Research

Original Investigation

Improving Maternal Mental Health After a Child’s Diagnosis of Autism Spectrum Disorder Results From a Randomized Clinical Trial Emily Feinberg, CPNP, ScD; Marilyn Augustyn, MD; Elaine Fitzgerald, DrPH; Jenna Sandler, MPH; Zhandra Ferreira-Cesar Suarez, MPH; Ning Chen, MSc; Howard Cabral, PhD; William Beardslee, MD; Michael Silverstein, MD, MPH

IMPORTANCE The prevalence of psychological distress among mothers of children with

autism spectrum disorder (ASD) suggests a need for interventions that address parental mental health during the critical period after the child’s autism diagnosis when parents are learning to navigate the complex system of autism services. OBJECTIVE To investigate whether a brief cognitive behavioral intervention, problem-solving education (PSE), decreases parenting stress and maternal depressive symptoms during the period immediately following a child’s diagnosis of ASD. DESIGN, SETTING, AND PARTICIPANTS A randomized clinical trial compared 6 sessions of PSE with usual care. Settings included an autism clinic and 6 community-based early intervention programs that primarily serve low-income families. Participants were mothers of 122 young children (mean age, 34 months) who recently received a diagnosis of ASD. Among mothers assessed for eligibility, 17.0% declined participation. We report outcomes after 3 months of follow-up (immediate postdiagnosis period). INTERVENTIONS Problem-solving education is a brief, cognitive intervention delivered in six

30-minute individualized sessions by existing staff (early intervention programs) or research staff without formal mental health training (autism clinic). MAIN OUTCOMES AND MEASURES Primary outcomes were parental stress and maternal

depressive symptoms. RESULTS Fifty-nine mothers were randomized to receive PSE and 63 to receive usual care. The follow-up rate was 91.0%. Most intervention mothers (78.0%) received the full PSE course. At the 3-month follow-up assessment, PSE mothers were significantly less likely than those serving as controls to have clinically significant parental stress (3.8% vs 29.3%; adjusted relative risk [aRR], 0.17; 95% CI, 0.04 to 0.65). For depressive symptoms, the risk reduction in clinically significant symptoms did not reach statistical significance (5.7% vs 22.4%; aRR, 0.33; 95% CI, 0.10 to 1.08); however, the reduction in mean depressive symptoms was statistically significant (Quick Inventory of Depressive Symptomatology score, 4.6 with PSE vs 6.9 with usual care; adjusted mean difference, −1.67; 95% CI, −3.17 to −0.18). CONCLUSIONS AND RELEVANCE The positive effects of PSE in reducing parenting stress and depressive symptoms during the critical postdiagnosis period, when parents are asked to navigate a complex service delivery system, suggest that it may have a place in clinical practice. Further work will monitor these families for a total of 9 months to determine the trajectory of outcomes. TRIAL REGISTRATION clinicaltrials.gov Identifier: NCT01021384

JAMA Pediatr. doi:10.1001/jamapediatrics.2013.3445 Published online November 11, 2013.

Author Affiliations: Author affiliations are listed at the end of this article. Corresponding Author: Emily Feinberg, CPNP, ScD, Department of Community Health Sciences, Boston University School of Public Health, Crosstown Center, Room 440, 801 Massachusetts Ave, Boston, Massachusetts 02118 (emfeinbe @bu.edu).

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Research Original Investigation

Maternal Mental Health With Child’s Autism

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others of children with an autism spectrum disorder (ASD) consistently report high levels of psychological distress, including parental stress, depressive symptoms, and social isolation.1-5 Almost 40% of such mothers report levels of clinically significant parenting stress,3 and between 33% and 59% report depressive symptoms warranting psychiatric evaluation.1,2 The decreased energy, concentration, and lack of motivation associated with depressive symptoms adversely affect maternal functioning as well as a mother’s capacity to manage the health needs of her children.6-9 The most effective interventions for young children with ASD are highly demanding, time intensive, and actively involve parents as “adjunct therapists.”10,11 The prevalence of psychological distress among mothers of children with ASD suggests a need for interventions that specifically address parental mental health during this critical period. To date, most intervention approaches for young children with ASD focus on training parents in behavioral techniques and methods to facilitate joint attention and communication skills.12-17 These strategies, however, fail to deliberately address the types of psychological distress most often reported by parents.12 Therefore, we conducted a randomized clinical trial of problem-solving education (PSE), a brief cognitive behavioral intervention, targeted to mothers of young children who recently received a diagnosis of ASD. We hypothesized that strengthening maternal problem-solving skills would serve as a buffer against the negative impact of life stressors and thereby reduce parental stress and attenuate depressive symptoms. This analysis reports outcomes after 3 months of follow-up in a newly diagnosed, largely low-income sample. We plan to monitor these families for 9 months but elected to present 3-month outcomes independently because they measure the intervention effect during the critical period following the child’s autism diagnosis. Because parents are learning to navigate the complex world of autism services during the immediate postdiagnosis period, intervention effects during this time have implications for clinical practice even if such findings are not sustained.

Methods Participants and Settings Between November 12, 2009, and August 16, 2012, we enrolled 122 English- or Spanish-speaking mothers with a child younger than 6 years who had recently received a diagnosis of an ASD. We aimed to enroll 140 participants, which was the sample size needed to detect a 25% change in the proportion of mothers reporting clinically significant parenting stress and a clinically relevant 3-point change in depressive symptoms. The ASD diagnosis was made by a qualified licensed health care provider, most often (92%) using the Autism Diagnostic Observation Schedule.18 Participants were recruited from an autism clinic that serves ethnically diverse, primarily lowincome urban families and from 6 Boston area early intervention (EI) programs for children from birth to 3 years that provide services authorized under Part C of the Individuals with Disability Act. E2

Figure. Flow of Participants Through the Study 165 Families referred to the study 45 Excluded 28 Refused to participate 17 Did not meet inclusion criteria 122 Randomized

63 Allocated to usual care 63 Received control care

3 Lost to follow-up 1 Withdrew from study 2 Unable to be contacted

61 Included in analysis 2 Excluded from analysis Postrandomization exclusions for not meeting study eligibility criteria 1 No autism diagnosis 1 Child > 6 y

59 Allocated to PSE 55 Received intervention as assigned

6 Lost to follow-up 5 Withdrew from study 1 Unable to be contacted 46 Received full 6-session intervention 9 Received incomplete intervention (2-5 sessions) 4 Received no intervention

59 Included in analysis 0 Excluded from analysis

Procedure Families of children with newly diagnosed ASD were introduced to the study by clinicians from the autism clinic or EI providers who had existing relationships with the families. Study personnel then contacted interested families by telephone to screen for eligibility and arrange face-to-face meetings to explain the study and obtain informed consent. Randomization procedures and requirement of participation in the treatment and control groups were explained during this faceto-face meeting. Participants’ understanding of study conditions and capacity to give informed consent were assessed using the MacArthur Competence Assessment Tool for Clinical Research.19 A total of 165 mothers were referred to the study and screened for eligibility; 122 were assigned to a study arm (Figure). Mothers were randomly allocated to intervention (PSE) or usual care after completion of baseline measures with a 1:1 allocation within strata based on high and low depressive symptoms. This random allocation sequence was created by the study statistician (H.C.) using a computer-generated random number sequence. Randomization occurred independently at each study site. Within strata, randomization was conducted within blocks of 4. The allocation sequence was concealed from all study personnel in sequentially numbered opaque, sealed envelopes.

Intervention Conditions Problem-Solving Education The intervention group received PSE, a manualized cognitive behavioral intervention adapted from problem-solving treatment, itself an evidence-based depression treatment.20 The

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Maternal Mental Health With Child’s Autism

adapted intervention was designed such that it could be delivered by the range of existing multidisciplinary staff who work with families of young children with ASD. Details of the adaptation process have been described previously.21,22 During each workbook-based PSE session, mothers work one-onone with a trained interventionist to identify a single, measurable problem and then proceed through a series of steps that involve goal setting, brainstorming, and evaluating solutions, choosing a solution, and action planning. For example, a mother might describe feeling lonely. In the PSE session, she would work with the interventionist to change this subjective feeling into an objective problem, such as not being able to find someone to watch her child so that she could go out with friends. Working through the defined steps, the mother sets an achievable goal, generates solutions to meet it, and plans specific steps to fulfill her solution. In this example, the mother might decide that she would ask her sister to watch her child after he goes to bed to avoid his challenging behaviors and plans to call her sister the next day. A full PSE course involved 6 individual sessions (30-45 minutes). It was delivered in the home or other location of the mother’s choosing. In EI, PSE was fully integrated into the existing service delivery system. For children who were not receiving EI, PSE was delivered as a supplement to school-based services. Usual Care Usual care group mothers received the services specified in the child’s Individualized Family Service Plan or Individualized Educational Plan. Typically, such plans include a package of services, including speech and language therapy, occupational therapy, and social skills training. Neither specifically includes parent-focused mental health services. Interventionists and Interventionist Training and Supervision Ten EI staff representing the range of disciplines within EI programs (child development, nursing, speech and language, and social work) served as educators for mothers recruited from EI programs; 4 graduate students, pursuing degrees in social work and public health, served as educators for mothers who were identified from the autism clinic. Educator training entailed 1 day of didactics, followed by 3 to 5 practice sessions conducted under the supervision of investigators. All training sessions were audiotaped, and all educators received individualized feedback until they met predefined criteria for protocol adherence. Educators met in biweekly group sessions at each site for supervision with investigators (E.F., Z.F.C.S.). To assess intervention fidelity, we audiotaped one randomly selected PSE session from each intervention participant and used a standardized form developed in previous work21,22 to assess whether all 7 components of the intervention were present and delivered according to protocol.

Ethical and Safety Considerations The trial was approved by the Boston University Medical Center institutional review board and has been registered on clinicaltrials.gov (NCT01021384). Formal protocols (available on request) to support women with severe depressive symptoms

Original Investigation Research

or suicidal ideation were developed and reviewed by the Boston University Medical Center institutional review board.

Measures Parenting Stress Parenting stress was assessed using the Parenting Stress Index Short Form (PSI).23,24 A substantial body of published research links PSI scores to observed parent and child behaviors, specifically attachment style, social skills, and confidence. It is one of the only valid and reliable instruments that can assess a wide range of parenting behaviors in a single instrument, including the participant’s attachment to the child, social isolation, sense of competence in the parenting role, relationship with spouse/parenting partner, role restrictions, and parental mental health.25 It has excellent psychometric properties and has been used with racially and ethnically diverse populations, including Spanish-speaking families, and families of children with ASD.26-30 We analyzed parental stress as both a mean symptom score and relative to a prespecified clinical threshold, defined as a percentile score above the 90th percentile. A percentile score in this range represents clinically significant parenting stress.25 Depressive Symptoms Depressive symptoms were measured using the Quick Inventory of Depressive Symptomatology (QIDS).31 Because the QIDS has a wide scoring range, it can be used to detect depressive illness in populations with moderate- and low-level symptoms and is sensitive to change over time. It has excellent correlation with other depression scales,32,33 has been validated with community samples, and demonstrated reliability in culturally diverse postpartum populations34 and those with minor depression.35 Similar to analysis of parenting stress, we analyzed QIDS depression scores as a mean symptom score and relative to a prespecified clinical threshold (≥11), corresponding to moderately severe symptoms occurring during a 1-week recall period. Based on previous work34 among urban postpartum women, a QIDS score of 11 or more has greater than 88% specificity for predicting a major depressive episode. Coping Style Coping style was assessed using the Brief Coping Orientation to Problems, which measures 14 different adaptive and problematic coping reac tions. 3 6 B ased on prev ious research,37,38 we looked at 3 subscales that were hypothesized to mediate the relationship between the intervention and parenting stress: problem-focused coping, avoidant coping, and social coping. Child Functioning Child functioning was measured using the Parent/Primary Caregiver Form of the Communication Scale of the Adaptive Behavior Assessment System (ABAS II).39 The ABAS II is one of the few caregiver-report measures validated for use in young children. For children from birth to 5 years, the ABAS II was normed based on 750 teacher/child care provider ratings and 1350 parent ratings of children with both typical and atypical development. Scaled scores are standardized by child age. Internal consis-

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Research Original Investigation

Maternal Mental Health With Child’s Autism

mothers addressed during PSE sessions were obtained from individual session worksheets.

Table 1. Characteristics of Study Groups at Baseline % PSE (n = 59)

Characteristic

Usual Care (n = 61)

Maternal characteristics Age, mean (SD), y

32(6)

35(8)

Income

Improving maternal mental health after a child's diagnosis of autism spectrum disorder: results from a randomized clinical trial.

The prevalence of psychological distress among mothers of children with autism spectrum disorder (ASD) suggests a need for interventions that address ...
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