Lifelong Parenting of Adults With Developmental Disabilities: Growth Trends Over 20 Years in Midlife and Later Life

Namkung, Eun Ha; Greenberg, Jan S.; Mailick, Marsha R.; Floyd, Frank J.

doi:10.1352/1944-7558-123.3.228

Cited by 31 publications

(25 citation statements)

References 19 publications

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“…The results of this longitudinal study paint a bittersweet picture for the change in the well-being of parents of individuals with developmental and mental health problems, similar to evidence suggested by previous longitudinal work (e.g., Baxter et al, 2000 ; Namkung et al, 2018 ). Parents in both of these groups showed normative decreases in negative affect over time that were in line with those experienced by the sample as a whole (See Table 2 for time effects).…”

Section: Discussionsupporting

confidence: 82%

“…Although these findings provide initial evidence of potential adaptation among parents, they are limited by cross-sectional designs. Longitudinally, parents of individuals with developmental conditions have shown declines in some aspects of physical and psychological well-being into old age, with parents whose child still resided at home during adulthood at greatest risk ( Namkung et al, 2018 ). Therefore, there is still much to be learned about how the impact of caregiving stress changes over time, especially for parents of children with mental health problems, who may be less likely than individuals with developmental conditions to continue residing at home into adulthood.…”

Section: Introductionmentioning

confidence: 99%

“…For instance, mothers’ economic situations may be more heavily impacted by caregiving burden than that of fathers, resulting in lower earnings and less time spent working ( Parish et al, 2004 ; Seltzer et al, 2001 ). Additionally, they may be at risk for more physical symptoms associated with caregiving burden than fathers ( Namkung et al, 2018 ), as well as poorer mental health outcomes ( Homan et al, 2020 ; Penning and Wu, 2016 ; Smith and Grzywacz, 2014 ), and cognitive functioning ( Song et al, 2016 ). However, other work has suggested that gender does not moderate the effects of parental caregiving stress ( Ha et al, 2008 ), and that mothers potentially benefit more from the positive aspects of caregiving compared to fathers ( Homan et al, 2020 ).…”

Section: Introductionmentioning

confidence: 99%

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Longitudinal changes in well-being of parents of individuals with developmental or mental health problems

Sloan

Mailick

Hong

et al. 2020

Social Science & Medicine

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Rationale A large body of work demonstrates the impact of caregiving burden on the well-being of parents of individuals with developmental conditions or mental health problems. However, a relative dearth of research examines this impact longitudinally into parents' older age. Objective. The current study examines (1) longitudinal changes in the effect of having a child with a developmental or mental health problem on parental negative affect, psychological well-being, and somatic symptoms, (2) age and gender moderations on these effects, and (3) the unique impact of factors related to the child's condition. Method. This study employs hierarchical linear regression models to examine longitudinal survey data from midlife adults (N = 1,101) from two waves of the National Study of Midlife in the United States (MIDUS). Results. Models revealed some evidence for age attenuation of the impact of caregiving stress. Parents of children with developmental problems still had higher negative affect, poorer psychological well-being, and more somatic symptoms on average than parents in a comparison sample, whereas parents of children with mental health problems only showed evidence of higher negative affect compared to this sample. Within-group analyses also revealed differences between each parenting group into later adulthood. Conclusions. Parents of individuals with developmental or mental health problems may be at risk for poorer well-being late in life. Yet, age and gender differences as well as diagnostic group differences nuance these findings.

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Section: Discussionsupporting

confidence: 82%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Longitudinal changes in well-being of parents of individuals with developmental or mental health problems

Sloan

Mailick

Hong

et al. 2020

Social Science & Medicine

Self Cite

View full text Add to dashboard Cite

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“…Although this finding may represent an acceptance by parents of their responsibilities, this cannot be taken for granted. As parents age, they may encounter other difficulties that did not arise within this sample of parents or were not included as variables within this study, such as declining physical and mental wellbeing of the parents, the loss of a partner through death, and increased poverty through loss of income [22]. Further research is needed to explore the impact of such variables with parents older than those recruited to the present study.…”

Section: Discussionmentioning

confidence: 99%

Parental Satisfaction with Caregiving across the Life Span to Their Children with Developmental Disabilities: A Cross-Sectional Study in Iran

Samadi

McConkey

Boghrabadi

2020

IJERPH

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The increased life expectancy of adult individuals with developmental disabilities and the likelihood of parents having to continue caregiving into their old age is an emerging international issue which deserves investigation, especially concerning satisfaction with caregiving. Moreover, this needs to be assessed in different cultures in order to create a better understanding of how families are best supported in their lifelong caregiving. A sample of 408 parents was gathered in six cities across Iran with a son or daughter who had a confirmed developmental disability. Self-completed measures of satisfaction and stress were obtained along with demographic details of the child and family. Satisfaction with caring was generally positive and was similar for mothers and fathers, for older as well as for younger parents; and between different types of developmental disabilities. However, both personal and child satisfaction decreased when parents reported increased stress and when caring for teenage and adult offspring and those with behavior problems. Parents need to receive support to sustain their motivation and satisfaction with caregiving if their quality of life and that of their children with disabilities is to be maintained and enhanced across their lifespan.

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“…Murphy et al, 2011;N. Murphy, Christian, Caplin, & Young, 2007;Namkung, Greenberg, Mailick, & Floyd, 2017). This is important for clinicians to recognize and address.…”

Section: Intervention Addressing Environmental Modificationsmentioning

confidence: 99%

Achieving Participation-Focused Intervention Through Shared Decision Making: Proposal of an Age- and Disorder-Generic Framework

Baylor

Darling-White

2020

Am J Speech Lang Pathol

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Introduction The World Health Organization's International Classification of Functioning, Disability and Health calls on speech-language pathologists (SLPs) to provide care that impacts all aspects of an individual's experience with a communication disorder, including their participation in valued life situations. However, SLPs often report feeling unprepared to implement and document interventions that target life participation. The purpose of this article is to propose a framework to guide participation-focused intervention practices. This age- and disorder-generic framework is designed to be applicable with clients across the variety of settings in which SLPs work. Method In this clinical focus article, we draw on past research and clinical experience to propose a restructuring of World Health Organization's International Classification of Functioning, Disability and Health components such that participation is the primary focus and outcomes indicator for intervention. In this framework, a specific communicative participation situation is identified and assessed quantitatively, and a corresponding participation-focused goal is established through shared decision making. Following that, assessments are conducted and goals are established in the areas of communication skills, physical and social environments, and personal perspectives. Results The proposed framework provides a concrete organizational structure as well as assessment, goal-writing, and intervention examples to assist SLPs in translating theoretical biopsychosocial frameworks into clinical practices. Conclusions SLPs can and do provide holistic communication services to clients to help them achieve their life participation goals. This article provides an example as to how we can document the need for, as well as the value and impact of our important work, meeting the diverse life participation needs of clients. Supplemental Material https://doi.org/10.23641/asha.12360758

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Lifelong Parenting of Adults With Developmental Disabilities: Growth Trends Over 20 Years in Midlife and Later Life

Cited by 31 publications

References 19 publications

Longitudinal changes in well-being of parents of individuals with developmental or mental health problems

Longitudinal changes in well-being of parents of individuals with developmental or mental health problems

Parental Satisfaction with Caregiving across the Life Span to Their Children with Developmental Disabilities: A Cross-Sectional Study in Iran

Achieving Participation-Focused Intervention Through Shared Decision Making: Proposal of an Age- and Disorder-Generic Framework

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