scholarly journals Effects of the COVID-19 pandemic on college students with intellectual disabilities

2021 ◽  
pp. 1-11
Author(s):  
Gwendolyn C. Carey ◽  
Brianna Joseph ◽  
Lisa A. Finnegan
Keyword(s):  
Postsecondary Education ◽  
Lived Experiences ◽  
Daily Living ◽  
Well Being ◽  
Life Outcomes ◽  
Need For Support ◽  
The Impact ◽  
Events Data ◽  
New Procedures

BACKGROUND: The lived experiences of adults with intellectual disability (ID) during the Coronavirus Disease 2019 (COVID-19) need to be considered when developing and implementing support for maintaining the quality of life outcomes for this population. OBJECTIVE: This study was conducted to capture and analyze adults’ lived experiences with ID during the COVID-19 pandemic. METHODS: A qualitative study with focus groups was conducted that included two groups of adults with ID; graduated (N = 4) and enrolled (N = 5) students from a postsecondary education (PSE) program. Questions were formulated based on societal feature areas that may be affected during unplanned historical events. Data were analyzed utilizing Vivo coding. RESULTS: Four themes (employment, daily living, social, well-being) and eleven subthemes emerged during the interviews. Participants described the impact of COVID-19, such as learning, and implementing new procedures in the workplace, taking on increased responsibilities at home, and the uncertainty of their future. CONCLUSIONS: Findings indicated the need for support for adults with ID to be established before unplanned events to maintain their outcomes as productive members of society. Implications include the need for increased support from immediate support systems.

Quality of Life for People With Dementia Living in Residential and Nursing Home Care: The Impact of Performance on Activities of Daily Living, Behavioral and Psychological Symptoms, Language Skills, and Psychotropic Drugs

2001 ◽  
Vol 13 (1) ◽  
pp. 93-106 ◽  
Author(s):  
Clive Ballard ◽  
John O'Brien ◽  
Ian James ◽  
Pat Mynt ◽  
Marisa Lana ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Activities Of Daily Living ◽  
Psychotropic Drugs ◽  
Daily Living ◽  
Psychological Symptoms ◽  
Well Being ◽  
Nursing Home Care ◽  
People With Dementia ◽  
The Impact

Many people with dementia reside in care facilities. Little is known about how key parameters impact upon their quality of life (QOL). All 209 people with dementia in six facilities received a standardized assessment (Neuropsychiatric Inventory [NPI], Barthel Scale, psychotropic drugs). One hundred twelve residents were assessed using Dementia Care Mapping, an observational method for QOL indices. Lower performance on activities of daily living (reduced well-being [WB] r = +0.39, p < .0001; social withdrawal [SW] r = +0.42, p < .0001; engagement in activities [EA] r = +0.31, p = .001) and taking psychotropics (WB 2.5 vs. 3.2, t = .2.3, p = .02; SW 11.4% vs. 2.7%, t = 3.0, p = .004; EA 56.5% vs. 71.9%; t = 3.5, p = .001) were associated with reduced QOL, but symptoms from the NPI were not. More focused prescribing of psychotropics and better staff training are essential.

scholarly journals ‘My scar is called adoption’: The lived experiences of Irish mothers who have lost a child through closed adoption

2021 ◽  
Vol 45 (2) ◽  
pp. 138-154
Author(s):  
Deborah McNamara ◽  
Jonathan Egan ◽  
Pádraig McNeela
Keyword(s):  
Lived Experiences ◽  
Interpretative Phenomenological Analysis ◽  
Personal Autonomy ◽  
Well Being ◽  
Structured Interviews ◽  
Loss Of Autonomy ◽  
Therapeutic Services ◽  
Coping Patterns ◽  
The Impact

Previous research has continuously identified a need for a comprehensive model of working with first mothers in adoption. This gap in knowledge has hindered the development of services, to the detriment of the quality of life and well-being of this group. This study seeks to remedy this deficiency by exploring the lived experiences of Irish mothers who have lost a child through closed adoption. It aims to expand understanding of the impact of such loss, in particular exploring how it affects their journey of reconnection and reunion with their child in adulthood. Semi-structured interviews were undertaken with six women from Ireland who had lost a child in this way and their narratives were analysed using Interpretative Phenomenological Analysis (IPA). Two superordinate themes emerged from the data: ‘Motherhood concealed: the loss of autonomy and connection’ and ‘Motherhood revealed: a pathway towards autonomy and reconnection’. Within each superordinate theme, two subordinate ones were identified: ‘Dehumanised, disempowered and dismissed’, ‘Coping through disconnection’, ‘Breaking the silence’ and ‘Reunion and reconnection’. The first two of these encapsulate the loss of personal autonomy and connectedness resulting from the loss of a child and how participants coped with it. The two others describe the participants’ experiences of growth in personal autonomy and agency through the process of breaking the silence of their concealed motherhood and of reconnection and reunification with their now adult children. The findings indicate that engaging in therapeutic services and/or with adoption peer support enables participants to express their feelings of grief and move from coping strategies dominated by disconnection to ones marked by the autonomous processing of emotion and new coping patterns. The process of reunification with their children plays a significant role in this transition.

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.

Delays in Manual Reaching Are Associated with Impaired Functional Abilities in Early Dementia Patients

2015 ◽  
Vol 40 (1-2) ◽  
pp. 63-71 ◽  
Author(s):  
Casper de Boer ◽  
Johan J.M. Pel ◽  
Johannes van der Steen ◽  
Francesco Mattace-Raso
Keyword(s):  
Daily Living ◽  
Hand Movement ◽  
Hand Tracking ◽  
Functional Abilities ◽  
Dementia Patients ◽  
Early Dementia ◽  
Tracking Devices ◽  
The Impact ◽  
Hand Response

Background/Aims: Recent evidence shows that early dementia patients have deficits in manual reaching tasks. It is important to understand the impact of these functional disabilities on their quality of life. The aim of this study was to investigate if there is an association between manual reaching and measures of (instrumental) activities of daily living (IADL) in a group of patients with cognitive complaints. Methods: The manual reaching performance of 27 patients was assessed in detail with eye and hand tracking devices. Patients were divided into three groups based on self-reported loss of IADL function. Parameters describing hand response and movement times were compared between groups. Results: Patients with loss of IADL function in ≥1 domain had delayed hand response and hand movement times towards visible targets compared to patients with no loss of IADL function. Conclusion: Delays in manual reaching movements are related to the degree of loss of IADL function in early dementia patients.

‘You don’t look autistic’: A qualitative exploration of women’s experiences of being the ‘autistic other’

Autism ◽  
2021 ◽  
pp. 136236132199372
Author(s):  
Kate Seers ◽  
Rachel C Hogg
Keyword(s):  
Lived Experiences ◽  
Well Being ◽  
Autism Spectrum ◽  
Social Expectations ◽  
Autism Spectrum Condition ◽  
Women’S Experiences ◽  
Women's Experiences ◽  
Spectrum Condition ◽  
The Impact ◽  
Experiences Of Women

There is currently a paucity of literature exploring the experiences of women on the autism spectrum. It is imperative research is conducted to capture the experiences of women on the autism spectrum and ensure appropriate support is provided to this cohort. Drawing upon a social constructionist framework, this qualitative research study sought to understand how psychological and socio-cultural constructions of autism spectrum condition and gender influence the well-being of women on the autism spectrum. Eight participants engaged in a semi-structured interview, with thematic analysis conducted to demonstrate the impact of gender roles and social expectations on the women’s identity and autism spectrum condition expression. The research highlighted the changing understandings of autism spectrum condition across a woman’s lifespan and the process and impact of resisting hegemonic autism spectrum condition categorisation. The findings demonstrate that social constructions of gender and stereotypical understandings of autism spectrum condition, which prioritise a deficit, medical model, have significant consequences for women’s well-being and subjectivity. The women experienced challenging formative years, but with diagnosis and the evolution and acceptance of their identities, they were able to resist negative narratives of autism spectrum condition, embrace their strengths and develop adaptive coping strategies. It is hoped this article generates insights for societal and clinical recognition to better support women on the autism spectrum. Lay abstract Most autism spectrum condition research addresses the neurological and biological causes of autism spectrum condition, focusing upon deficits associated with autism spectrum condition and behavioural interventions designed to minimise these deficits. Little is known about the lived experiences of adult women on the autism spectrum and how they navigate social expectations around gender, autism spectrum condition and gendered understandings of autism spectrum condition. The lived experiences of eight women on the AS will be shared here, with attention to how gendered expectations influence women’s experiences of autism spectrum condition, their sense of self and well-being. Findings showed these women struggled to reconcile the expectations of others, particularly early in life. The women had difficultly conforming to stereotypical ideals of femininity, yet as they aged, they felt less need to conform, valuing their unique style and behaviours. The women also rejected deficit-oriented descriptions of autism spectrum condition generated by the medical community, preferring to focus on their strengths and unique characteristics. It is hoped this article helps psychologists and the wider community to understand and meet the needs of women on the AS.

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.

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