevant to local circumstances. Local endogenous evidence, collected in particular and 'real world' patient populations may be more relevant, convincing and timely for clinical practice. Evidence Farming (EF) is a concept to provide such local evidence through the systematic collection of clinical experience to guide more effective practice. METHODS: We report on the findings of a pilot study of 29 individual and three focus group (n = 10) interviews exploring physicians' evaluations how they use multiple sources of information in clinical decision making and their thoughts on EF. RESULTS: Physicians recognize a gap in translating EBM to practice. Physicians reported that when making clinical decisions, they more often rely on clinical experience, the opinions of colleagues and EBM summarizing electronic clinical resources rather than refer directly to EBM literature. Confidence in making decisions based on clinical experience increases over time, yet few physicians reported having systems for tracking their clinical experience in designing treatment plans and patient outcomes. Most physicians saw EF as a promising way to track experience, thereby making scientific evidence more relevant to their own clinical practices. CONCLUSION: Clinical experience is relatively neglected by the EBM movement, but if that experience were systematically gathered through an approach such as EF, it would meet a need left unfulfilled by EBM.

Mixing qualitative and quantitative research in developmental science: uses and methodological choices.

Multiple methods are vital to understanding development as a dynamic, transactional process. This article focuses on the ways in which quantitative and qualitative methodologies can be combined to enrich developmental science and the study of human development, focusing on the practical questions of "when" and "how." Research situations that may be especially suited to mixing qualitative and quantitative approaches are described. The authors also discuss potential choices for using mixed quantitative- qualitative approaches in study design, sampling, construction of measures or interview protocols, collaborations, and data analysis relevant to developmental science. Finally, they discuss some common pitfalls that occur in mixing these methods and include suggestions for surmounting them.

What ever happened to N-of-1 trials? Insiders' perspectives and a look to the future.

CONTEXT: When feasible, randomized, blinded single-patient (n-of-1) trials are uniquely capable of establishing the best treatment in an individual patient. Despite early enthusiasm, by the turn of the twenty-first century, few academic centers were conducting n-of-1 trials on a regular basis. METHODS: The authors reviewed the literature and conducted in-depth telephone interviews with leaders in the n-of-1 trial movement. FINDINGS: N-of-1 trials can improve care by increasing therapeutic precision. However, they have not been widely adopted, in part because physicians do not sufficiently value the reduction in uncertainty they yield weighed against the inconvenience they impose. Limited evidence suggests that patients may be receptive to n-of-1 trials once they understand the benefits. CONCLUSIONS: N-of-1 trials offer a unique opportunity to individualize clinical care and enrich clinical research. While ongoing changes in drug discovery, manufacture, and marketing may ultimately spur pharmaceutical makers and health care payers to support n-of-1 trials, at present the most promising resuscitation strategy is stripping n-of-1 trials to their essentials and marketing them directly to patients. In order to optimize statistical inference from these trials, empirical Bayes methods can be used to combine individual patient data with aggregate data from comparable patients.

Sociocultural studies of families of children with intellectual disabilities.

This article reviews recent sociocultural studies of families of children with intellectual disabilities to introduce the range of research conducted from this perspective and to highlight the methodological, conceptual, and theoretical contributions of this approach to the study of mental retardation. Sociocultural studies examine families within their cultural, historical, and sociopolitical contexts. This type of research is comparative across different cultural groups, but is not limited to such comparisons. Sociocultural studies use varied theories and methods, but they share a focus on families' coproduction of meanings and practices related to intellectual disability; families' responses and adaptations to disability; and how their understandings and experiences are shaped within larger social institutions and inequities. Sociocultural approaches take into account community contexts that matter to families with members with mental retardation or developmental delay, and they examine the broader systems that define and position individuals with disabilities and their families. As a whole, these studies provide a more experiential and holistic view of families' beliefs and adaptations within sociopolitical worlds, and offer new tools by which to study the families of children with developmental delays within and across different cultural groups.