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  • Caregiver Treatment Preferences for Children with Attention Deficit/Hyperactivity Disorder
    UMB Dataset

    Alternate Title(s)
    Caregiver Treatment Preferences for Children with ADHD
    Authors
    Susan dosReis
    Description

    This dataset is the result of an investigation of caregivers’ management and treatment preferences for their ADHD child. From January 2013 through March 2015 a total of 184 caregivers of children 4 to 14 years of age were recruited from primary care, pediatric outpatient clinics, and support organizations in Maryland. The study explored caregiver variability and priorities when considering medication, change in management options over time, and preference for different treatment attributes. Data were collected using Best-Worst scaling and the Vanderbilt ADHD Diagnostic Parent Rating Scale (VADPRS). This dataset consists of caregiver and child demographic information, child diagnoses and treatment characteristics data, and caregiver preferences with regard to medication and observed and desired improvements in their child’s ADHD.

    Subject
    Attention Deficit Disorder with Hyperactivity
    Caregivers
    Geographic Coverage
    Maryland
  • Engaging Caregivers in the Treatment of Youth with Complex Developmental and Mental Health Needs
    UMB Dataset

    Authors
    Susan dosReis
    Ahrang Yoo
    Monique Kim
    Melissa M. Ross
    2 more author(s)...
    Description

    This qualitative inquiry investigated caregivers’ experiences with care management services for their child diagnosed with both cognitive and mental health needs. Study eligibility requirements included caring for a child 26 years of age or younger at enrollment, with an intellectual or cognitive developmental disability, and who also had a mental health condition. A total of 37 caregivers participated, 6 of whom were selected for in-depth interviews with the remaining 31 distributed among 5 focus groups. All sessions were recorded and subsequently transcribed verbatim. Data includes family demographics, child characteristics (e.g. school grade level, diagnoses, treatment, behavioral problems, etc.), and the factors promoting family engagement in care management

    Subject
    Caregivers
    Comorbidity
    Decision Making
    Developmental Disabilities
    Geographic Coverage
    Maryland
    Timeframe
    2014
  • Best-Worst Scaling to Prioritize Outcomes Meaningful to Caregivers of Youth with Mental Health Multimorbidities: A Pilot Study
    UMB Dataset

    Authors
    Susan dosReis
    Wendy Castillo Camelo
    Melissa M. Ross
    Saad Tariq
    Description

    This pilot study tested the use of a best-worst scaling (BWS) instrument to aid caregivers of a child with mental health comorbidities in clarifying preferences for treatment outcomes. BWS methodology closely approximates real-life decision-making by requiring the selection of one “most important” and one “least important” among a group of competing attributes. 38 caregivers were recruited from support groups in Maryland from March through July of 2015. Criteria for participation were a) their child was 21 years or younger, b) was diagnosed with a developmental delay related to cognitive or emotional disability and, c) with a comorbid mental illness (i.e. ADHD, depression, anxiety, etc.). Subsequent to survey completion, the caregivers took part in one of 6 debriefing sessions to determine the ease of comprehension, relevance of the concepts, distinctiveness of the statements, and clarity of language. The dataset includes family demographics, child characteristics (diagnoses, type of treatment, etc.), session transcripts, and statistics associated with the caregiver responses to the attributes included in the BWS instrument.

    Subject
    Caregivers
    Comorbidity
    Decision Making
    Developmental Disabilities
    Geographic Coverage
    Maryland
    Timeframe
    2015
  • Attribute Development Using Continuous Stakeholder Engagemement to Prioritize Treatment Decisions: A Framework for Patient-Centered Research
    UMB Dataset

    Authors
    Susan dosReis
    Wendy Castillo Camelo
    Melissa M. Ross
    Marcy Fitz-Randolph
    2 more author(s)...
    Description

    This study investigated a systematic process for using qualitative data to identify attributes and levels most important to caregivers in making health care treatment decisions. Grounded theory methodology was selected for its suitability in assessing an individual’s response to a specific experience. Stakeholder advisors worked with academic researchers in all phases of the project. A total of 48 caregivers were recruited from community support groups from across Maryland. Criteria for selection were a) responsibility for a child 26 years or younger, b) who had an intellectual, emotional, or social developmental disability and, c) with a concomitant mental health condition. 6 caregivers participated in in–depth interviews while the remaining 42 were distributed among 6 focus groups. This dataset includes family demographics, child characteristics (e.g. school grade level, diagnoses, treatment, behavioral problems, etc.), interview transcripts, focus group data, and attribute descriptions and levels.

    Subject
    Caregivers
    Comorbidity
    Decision Making
    Developmental Disabilities
    Geographic Coverage
    Maryland
  • The Meaning of Attention-Deficit/Hyperactivity Disorder Medication and Parents' Initiation and Continuity of Treatment for Their Child
    UMB Dataset

    Authors
    Susan dosReis
    Matthew P. Mychailyszyn
    Sara E. Evans-Lacko
    Alicia Beltran
    2 more author(s)...
    Description

    This study investigated the relationship between caregivers’ early views of ADHD treatment and the decision to initiate and continue medication for their child. 48 caregivers of newly diagnosed children participated in qualitative, semistructured telephone interviews with 6 and 12 month follow-ups. Analysis of the initial interview responses revealed 4 categories associated with caregiver perspectives: a) illness oriented, b) problem oriented, c) generally acceptable and, d) unacceptable. This dataset includes demographic information, family history of psychiatric illness, comorbid diagnoses, use of medication, and transcripts of initial, 6 month, and 12 month follow-up interviews.

    Subject
    Attention Deficit Disorder with Hyperactivity
    Caregivers
    Psychotropic Drugs
    Geographic Coverage
    Maryland
  • Attitudes About Stimulant Medication for Attention-Deficit/Hyperactivity Disorder Among African American Families in an Inner City
    UMB Dataset

    Authors
    Susan dosReis
    Arlene Butz
    Paul H. Lipkin
    Julia S. Anixt
    2 more author(s)...
    Description

    This dataset consists of survey responses from 57 African American parents/caregivers whose child was receiving care for ADHD in a university-affiliated pediatric primary care unit. The 47 item questionnaire entitled Attitudes, Satisfaction, Knowledge, and Medication Experiences (ASK-ME) was developed by the primary author to assess views of stimulant medication for ADHD. In addition to demographic information, the dataset includes treatment characteristics, whether or not the child received counseling, and responses to 7 items specifically related to attitude toward medication. A copy of the survey is available from Dr. Susan dosReis upon request.

    Subject
    Attention Deficit Disorder with Hyperactivity
    Caregivers
    Psychotropic Drugs
    Geographic Coverage
    Baltimore (Md.)
  • Stigmatizing Experiences of Parents of Children with a New Diagnosis of ADHD
    UMB Dataset

    Authors
    Susan dosReis
    Crystal L. Barksdale
    Andrea Sherman
    Kate Maloney
    1 more author(s)...
    Description

    This dataset is the result of continued analysis of data collected from qualified, semistructured telephone interviews of 48 caregivers of newly diagnosed children. The initial evaluation of interview results focused on their early views of ADHD treatment and the decision to initiate and continue medication for their child (see “Related Datasets” below”). This study concentrated on how caregivers and their children experience mental health stigma. Responses were classified into 6 categories: a) concerns with labeling, b) feelings of social isolation and rejection, c) perceptions of a dismissive society, d) influence of negative public views, e) exposure to negative media and, f) mistrust of medical assessments. The dataset includes demographic, family history of psychiatric illness, comorbid diagnoses, characteristics associated with stigmatizing experiences, and transcripts of initial, 6, and 12 month follow-up interviews.

    Subject
    Attention Deficit Disorder with Hyperactivity
    Caregivers
    Psychotropic Drugs
    Social Stigma
    Geographic Coverage
    Maryland
  • Parental Perceptions and Satisfaction with Stimulant Medication for Attention-Deficit Hyperactivity Disorder
    UMB Dataset

    Authors
    Susan dosReis
    Julie Magno Zito
    Daniel J. Safer
    Karen L. Soeken
    2 more author(s)...
    Description

    247 caregivers of a child diagnosed with ADHD completed a survey to assess their attitude and level of satisfaction with their child’s stimulant treatment. The participants were recruited from six pediatric facilities associated with a large health maintenance organization (HMO). Eligibility requirements included: a) the child was under 20 years of age, b) had taken ADHD medication within the last 12 months and, c) the primary caregiver knew the type of stimulant prescribed. The 47 item self-administered Attitudes, Satisfaction, Knowledge, and Medication Experiences (ASK-ME) survey is comprised of 5 sections: medication treatment characteristics, knowledge assessment, attitude and satisfaction scales, and demographic characteristics.

    Subject
    Attention Deficit Disorder with Hyperactivity
    Caregivers
    Psychotropic Drugs
    Geographic Coverage
    Virginia