scholarly journals Caregiver perspectives on the impact of uncertainty on the everyday lives of autistic children and their families

Autism ◽  
2021 ◽  
pp. 136236132110337
Author(s):  
Jane Goodwin ◽  
Priyanka Rob ◽  
Mark Freeston ◽  
Deborah Garland ◽  
Victoria Grahame ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Thematic Analysis ◽  
Intolerance Of Uncertainty ◽  
Well Being ◽  
Anxiety Reduction ◽  
Autistic Children ◽  
Structured Interviews ◽  
Daily Lives ◽  
The Impact

Approximately 50% of autistic children experience high anxiety. Intolerance of uncertainty (tendency to react negatively to uncertain situations) is a key mechanism in the development and maintenance of anxiety. This study aimed to provide a descriptive, thematic analysis of the impact on uncertainty on the daily lives of autistic children and their families. Semi-structured interviews were conducted with parents and caregivers of 53 autistic children (including 3 dyads) aged 6–16 years to elicit examples of uncertain situations that the children found challenging and to explore the impact of these situations on family life. Thematic analysis revealed five overarching themes: child’s reactions to uncertainty, trying to reduce uncertainty, the impact of difficulties with uncertainty, the impact of uncertainty on parenting and the impact on parents. These findings provide a crucial understanding into the range of uncertain situations autistic children with anxiety experience. Anxiety-reduction approaches based on increasing tolerance to everyday uncertain situations could help improve well-being, quality of life and participation for autistic children and their families. Lay abstract Anxiety is common in autistic children. Research shows that this may be related to intolerance of uncertainty, which is a tendency to react negatively to uncertain situations. Understanding when, why and how autistic children respond to uncertainty is important in the development of anxiety programmes. We asked 53 (including 3 dyads) parents of autistic children about the types of uncertain situations that cause difficulties for their child and how uncertainty impacts on daily life for them and their families. We found that uncertain situations made autistic children and their families feel sad, worried, frustrated and angry through the themes: child’s reactions to uncertainty, trying to reduce uncertainty, the impact of difficulties with uncertainty, the impact of uncertainty on parenting and the impact on parents. There are lots of situations that are anxiety provoking for autistic children because of uncertainty, such as school. Programmes to reduce anxiety and increase autistic children’s ability to cope with everyday uncertain situations could improve quality of life for autistic children and their families.

scholarly journals Quality of Life after Total Glosso-Laryngectomy

2007 ◽  
Vol 54 (1) ◽  
pp. 29-38 ◽  
Author(s):  
Leanie Engelbrecht ◽  
Anita Van der Merwe
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
South African ◽  
Thematic Analysis ◽  
Oral Communication ◽  
Well Being ◽  
Shared Decision ◽  
Structured Interviews ◽  
Multi Disciplinary Team

The article explores the quality of life of two participants who had undergone total glosso-laryngectomy as treatment for advanced tongue base cancer. Semi-structured interviews were conducted and questions relating to the effects of treatment on physical, functional, social and psychological well-being were asked. Thematic analysis of the interviews was done to determine recurring themes in the answers of the participants. The findings showed that total glosso-laryngectomy has a significant impact on quality of life. A good quality of life can be maintained in a patient who has an extensive support structure and can achieve intelligible oral communication. Pre-operative counselling by a multi-disciplinary team is important for a person to make an informed decision regarding surgery for head and neck cancer. Shared decision-making needs to be addressed in the South African service delivery context.

scholarly journals Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cerebral Palsy ◽  
Young People ◽  
General Population ◽  
Transition Period ◽  
Well Being ◽  
Personal Factors ◽  
The Impact

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

scholarly journals Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ryan Lange ◽  
Abigail Kumagai ◽  
Sara Weiss ◽  
Katherine B. Zaffke ◽  
Sherry Day ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Contrast Sensitivity ◽  
Qualitative Interviews ◽  
Well Being ◽  
Vision Impairment ◽  
Qualitative Interview Study ◽  
Patient Reported ◽  
Related Quality ◽  
The Impact

Abstract Background Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. Methods Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. Results The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of − 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. Conclusions There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

scholarly journals COVID-19 Pandemic and Quality of Life among Romanian Athletes

2021 ◽  
Vol 18 (8) ◽  
pp. 4065
Author(s):  
Germina-Alina Cosma ◽  
Alina Chiracu ◽  
Amalia Raluca Stepan ◽  
Marian Alexandru Cosma ◽  
Marian Costin Nanu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Trait Anxiety ◽  
Negative Impact ◽  
Well Being ◽  
Quality Of Life Scale ◽  
Life Scale ◽  
Personality Item ◽  
The Impact ◽  
The Relationship

The aim of this study was to analyze athletes’ quality of life during the COVID-19 pandemic. The study involved 249 athletes between 15 and 35 of age, M = 21.22, SD = 5.12. The sample was composed of eight Olympic Games medalists, three European medalists, 67 international medalists, and 63 national medalists. The instruments used were: (1) COVID-19 Anxiety Scale, (2) Athlete Quality of Life Scale, (3) Impact of Pandemic on Athletes Questionnaire, and (4) International Personality Item Pool (IPIP Anxiety, Depression, and Vulnerability Scales). The results indicate significant differences in COVID-19 anxiety depending on the sport practiced, F (9239) = 3.81, p < 0.01, showing that there were significant differences between sports. The negative impact of the COVID-19 pandemic mediates the relationship between trait anxiety and the athletes’ quality of life. The percentage of mediation was 33.9%, and the indirect effect was −0.11, CI 95% (−0.18, −0.03), Z = −2.82, p < 0.01. Trait anxiety has an increasing effect on the intensity of the negative impact of the COVID-19 pandemic, 0.23, CI 95% (.10, 0.35), Z = 3.56, p < 0.01, and the negative impact of the COVID-19 pandemic has a decreasing effect on quality of life, −0.47, CI 95% (−0.67, −0.27), Z = −4.62, p < 0.01. Gender and age did not moderate the relationship between the negative impact of COVID-19 and athletes’ quality of life. The results of the study highlighted the impact that social isolation and quarantine have on athletes’ affective well-being.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

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.

Mindfulness-based stress reduction for people with chronic diseases

2010 ◽  
Vol 16 (3) ◽  
pp. 200 ◽  
Author(s):  
Monika Merkes
Keyword(s):  
Quality Of Life ◽  
Chronic Diseases ◽  
Stress Reduction ◽  
Well Being ◽  
Multiple Chemical Sensitivity ◽  
Self Report ◽  
Original Research ◽  
Mindfulness Based Stress Reduction ◽  
The Impact

Mindfulness-based stress reduction (MBSR) is a structured group program that uses mindfulness meditation to improve well-being and alleviate suffering. This article reviews the impact of MBSR for people with chronic diseases. The review includes original research that was published in English and peer-reviewed and reported outcomes for adults with chronic diseases who had participated in an MBSR program. Fifteen studies were identified. Outcomes related to mental and physical health, well-being, and quality of life. The studies included different research designs, and used self-report and physiological outcome measures. Participants’ clinical diagnoses included fibromyalgia, chronic pain, rheumatoid arthritis, type 2 diabetes, chronic fatigue syndrome, multiple chemical sensitivity, and cardiovascular diagnoses. All 15 studies found that participation in an MBSR program resulted in improvements. No negative change was reported between baseline and follow up. Outcomes in regard to specific variables were difficult to compare and equivocal. Overall, positive change predominated. Chronic diseases are associated with a range of unwelcome psychological and physical consequences. Participation in an MBSR program is likely to result in coping better with symptoms, improved overall well-being and quality of life, and enhanced health outcomes. As an adjunct to standard care, MBSR has potential for much wider application in Australian primary care settings.

The Relevance of Personal Domain Satisfaction for the Quality of Life in South Africa

1988 ◽  
Vol 18 (3) ◽  
pp. 69-75 ◽  
Author(s):  
Valerie Møller
Keyword(s):  
Quality Of Life ◽  
South African ◽  
Well Being ◽  
Positive Influence ◽  
Subjective Well Being ◽  
South Africans ◽  
Relative Contribution ◽  
Personal Domain ◽  
The Impact

South African psychologists have identified the improvement of quality of life as a major goal of the 1980s. This paper reviews the impact of satisfaction with personal aspects of life on perceived well-being. The results of an exploratory study of South African quality of life conducted among 5 587 individuals of all population groups are discussed. Findings confirm the salience of the personal domain and the positive influence of personal satisfactions on subjective well-being. However, results of regression analyses suggest that the relative contribution of satisfactions in the personal domain is too low to play a major role in improving the quality of life of all South Africans in the longer term.

Comparison of mental health, well-being and parenting sense of competency among Australian and South-East Asian parents of autistic children accessing early intervention in Australia

Autism ◽  
2021 ◽  
pp. 136236132110100
Author(s):  
Jodie Smith ◽  
Rhylee Sulek ◽  
Ifrah Abdullahi ◽  
Cherie C Green ◽  
Catherine A Bent ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Early Intervention ◽  
East Asian ◽  
Well Being ◽  
Cultural Background ◽  
Autistic Children ◽  
Community Based ◽  
Health Quality

Parents from individualist cultures (those focused on autonomy of individuals; that is, Australian) may view their autistic children differently compared to parents from collectivist cultures (where community needs are valued over an individual’s, that is, South-East Asian cultures). As most research on autism and parenting has been undertaken in Western individualist cultures, knowledge of parenting beliefs and mental health within collectivist cultures is lacking. We compared the mental health, quality of life, well-being and parenting sense of competency between families raising an autistic child from two groups: 97 Australian parents and 58 parents from South-East Asian backgrounds. Children from both groups were receiving the same community-based early intervention. No group differences were found on the measures of mental health but, when compared to Australian parents, parents from South-East Asian backgrounds reported higher well-being and less impact on their quality of life resulting from their child’s autism-specific difficulties. Furthermore, a positive association between well-being and quality of life was only observed for South-East Asian parents. Hence, the views of, and responses to, disability for South-East Asian parents may act as a protective factor promoting well-being. This novel research indicates that culture plays a role in parenting autistic children and highlights the need to accurately capture cultural background information in research. Lay abstract We know that parents of autistic children experience poorer mental health and lower well-being than parents of non-autistic children. We also know that poorer mental health among parents of autistic children has been observed across different cultures. Most research focuses on Western cultures, so we know little about parental mental health and well-being of parents from different cultural backgrounds; yet, it is likely that cultural background contributes to how parents view their child’s condition and respond to the diagnosis. Here, we compared mental health, quality of life and well-being between families raising an autistic child from Australian backgrounds to families from South-East Asian backgrounds. All children in the current study were receiving the same community-based early intervention. When compared to the general population, parents had poorer mental health overall, but there were no differences between the two groups of parents. However, parents from South-East Asian backgrounds reported higher well-being and fewer difficulties associated with their child’s autism. These findings suggest that cultural background likely influences not only parent’s view of, and response to, their child’s autism, but also their own sense of well-being. As researchers and clinicians working with families of autistic children, we should more explicitly consider family’s cultural background within our work.

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