Exploring Patterns of Advocacy and Well-Being of Parents of Children With Intellectual and Developmental Disabilities

2021 ◽  
Vol 59 (6) ◽  
pp. 459-471
Author(s):  
Kristina Rios ◽  
Janeth Aleman-Tovar ◽  
Meghan Burke
Keyword(s):  
Quality Of Life ◽  
Developmental Disabilities ◽  
Well Being ◽  
Marital Relationships ◽  
Future Research ◽  
Family Quality Of Life ◽  
Intellectual And Developmental Disabilities ◽  
Structured Interviews ◽  
Research And Practice

Abstract Advocacy is often an expectation for parents of children with intellectual and developmental disabilities (IDD). However, little is known about how advocacy may impact parent well-being, including stress, family dynamics, and marital relationships. By exploring the effects of advocacy on well-being, interventions can be implemented to support both the advocacy and well-being of parents of children with IDD. To this end, the purpose of the study was to explore the pattern between positive and negative advocacy experiences of parents of children with IDD and the well-being of parents, families, and marriages. Semi-structured interviews were conducted with 38 parents of children with IDD. Regardless of the nature (i.e., positive, or negative) of the advocacy experience, participants reported that advocacy increased their stress. When the advocacy experience was positive, some participants reported improved family quality of life. Also, regardless of the nature of the advocacy experience, some participants reported feeling frustration within their marital relationships. Implications for future research and practice are discussed.

scholarly journals Comparative parenting stress measures between segmental and community-based rehabilitation services in parents of children and adolescents with intellectual and developmental disabilities (IDD): A cross-sectional survey

2021 ◽  
pp. 1-5
Author(s):  
Mikyoung Kim ◽  
Chanhee Park ◽  
Myungsook Park ◽  
Joshua (Sung) H. You
Keyword(s):  
Quality Of Life ◽  
Parenting Stress ◽  
Well Being ◽  
Rehabilitation Service ◽  
Family Quality Of Life ◽  
Intellectual And Developmental Disabilities ◽  
Community Based ◽  
Cross Sectional ◽  
Community Based Rehabilitation

BACKGROUND: There is a dearth of information on the effects of different types (Segmental rehabilitation service (SRS) vs Community-based rehabilitation service (CRS)) on the parenting stress and family quality of life in parents of children who have individuals with intellectual and developmental disabilities (IDD). OBJECTIVE: This paper is to compare the effects of SRS and CRS on parenting stress and family quality of life in parents of individuals with IDD. METHODS: A cross-sectional design was used to examine parenting stress and family quality life in cohorts of 120 fathers and mothers of children with IDD who had received either SRS or CRS participated in the survey. The outcome measures included the modified Parenting Stress Index (PSI) and the modified Beach Center Family Quality of Life Scale (mBCFQLS). The Mann-Whitney U test was performed at P< 0.05. RESULTS: A significant difference was observed in social stress in PSI between the SRS and CRS groups (P= 0.03). The child rearing, emotional well-being, and physical and material well-being variables in mBCFQLS were different between the SRS and CRS groups (P< 0.05), indicating superior benefits from CRS than SRS. CONCLUSIONS: These findings provide important information and about parenting stress and family quality of life in children with IDD, for developing effective rehabilitation programs and services for these parents.

scholarly journals Community intervention strategies to reduce the impact of financial strain and promote financial well-being: a comprehensive rapid review

2021 ◽  
Vol 28 (1) ◽  
pp. 42-50
Author(s):  
Nicole M. Glenn ◽  
Lisa Allen Scott ◽  
Teree Hokanson ◽  
Karla Gustafson ◽  
Melissa A. Stoops ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Community Intervention ◽  
Well Being ◽  
Small Sample ◽  
Financial Strain ◽  
Rapid Review ◽  
Research Centre ◽  
Future Research ◽  
The Impact

Financial well-being describes when people feel able to meet their financial obligations, feel financially secure and are able to make choices that benefit their quality of life. Financial strain occurs when people are unable to pay their bills, feel stressed about money and experience negative impacts on their quality of life and health. In the face of the global economic repercussions of the COVID-19 pandemic, community-led approaches are required to address the setting-specific needs of residents and reduce the adverse impacts of widespread financial strain. To encourage evidence-informed best practices, a provincial health authority and community-engaged research centre collaborated to conduct a rapid review. We augmented the rapid review with an environmental scan and interviews. Our data focused on Western Canada and was collected prior to the pandemic (May–September 2019). We identified eight categories of community-led strategies to promote financial well-being: systems navigation and access; financial literacy and skills; emergency financial assistance; asset building; events and attractions; employment and educational support; transportation; and housing. We noted significant gaps in the evidence, including methodological limitations of the included studies (e.g. generalisability, small sample size), a lack of reporting on the mechanisms leading to the outcomes and evaluation of long-term impacts, sparse practice-based data on evaluation methods and outcomes, and limited intervention details in the published literature. Critically, few of the included interventions specifically targeted financial strain and/or well-being. We discuss the implications of these gaps in addition to possibilities and priorities for future research and practice. We also consider the results in relation to the COVID-19 pandemic and its economic consequences.

scholarly journals Family Variables and Quality of Life in Children with Down Syndrome: A Scoping Review

2021 ◽  
Vol 18 (2) ◽  
pp. 419
Author(s):  
Anna Lee ◽  
Kathleen Knafl ◽  
Marcia Van Riper
Keyword(s):  
Quality Of Life ◽  
Down Syndrome ◽  
Scoping Review ◽  
Personal Development ◽  
Well Being ◽  
Future Research ◽  
Cross Sectional ◽  
Children With Down Syndrome ◽  
Family Variables

The purpose of this scoping review was to identify the family and child quality of life variables that have been studied in relation to one another in children with Down syndrome, the frequency with which different relationships have been studied, and the extent to which family variables were the focus of the research aims. A literature search was conducted to find studies published between January 2007 and June 2018. The initial search yielded 2314 studies; of these, 43 were selected for a final review. Researchers most often addressed family resources and family problem-solving and coping concerning child personal development and physical well-being. Little attention to child emotional well-being was observed, with none considering family appraisal of child emotional well-being. The relationship between family variables and child QoL rarely was the primary focus of the study. Methodologically, most reviewed studies used cross-sectional designs, were conducted in North America and based on maternal report. From future research considering the issues found in this review, healthcare providers can obtain an in-depth understanding of relationships between children and family variables.

“I Would Like to Have a Normal Brother but I’m Happy With the Brother That I Have”: A Pilot Study About Intellectual Disabilities and Family Quality of Life From the Perspective of Siblings

2021 ◽  
pp. 0192513X2110428
Author(s):  
Raquel A. Correia ◽  
Maria João Seabra-Santos
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Intellectual Disabilities ◽  
Family Relationships ◽  
Leisure Activities ◽  
Well Being ◽  
Family Quality Of Life ◽  
Adult Sibling ◽  
The Disabled

The relationships between siblings are the most long-lasting in families. When one of the siblings is a person with intellectual disabilities (ID), this relationship assumes an even more important role since this brother/sister will most likely become the disabled individual’s main caregiver. This pilot study had two aims: to explore the experience as an adolescent or adult sibling of a person with ID and to understand the perceptions of these siblings about quality of life as a sibling and about family quality of life. In-depth interviews were conducted with six siblings. The results showed that the experience of a sibling is positive and the acceptance process is of extreme importance. The domains which, from the sibling perspective, contribute to family quality of life are as follows: Family relationships, Acceptance, Health, Influence of values, Financial well-being, Support from others, and Leisure activities. The implications of these findings for intervention are pointed out.

scholarly journals Health-related quality of life among 13–14 year old adolescents with overweight - a mixed methods approach

2019 ◽  
Author(s):  
Turid Kristin Bigum Sundar ◽  
Kirsti Riiser ◽  
Milada Småstuen ◽  
Randi Opheim ◽  
Knut Løndal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Well Being ◽  
Reference Population ◽  
Health Related Quality ◽  
Structured Interviews ◽  
Post Intervention ◽  
Related Quality ◽  
Health Related

Abstract BackgroundOverweight and obesity are public concerns with risk of adverse health outcomes. Health-related quality of life (HRQoL) is lower in adolescents than children in general. An increase in body mass index (BMI) is associated with a decrease in HRQoL. The purpose of this study was to measure and explore the HRQoL among adolescents with overweight or obesity who had participated in an intervention study with the aim of increasing PA, reducing BMI and promoting HRQoL.Methods Mixed methods, with a convergent design, were used to investigate how different methodological approaches could expand our understanding of the adolescents’ HRQoL. Quantitative post-intervention data on HRQoL were collected among the 84 intervention participants, aged 13–14 years, using the KIDSCREEN 52 questionnaire. The data were compared with a Norwegian reference population of 244 individuals, and analysed using a non-parametric Mann-Whitney test. Qualitative semi-structured interviews were conducted with 21 adolescents from the intervention. A directed approach to content analysis was adopted, using the ten sub-scales from KIDSCREEN 52.ResultsHRQoL in the intervention sample was significantly reduced on the sub-scale of physical well-being compared to the reference population. The reference population scored significantly lower than the intervention sample on the sub-scale of parent relation and home life. No significant differences were found on the other sub-scales. The qualitative data supported the quantitative findings on the sub-scale of physical well-being, but showed that perceptions of fitness, energy level or health could vary. Regarding parent relations, the interviewees extended this to include relationships to other family members as equally important. Most of the interviewees expressed a negative view of their bodies, but not their clothing or accessories. This may explain why no statistically significant differences were found on these aspects in the results from the KIDSCREEN questionnaire. ConclusionThe use of the KIDSCREEN 52 instrument gave important indications about the adolescents’ HRQoL. Combining methods enabled a comprehensive approach to research on HRQoL, indicating better ways of providing help. More research using the benefits of mixed methods approaches is needed to further elucidate these findings.

The Influence of Attending Festivals with Children on Family Quality of Life, Subjective Well-Being, and Event Experience

2021 ◽  
Author(s):  
Yi Liu ◽  
Jason Draper
Keyword(s):  
Quality Of Life ◽  
Family Relationships ◽  
Structural Equation ◽  
Well Being ◽  
Equation Modeling ◽  
Family Quality Of Life ◽  
Subjective Well Being ◽  
Family Activity ◽  
The Relationship

Participants attending a festival(s) with children is a family activity that influences family relationships. This study examines the relationship between attending status (e.g., with or without children), event experience, subjective well-being, and family quality of life (FQOL). A total of 585 festival participants’ data analyzed by structural equation modeling (SEM) revealed that participants attending with children have a higher level of subjective well-being and FQOL compared to those without children. Participants attending with children have a higher level of cognitive engagement and experience novelty in festivals compared to those without children. Event experience results in a significant positive relationship with subjective well-being. This study expands current event literature in terms of FQOL and provides a practical guideline to event organizers to better understand the significance of festivals.

Family Role in the Development of Self-Determination for Youth With Intellectual and Developmental Disabilities: A Scoping Review

2021 ◽  
Vol 59 (4) ◽  
pp. 315-334
Author(s):  
Evan E. Dean ◽  
Anne V. Kirby ◽  
Mayumi Hagiwara ◽  
Karrie A. Shogren ◽  
Deniz Tekin Ersan ◽  
...  
Keyword(s):  
Developmental Disabilities ◽  
Scoping Review ◽  
Self Determination ◽  
Future Research ◽  
Knowledge Gap ◽  
Intellectual And Developmental Disabilities ◽  
Family Role ◽  
Research And Practice ◽  
Family Perspectives ◽  
Home Context

Abstract The development of self-determination is promoted by supportive contexts during adolescence; families are a key part of this context. In adolescent populations, research suggests families can support self-determination in a number of ways, yet less is known about how self-determination is promoted within families of youth with intellectual and developmental disabilities (IDD). To address this knowledge gap, we conducted a scoping review to examine the existing evidence pertaining to the role families of youth with IDD play in supporting the development of self-determination. A review of 24 publications revealed that existing research has focused on understanding family perspectives on self-determination, but there is a lack of studies investigating how families provide supports for self-determination in the home context for youth with IDD. Additionally, little intervention work has focused on supporting families to promote self-determination. Based on the findings, implications for future research and practice are provided.

Sign in / Sign up

Export Citation Format

Share Document