Coping in Parents of Children Diagnosed with Autism Spectrum Disorders

Coping in parents of autistic children has been studied extensively with emphasis on the effect oflong-term disability on families. The increase in the prevalence of autism in the United States increases the likelihood that many families will be managed by midlevel providers including advanced practice nurses (APNs). Parents and siblings of children with ASDs suffer from more stress and mental health issues than families with typically developing children or other disabilities such as Attention Deficit Hyperactivity Disorder (ADHD) and Down syndrome. The purpose of this independent study was to review the literature and practice guidelines examinjng coping in parents of autistic children in order to identify risks and strategies employed by parents in dealing with the challenges of raising a child with ASDs. The sampled articles used in this study were purposely selected based on their examination of the various aspects of stress and coping in parents of children with ASDs. Results showed that parents used a variety of coping strategies and appeared to learn better coping strategies as their children grew older and they adapted better to their children\u27s routine. Parents with low levels of social support and parents who had children with more severe symptoms had more difficulty in coping. Mothers were more likely than fathers to seek social support and other resources. Social support, support groups and other positive coping strategies such as refran1ing were used by autistic families. The goal of this capstone project was to design a brochure for APNs. APNs are in a unique position to help identify risks, educate affected families, provide timely services, and make appropriate referrals

Living with Hope: Resilience Among Parent/s of Children with Autism in Palembang Therapy Center

In the developing countries, social services for people with disability (PwD) are still limited and responsibility for the development of chil- dren with disability is often associated with their parent/s. The children with special needs, including those with autism, impacts all members of his/her family and leads to the emergence of crisis experiences in the family. The article talks the resiliency of parent/s with autistic chil- dren in Palembang Terapi Center. This paper is written with a phenom- enological approach. Findings show that dominant themes emerged regarding resiliency in this paper setting are self-acceptance, self-ef- ficacy, and adaptation. Several factors that influence the resilience of parents with autistic children are individual abilities, children’s con- ditions, environment, and religious values. Moreover, there are three types of resiliencies according to the level of difficulty experienced by parent/s; high level of difficulty, moderate level of difficulty, and lower level of difficulty. Di negara berkembang, keterbatasan layanan sosial bagi penyandang disabilitas dan tanggung jawab atas tumbuh kembang anak penyandang disabilitas seringkali dikaitkan dengan orang tua. Keberadaan anak berkebutuhan khusus, termasuk anak dengan autisme berdampak pada seluruh anggota keluarga dan berujung pada kemuncul pengalaman krisis keluarga. Artikel ini mengeksplorasi resiliensi orang tua yang memiliki anak dengan autisme di Pusat Terapi Palembang. Artikel ini ditulis dengan pendekatan fenomenologis. Temuan menunjukkan tema terkait resiliensi dalam penerimaan diri, efikasi diri, dan adaptasi. Temuan lain adalah faktor yang mempengaruhi resiliensi orang tua yang memiliki anak autisme dengan kemampuan individu, kondisi anak, lingkungan, dan nilai agama. Selain itu, ada tiga jenis resiliensi menurut tingkat kesulitan yang dialami orang tua; tingkat kesulitan tinggi, sedang, dan rendah

An exploration into the stressors and coping strategies of parents caring for children living with Autism spectrum disorder

This study sought to understand the experiences and challenges of parents caring for a child living with autism spectrum disorder (ASD). A qualitative research design was used to explore the stressors faced, coping strategies used, and support mechanisms needed by parents caring for a child living with ASD within South Africa. Non-probability sampling was used to select 20 respondents, initially using purposive and then snowball sampling techniques, until the target sample size was reached and data saturation had occurred. Respondents consisted of South African mothers who care for a child living with ASD, and who live in Cape Town, Johannesburg, or Durban. Data was collected with the use of semi-structured one-on-one interviews, and was analyzed according to Tesch's (1990) eight steps of analysis. The study found that there were various practical stressors for respondents regarding caring for a child living with ASD. This included the stressors of managing their child's difficult behaviours, respondents' high levels of anxiety as a result of these behaviours, and difficulties communicating with their child. Stressors also included the high cost of care and interventions, difficulty finding appropriate schooling, and the need to consult multiple professionals before receiving the diagnosis. The respondents' psychological stressors included experiencing grief and loss once their child was diagnosed, hurt from other's lack of understanding of ASD, and their concerns about their child's future. Various coping mechanisms were found to be used by respondents, including accepting the child with their diagnosis, increasing in patience and empathy, and attempting to manage and prevent their child's difficult behaviours. Another coping mechanism was to utilize a blend of interventions, for example Occupational and Speech Therapy, which catered to their child's unique ASD-presentation. Support mechanisms that were found to be beneficial to respondents were informal and consisted of support from family and from other parents caring for a child with ASD. This study concluded that caring for a child with ASD has many challenges, especially when one is the child's parent and primary caregiver. It also concluded that respondents displayed resilience towards these challenges by utilizing various coping and support mechanisms available to them. Numerous recommendations arose from this study, the most salient of which was for health care professionals (HCPs), which included social workers, as well as parents caring for a child living with ASD to educate themselves and others with regards to ASD. Another recommendation was for HCPs to link these parents with affordable and appropriate education and intervention options for their children

Resilience factors in low-income families with an autistic child

Autism Spectrum Disorder (ASD) encompasses a group of life-long neurodevelopmental disorders. It is an enormous challenge to care for someone with ASD. The majority of people with ASD will need life-long support from family members and will not be able to function independently in society. This places emotional and financial strain on a family. There are many low-income families in South Africa with autistic children who cannot afford specialised intervention. It has been estimated that 135 000 autistic children are not getting the specialized education they need. Despite not receiving the needed support, there are many low-income families who remain resilient after their child is diagnosed. This study aimed to explore how these low-income families remain resilient. Qualitative data was gathered using in-depth, semi-structured interviews conducted in English and Afrikaans; depending on the participant’s language of preference. Six participants were recruited with the help of professionals in a local community in Cape Town, Western Cape. The data obtained was transcribed and analysed through thematic analysis. Lincoln and Guba’s model (Krefting, 1990) was used to determine the trustworthiness of the data. The three themes that emerged from the study were (1) parents’ response to the diagnosis of their child, (2) the resources parents found helpful in their immediate environment and (3) the specific coping skills that parents use to remain resilient. Walsh’s family resilience framework as well as the Resiliency Model of Family Stress, Adjustment and Adaptation (The Resiliency Model) of McCubbin and McCubbin were used to understand how participants adjusted to their circumstance and remained resilient. This study provides a more in-depth understanding of the resilience factors of families with a child with ASD in a resource-limited setting in the Western Cape

Resilience factors in low-income families with an autistic child

Autism Spectrum Disorder (ASD) encompasses a group of life-long neurodevelopmental disorders. It is an enormous challenge to care for someone with ASD. The majority of people with ASD will need life-long support from family members and will not be able to function independently in society. This places emotional and financial strain on a family. There are many low-income families in South Africa with autistic children who cannot afford specialised intervention. It has been estimated that 135 000 autistic children are not getting the specialized education they need. Despite not receiving the needed support, there are many low-income families who remain resilient after their child is diagnosed. This study aimed to explore how these low-income families remain resilient. Qualitative data was gathered using in-depth, semi-structured interviews conducted in English and Afrikaans; depending on the participant’s language of preference. Six participants were recruited with the help of professionals in a local community in Cape Town, Western Cape. The data obtained was transcribed and analysed through thematic analysis. Lincoln and Guba’s model (Krefting, 1990) was used to determine the trustworthiness of the data. The three themes that emerged from the study were (1) parents’ response to the diagnosis of their child, (2) the resources parents found helpful in their immediate environment and (3) the specific coping skills that parents use to remain resilient. Walsh’s family resilience framework as well as the Resiliency Model of Family Stress, Adjustment and Adaptation (The Resiliency Model) of McCubbin and McCubbin were used to understand how participants adjusted to their circumstance and remained resilient. This study provides a more in-depth understanding of the resilience factors of families with a child with ASD in a resource-limited setting in the Western Cape

WE C.A.R.E 2: a parent-child community yoga program that promotes the health and well-being of caregivers and their children autism spectrum disorder

The prevalence of autism spectrum disorder (ASD) has increased two percent from 2012–2014 (Centers for Disease Control and Prevention, 2018) and the Centers of Disease Control and Prevention (CDC) has considered ASD to be a major health concern. The demands of caring for a child with developmental disabilities, including ASD can be overwhelming and the caregivers are experiencing heightened levels of stress in comparison to rearing typically developing children (Argumedes, Lanovaz, & Larivée, 2017; Lindo, Kliemann, Combes, & Frank, 2017). There is a need for more family support to implement more effective coping strategies to deal with the maladaptive functioning of the child with ASD (Hall, & Graff, 2011). The WE C.A.R.E. 2 Program is a nine-week evidence-based community pilot program that will provide an inclusive opportunity with additional family support and effective coping strategies e.g., breathing techniques, yoga postures and positive coping cognitions (e.g., positive self-talk and reappraisals) to decrease the stress levels of caregivers and promote healthy behaviors and healthy child development with the support and training from trained facilitators and a network of caregivers. This individualized plan will tailor to the needs of each dyad to create the necessary mechanisms of change (behavior, cognition, physiological, and sensory modulation) among the children and adults in the yoga group. The professional collaboration of different disciplines (occupational therapy, yoga therapist and teacher) will provide the appropriate modifications to the environment and provide the necessary input for the “just right” experience for a positive outcome

Families’ Experiences Raising a Child With Optic Nerve Hypoplasia

Optic nerve hypoplasia (ONH) is a leading cause of childhood visual impairment. Children with ONH are at significantly increased risk for a number of concomitant neurological and behavioral problems. This study applied phenomenological qualitative research methods to investigate the experiences that parents of children with ONH have with raising their child. Twelve parents of children with ONH were interviewed. Three major categories emerged from the data: (a) resiliency of parents who have children with ONH; (b) strategies that families of children with ONH use; and (c) connections that support families of children with ONH. The categories and associated themes are discussed as well as implications for future research efforts and recommendations for practitioners. The findings of this study indicate that parents value child-centered planning and creative problem solving to meet their children’s needs. Furthermore, children with ONH need routines, consistency, and structure to support their development

A Quantitative Study Examining Intentional Teaching of Social Emotional Skills

In a world where children are likely to experience early-life trauma, relationships matter, and trust is a key in forming healthy working relationships. Intentionally teaching adults and teachers how to evoke calmness in ourselves and breathe to handle negative situations, trusted educators can then teach children to do the same. It is important that educational leaders, and other stakeholders, explore what works best to help children overcome trauma and become resilient and productive adults. This study examined the relationship between social, emotional, and behavioral skills of students entering kindergarten who have been intentionally taught skills needed for resiliency by highly trained teachers, as incorporated into everyday activities, and students without this opportunity. The teachers who intentionally taught social/emotional skills to preschool-age children were trained in Conscious Discipline, a comprehensive classroom management program and a social-emotional curriculum based on current brain research, child development information, and developmentally appropriate practices. This study’s main sample consisted of 126 students with identified delay(s) and an Individualized Education Program (IEP), who attended a preschool where these skills were intentionally taught, 71 neurotypical students who attended the same preschool, and a random sample of 70 students who did not attend the same preschool. The Social, Academic, and Emotional Behavior Risk Screener (SAEBRS) assessed student skills from each sample category in social behavior, academic behavior, and emotional behavior. Analysis of variance (ANOVA) data and t-test statistical analyses appear to indicate children who have an opportunity to attend an early childhood program with teachers trained to implement a science-backed and research-based curriculum designed to teach strategies for improving self-regulation, resiliency, and peer interaction skills may not score statistically higher in all areas than their peer counterparts who have not attended such a program. However, there is enough evidence to indicate the benefit of attendance in such a program as overall scores generally reflected positive outcomes. The information indicated children who were intentionally taught how to deal with stress, whether that be traumatic stress caused by abuse or family dysfunction, or day-to-day stressors, will exhibit maladaptive behaviors to a lesser degree

From test to testimony: Resiliency after TBI diagnosis

Autoethnography research is a relatively new and innovative means of gathering data on oneself to connect to research and theory while advocating for change within a policy, law, and/ or environment. When doing my autoethnographic research, titled "From test to testimony: Resiliency after TBI diagnosis", I had to use my parents' as a part of my story to lend insights into the early parts of my story and gain access to my past medical records which included my condition and diagnosis. I present myself as a young, African American adult who has experienced a life- changing car accident in her childhood that resulted in a condition known as traumatic brain injury. Traumatic brain injury (TBI) is a condition where the brain is impacted by some sort of force/ trauma that can result in developmental impairments. In my situation, the car accident led to a TBI diagnosis which left me paralyzed on my right side and unable to function as an average 6-7 year old child. Because of the trauma I experienced, my family and others had to make changes to their lives and rely heavily on God to see them through. The Resiliency Model of Family Stress, Adjustment, and Adaptation describes precisely how my family experienced this crisis (family stress), made changes within their environment (adjustment) and overcame this problem using different resources in their surroundings (adaptation). Fowler's Spiritual theory, is the second theory that aptly helps me document the spiritual journey I experienced during the event. The aftereffects of TBI still remain with me, however, my unique experience and the opportunity to reflect on this story allows me to draw upon a few implications for the professionals and members of the society at large