Hope, Stigma, and Quality of Life in Autism Parents

Introduction and Research Rationale

The objective of this research is to analyze the relationship between hopefulness, quality of life (QOL), and internalized stigma among parents of autistic children. Autism spectrum disorder impacts not only the patient but also their parents, who require wide-ranging support services. The entire family of an autism patient experiences distress during its attempts to raise the child, potentially leading to diverse psychological and social problems among family members. Therefore, when catering to children with special needs and developing interventions for autism-diagnosed children, mental healthcare providers and social workers must consider parental mental health status. Family members who enjoy appropriate levels of societal acceptance and assistance tend to adjust better to challenges encountered in raising autistic children (Papageorgiou & Kalyva, 2010).

Stigma internalization represents a process in which patients' family members may exhibit elevated negative emotions, withdrawal from society, negative self-assessment, and attempts to conceal their stigmatized standing from others (Corrigan & Watson, 2003). Certain members of the community may stigmatize, ridicule, or accuse parents of autistic children, even going so far as to directly blame them for the developmental issues surfacing in their children. Stigmatized individuals undergo greater stress than others. In the social work subdomain linked to serving children with special needs, parents are frequently subject to considerable stigma — a burden that increases their stress and adversely impacts their QOL.

While these parents' lives are fraught with excessive stress, scholars who have examined resilience factors have found that not every parent falls victim to these harmful impacts. A positive outlook, for instance, reportedly corresponds to growth in social assistance and the welfare of autistic children's mothers (Ekas, Lickenbrock, & Whitman, 2010). Preliminary assessments of hope among parents of children with autism and other intellectual disorders indicate that hopefulness can serve as a resilience factor linked to lower stress and depression (Kashdan et al., 2002). Negligible or no research currently exists on the positive and negative aspects of parental expectations regarding their children's futures and the impact those expectations have on parental health. It is therefore imperative that social workers serving autistic children understand the impact of parental hope and internalized stigmatization on parental QOL in order to improve their lives. The alarming growth of this lifelong condition (Baird et al., 2006) calls for an urgent understanding of parental challenges and the identification of adjustment techniques for alleviating their negative impacts.

Social workers may contribute extensively to supporting autistic children and teenagers and their families by helping them remain hopeful. This forms the fundamental principle of this research. Family members of autistic young people may benefit from speaking with social workers and jointly tackling the multiple emotions and pressures that arise from witnessing a family member's struggles while also attempting to fulfill their own personal needs. Social workers may work separately with individual family members, offer couple counseling for parents, or provide family counseling for the entire family unit. These services may focus on numerous areas such as adjusting to the diagnosis, processing feelings related to the diagnosis, managing daily concerns, and navigating transition periods. The most important function of counselors in this context is instilling hope in order to improve parental QOL.

Literature Search Strategy

The most salient component of this research is its literature search. Literature reviews help researchers gain deeper knowledge of the topic under study. They enable scholars to examine existing information on a topic, determine how to differentiate their work from available works — thereby contributing to the literature pool on the subject — and develop a conceptual framework and research design. The latter may also be informed by existing literature that guides scholars toward sound research performance strategies. For instance, existing literature on this topic can help instruct the research scholar regarding the research design (qualitative, quantitative, or mixed) that will prove most appropriate for examining gaps in the available literature.

An effective literature search for this study will entail consulting every accessible resource. The formal steps for conducting a systematic review of literature (Cronin, Ryan, & Coughlan, 2008) are as follows:

• Choosing a topic for review
• Conducting a literature search
• Collecting, reading, and analyzing literature
• Writing the review
• Referencing

Subsequent to choosing the topic, the next step is to search internet databases, books, journal articles, government publications, and similar resources. In the current digital age, a successful, high-quality literature search is typically conducted with the aid of electronic databases that provide access to large amounts of quickly and easily retrievable information. Several electronic databases exist, and many specialize in specific subject areas.

Additional avenues for deepening subject knowledge include meeting with specialists in the field, consulting colleagues, attending seminars and conferences, and visiting professional organizations. The literature review must be comprehensive so as to facilitate identification of gaps in the existing research that may guide the framing of this study. Through continued refinement, the work will become increasingly specialized and focused. A summary of the literature will ultimately be provided to form an inclusive picture of what is known on the subject.

Informal discussions with individuals already knowledgeable about the study topic may also prove highly valuable, as they can offer guidance on how to move the search forward. Informal interviews with organizations that work with autistic children, special educators, psychologists, parents of autistic children, and associated social welfare organizations will therefore serve as a vital source. Numerous governmental departments also maintain comprehensive websites containing valuable links and content — such as policy documents and official statements — relevant to the research question. Seeking a librarian's assistance in acquiring national and international resources and literature may further enrich the review. The extended study must aim at achieving a thorough literature review that illuminates all facets of the research topic (Alston & Bowles, 2003).

Annotated Bibliography

The objective of this research is to analyze the relationship between hopefulness, quality of life (QOL), and internalized stigma among parents of autistic children. All of the articles described below are peer-reviewed and were located through PsycINFO, the Wiley Online Library, ScienceDirect, and other high-quality databases. The primary search terms used were stigma, autism, internalized stigma, quality of life, parents of autistic children, caregivers, and hopefulness.

Dardas, L. A., & Ahmad, M. M. (2014). Quality of life among parents of children with autistic disorder: A sample from the Arab world. Research in Developmental Disabilities, 35(2), 278–287. doi:10.1016/j.ridd.2013.10.029

Dardas and Ahmad's (2014) research paper examines the challenges linked to the QOL of autistic children's parents, making it a significant guide for the present study. The authors aimed to investigate differences in QOL between mothers and fathers of autistic children, along with psychosocial QOL correlates among autistic children's parents in the Arab world. No significant variance in physical, social, environmental, or mental well-being was found between mothers and fathers. Moreover, both parents exhibited similar relationships between QOL and parental coping approaches, demographic characteristics, and stress levels. This paper therefore indicates that the QOL of autistic children's parents depends on coping approaches, demographic traits, and stress levels, as well as, to a certain degree, cultural context. However, several methodological limitations must be considered when interpreting findings, including non-verification of autism diagnoses and the absence of a control or comparison group.

Faso, D., Neal-Beevers, A., & Carlson, C. (2013). Vicarious futurity, hope, and well-being in parents of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 7(2), 288–297. doi:10.1016/j.rasd.2012.08.014

This study explored the relationship between vicarious futurity and hope, and examined how both predicted well-being among parents of autistic children. Findings suggested that, irrespective of the severity of the child's autism symptoms, vicarious futurity was a powerful predictor of parental stress; hope predicted depressive symptoms; and both vicarious futurity and hope predicted parental life satisfaction. This study strengthens the rationale of the present research by addressing the degree to which general hopefulness is beneficial to parental health. It suggests that life satisfaction increases and parental stress decreases among autistic children's parents through vicarious hope. However, the research sample did not include individuals from diverse ethnic and socioeconomic backgrounds, a limitation that future research should address.

Gray, D. (1993). Perceptions of stigma: The parents of autistic children. Sociology of Health & Illness, 15(1), 102–120. doi:10.1111/1467-9566.ep11343802

Gray's work is a qualitative study of stigma among parents of autistic children. Autism was found to be associated with unique stigmatizing factors, leading most parents of autistic children to consider themselves stigmatized by society owing to their child's condition. Furthermore, parents of children under 12 years of age with more severe disabilities showed somewhat greater likelihood of perceiving themselves as stigmatized. This paper provides empirical grounds for the claim that parents of severely disabled children are more likely to experience stigma. However, the study sample was limited in size, potentially affecting the generalizability of results.

Kuhlthau, K., Payakachat, N., Delahaye, J., Hurson, J., Pyne, J. M., Kovacs, E., & Tilford, J. M. (2014). Quality of life for parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 8(10), 1339–1350. doi:10.1016/j.rasd.2014.07.002

This paper is grounded in a mixed-methods research project examining health-related QOL among parents of autistic children. In comparison to the normative population, health-related QOL for this parent group was found to be poor. Furthermore, families in which at least three children required special healthcare showed lower QOL and a greater caregiving burden than families with fewer children with special needs. The paper contributes significantly to the present research by emphasizing the importance of parental wellness and health maintenance, and by advising social workers who serve autistic children and their families to consider providing enhanced social support. However, a key limitation of this study is potential bias due to sample self-selection; the sample comprised primarily well-educated, financially comfortable parents, which may not represent all parents of autistic children.

Mak, W., & Kwok, Y. (2010). Internalization of stigma for parents of children with autism spectrum disorder in Hong Kong. Social Science & Medicine, 70(12), 2045–2051. doi:10.1016/j.socscimed.2010.02.023

Mak and Kwok employ an integrated theoretical framework to examine the relationship between internalized peer stigma, social support, and mental health status among parents of autistic children. Support from family, spouses, professionals, colleagues, and friends was found to be differentially associated with mental health and internalized stigma. Stigma internalization among autistic children's parents was found to be severe. This paper produces highly significant findings for the present research, underscoring the point that supporting family members may help reduce stigma and improve the QOL of autistic children's parents. Despite its many strengths, the study employs a cross-sectional design, which means that causal inferences cannot be drawn.

Werner, S., & Shulman, C. (2013). Subjective well-being among family caregivers of individuals with developmental disabilities: The role of affiliate stigma and psychosocial moderating variables. Research in Developmental Disabilities, 34(11), 4103–4114. doi:10.1016/j.ridd.2013.08.029

The authors of this paper conducted a study to determine the relationship between subjective QOL and stigma internalization among family caregivers. The QOL of family caregivers of autistic individuals was found to be particularly low. This thorough research guides the present study with its conclusion that caregivers must be provided with support to ensure their QOL improves and stigma internalization decreases. However, the researchers selected a non-random and small sample, with some respondents carrying two or more primary diagnoses. Additionally, diagnoses were based on caregiver reports rather than objective assessments corroborated by psychiatric records, which may negatively impact study validity.