Parent experiences and coping processes when raising children with Asperger syndrome: Challenges, turning points and building resilience

<p>This study explored parent experiences and their coping responses raising a child or children with Asperger syndrome, an autism spectrum disorder. A family resilience framework was used to interpret the process of positive adaptations that led to resilience. A disability studies perspective considered how parents reconceptualised what was ‘normal’ as they managed the friction between societal views of difference and their child’s strengths. The chosen methodology was narrative inquiry with a thematic approach to the narrative analysis. Semi-structured interviews were conducted with 25 parents and 1 grandparent of children with Asperger syndrome in New Zealand. This study found families experienced significant stress when raising a child or children with Asperger syndrome and considerable adaptations over the course of their child’s growing up years were made. Four key themes around challenges were identified: the challenges associated with Asperger syndrome, such as their child’s difficult behaviour, social skill difficulties and high sensory sensitivities; challenges arising from a lack of understanding and acceptance in the community that led to stigma and social withdrawal; challenges interacting with health and education services, such as a long medical diagnostic process and inadequate support at school; and challenges to family dynamics that resulted in increased tension between family members. Turning points were identified as part of the process of building resilience as parents successfully managed difficult circumstances at critical junctures in their lives. Positive coping strategies included meaning making, developing resources, planning ahead and solving problems; and strengthening intrapersonal assets. The findings from this study contribute to the theoretical construct of resilience and to the emerging literature on positive adaptations. Implications for practice include encouraging respectful parent and professional relationships; strengthening social support, especially through parent groups; raising parents’ self-efficacy through tailored behavioural strategies for their child; early intervention and targeted school resources; and support at critical times.</p>

Parent experiences and coping processes when raising children with Asperger syndrome: Challenges, turning points and building resilience

<p>This study explored parent experiences and their coping responses raising a child or children with Asperger syndrome, an autism spectrum disorder. A family resilience framework was used to interpret the process of positive adaptations that led to resilience. A disability studies perspective considered how parents reconceptualised what was ‘normal’ as they managed the friction between societal views of difference and their child’s strengths. The chosen methodology was narrative inquiry with a thematic approach to the narrative analysis. Semi-structured interviews were conducted with 25 parents and 1 grandparent of children with Asperger syndrome in New Zealand. This study found families experienced significant stress when raising a child or children with Asperger syndrome and considerable adaptations over the course of their child’s growing up years were made. Four key themes around challenges were identified: the challenges associated with Asperger syndrome, such as their child’s difficult behaviour, social skill difficulties and high sensory sensitivities; challenges arising from a lack of understanding and acceptance in the community that led to stigma and social withdrawal; challenges interacting with health and education services, such as a long medical diagnostic process and inadequate support at school; and challenges to family dynamics that resulted in increased tension between family members. Turning points were identified as part of the process of building resilience as parents successfully managed difficult circumstances at critical junctures in their lives. Positive coping strategies included meaning making, developing resources, planning ahead and solving problems; and strengthening intrapersonal assets. The findings from this study contribute to the theoretical construct of resilience and to the emerging literature on positive adaptations. Implications for practice include encouraging respectful parent and professional relationships; strengthening social support, especially through parent groups; raising parents’ self-efficacy through tailored behavioural strategies for their child; early intervention and targeted school resources; and support at critical times.</p>

The Value of Cognitive Pretesting: Improving Validity and Revealing Blind Spots through the Development of a Newborn Screening Parent Experiences Survey

Surveys are used to gather a range of data on newborn screening (NBS) processes. We describe the development of a survey about parents’ NBS experiences, in the United States, informed by cognitive pretest interviews among parents with varying NBS test results (true-positive, false-positive, normal). Cognitive pretest interviews were conducted following a semi-structured script and notes were taken to identify problematic survey items. The study team met weekly to discuss pretest feedback, draft changes, and generate revised items. Pretests indicated that parent experiences with NBS are varied and NBS screening procedures are not well understood. Substantial modifications were made to survey questions concerning NBS testing and result communication. Pretesters often associated NBS with other tests/exams/scales—APGAR scores, Ages and Stages questionnaires, and genetic testing during pregnancy. Some pretesters recalled receiving NBS blood spot results during their hospital admission, an uncommon practice, and few recalled knowing results would be provided to them or their pediatrician in the first few weeks of life. Thorough explanations regarding NBS procedures and expectations were embedded within the survey to enhance and improve interpretation of survey questions. Future NBS experience surveys should utilize cognitive pretesting to capture divergent experiences and improve response validity.

Emotional labour in the parenthood

This study introduces the concept of emotional labour, the theoretical underpinnings of its delineation and connections to emotion regulation and brings it into the context of parenthood. Emotional labour was originally described by sociologists in the context of a work environment which requires one to consciously influence one’s emotions when interacting with a customer or a client. The connection of emotional labour with psychological theories of emotion regulation allowed for a better understanding and grasp the mechanisms through which emotional labour can lead to “burning out” or stress. Currently, parents are exposed to a great amount of information about how to “correctly” parent their children, which together with their own idea of a good parent, the influence of their family and close friends as well as other people, creates high demands precisely in the area of experiencing and expressing emotions in their interactions with their children. Today, the parent role approaches that of the job in several aspects. Its demands for emotional labour can be linked to negative impacts on mental health. The concept of emotional labour can be considered to be appropriate for a better understanding of what a parent experiences with the child in mundane situations and how parents handle the emotions. The perspective of emotional labour can therefore bring important information about emotions in parenthood and about the influence of intentionally working with these emotions on the mental functioning of parents even beyond the explanatory confines of emotion regulation. This study also introduces measurement instruments used to capture emotional labour and its dimensions. For future research of emotional labour in parenthood, creating a valid and reliable instrument, which has so far been lacking both in the Czech and international contexts, is a necessity.