Mindful Self-Care for Caregivers: A Proof of Concept Study Investigating a Model for Embedded Caregiver Support in a Pediatric Setting

Journal of Autism and Developmental Disorders https://doi.org/10.1007/s10803-021-05113-6 ORIGINAL PAPER Mindful Self‑Care for Caregivers: A Proof of Concept Study Investigating a Model for Embedded Caregiver Support in a Pediatric Setting Katherine M. Bellone1,3 · Stephen C. Elliott1,3 · Linda S. Hynan1,2 · Beth Warren3 · Robin B. Jarrett1 Accepted: 26 May 2021 © Springer Science+Business Media, LLC, part of Springer Nature 2021 Abstract We conducted an open-trial proof of concept study to determine the safety, acceptability, and feasibility of Mindful Self-Care for Caregivers (MSCC) for parents of children with Autism Spectrum Disorders (ASD) (N = 13). The intervention was offered as a co-located care model in a pediatric specialty center where the participants’ children received care. Results demonstrated that the intervention was: highly acceptable to all stakeholders (i.e., participants, the group facilitator, and center administration) and could be conducted safely by a masters-level practitioner with minimal resources. Further, secondary measures support a hypothesized interventional model of MSCC, demonstrating gains in mindfulness skills and sense of competency in the parenting role reduced perceived stress and depression in parents of children with ASD. Keywords Mindfulness-based cognitive behavior therapy · Mindful self-care · Caregivers · Autism spectrum disorders Introduction Parents and caregivers of children with ASD face multiple challenges which significantly increase parental stress, evident when “parenting demands exceed the expected and actual resources available to parents that permit them to succeed in the parent role” (Deater-Deckard et al., 2013), or defined by “a person’s self-report of adaptive capacity overload” (Kupst et al., 2015). Such stressors may covary with challenging child behaviors, lack of access to effective treatments for their children, the financial burden of ASDrelated therapies, general lack of support or understanding by others (e.g., on public outings), and discord among parents and other family members related to parenting practices (Sharpley, 1997). * Katherine M. Bellone 1 Department of Psychiatry, University of Texas Southwestern Medical Center, 5323 Harry Hines Blvd, Mail Code 9086, Dallas, TX 75390, USA 2 Department of Population and Data Sciences, University of Texas Southwestern Medical Center, Dallas, TX, USA 3 Children’s Health System of Texas, Dallas, TX, USA Previous research on stress among parents of children with disabilities has found that overall, parents of children with disabilities experience clinically significant levels of stress compared to parents of typically-developing children (Hayes & Watson, 2013). However, even beyond this, parents of children with ASD experience significantly more stress than parents of children with other disabilities, such as Down Syndrome or intellectual disability (Hayes & Watson, 2013). Further, the percentage of parents endorsing negative perceptions of parenting is highest among parents of children with autism when compared to parents of children with special health care needs or emotional/behavioral concerns other than ASD (Schieve et al., 2007). Chronic parental stress not only reduces a caregiver’s ability to sustain daily roles and increases potential for developing mental health concerns, but also can negatively impact child outcomes (Davis & Carter, 2008). For example, research has suggested a bi-directional relationship between parental stress and behavior problems in children with ASD, such that over time, the presence of one factor tends to worsen the other (Lecavalier et al., 2006). Additionally, beyond worsening behavior problems, high levels of parental stress can reduce the positive treatment gains from early instructional interventions for children with ASD (Osborne et al., 2008). Although chronic parental stress likely has a negative effect on parent outcomes, research also demonstrates that 13 Vol.:(0123456789) Journal of Autism and Developmental Disorders parental stress has direct and measurable effects on child outcomes for children with ASD. Supportive programming for parents of children with ASD has been found to result in improvements in the child’s adaptive skills, communicative skills, and ASD-specific behaviors (Tonge et al., 2014). As additional evidence of this impact, Singh et al. (2006) demonstrated that training parents in mindful parenting approaches led to improvements in challenging behaviors, including noncompliance and self-injury, among children with ASD (2006). Thus, in addition to the common practice of teaching behavioral management strategies to parents, researchers note the importance and benefits of also teaching parents coping skills to help them with their own distress (Anderson, 2010). Clearly, helping parents develop better coping styles to manage chronic stress is beneficial to the family system as a whole. Over the last decade, research in the area of child-focused intervention and parenting increasingly includes mindfulness-based strategies. One prolific line of research started with Bogels et al. (2008), who conducted a study utilizing mindfulness based cognitive-behavioral therapy programming (MBCT; Teasdale et al., 1995) for parents along with their children with diagnoses of Attention-Deficit/Hyperactivity Disorder, Oppositional Defiant Disorder/Conduct Disorder, and ASD. Results indicated positive improvements for parents and children and supported the benefits of specifically targeting “Mindful Parenting.” Based on the observed benefits, Bogels and her collaborators have continued this line of investigation to emphasize the positive effects of offering parent and child mindfulness sessions in parallel (e.g., de Bruin et al., 2015; Ridderinkhof et al., 2018). Primary Purpose of the Study Given the efficacy of mindfulness-based stress reduction (MBSR; Kabat-Zinn, 1990, 2013) and MBCT (Teasdale et al., 1995) in reducing symptoms of depression and anxiety (Hofmann et al., 2010) as well as mental health concerns associated with chronic pain (Veehof et al., 2016), Lumpkin and Jarrett (2015) developed Mindful Self-Care for Caregivers (MSCC). Their practical manual was developed to guide seasoned mental health professionals in facilitating improved (mindful) self-care of groups of a) lay (not professional) caregivers and b) formal (professional) caregivers alike. The primary purpose of this proof of concept study was to evaluate the extent to which MSCC was feasible, safe and acceptable for parents of youth with ASD, according to both the parents and the MSCC facilitator. We hypothesized that MSCC would benefit caregivers of individuals with ASD, such that the caregivers, like the facilitator, would find the intervention acceptable, feasible, and safe. Additionally, we sought to explore our hypothesis that MSCC would lower depression, anxiety and stress of 13 parents. We proposed a model of behavior chan (...truncated)