scholarly journals TRAINING SENIOR VOLUNTEERS TO IMPLEMENT A GROUP MUSIC INTERVENTION FOR PERSONS WITH DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S662-S662
Author(s):  
Silvia Orsulic-Jeras ◽  
Sarah Nicolay ◽  
Cristen Kane
Keyword(s):  
Well Being ◽  
Advanced Degree ◽  
Older Individuals ◽  
Music Intervention ◽  
Structured Interviews ◽  
Volunteer Program ◽  
Senior Volunteers ◽  
Materials Used ◽  
The Impact

Abstract The Retired Senior Volunteer Program (RSVP) is a national program with many regional offices that offers a variety of volunteer opportunities for seniors. Research demonstrates the importance of volunteering and social participation on the well-being, health and longevity of older individuals. Further, studies of RSVP volunteers have demonstrated marked improvement in their perceived physical, mental health and quality of life (McDonald et al., 2013). Little evidence exists, however, supporting the effectiveness of using senior volunteers to assist with or even lead activities programming for persons with dementia (PWDs). Seniors Making Connections through Music, a group program designed to engage persons in the moderate to advance stages of dementia, included the training of 21 RSVP volunteers to lead or assist with the program. Volunteers were mostly female (95%) and educated (80% college/advanced degree), with more than half reporting professional or personal experiences with dementia (62%). Data were gathered through structured interviews and post-session debrief meetings. Findings suggest volunteers felt they were able to use existing knowledge and experience, received good and helpful supervision, and reported increased knowledge of dementia after volunteering for the group. Other results summarize: Volunteer satisfaction with program, role, tools and materials used, the program’s impact on the community, and willingness to volunteer for the program in the future. Programmatic features, training protocols, and the impact of using retired senior volunteers to strengthen program sustainability will be discussed. Volunteer testimonials and video demonstrations will also be shared.

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 Long-term Outcomes in Adolescents and Adults with a Cleft Lip and/or palate: Esthetics, Employment and Functioning

2021 ◽  
Author(s):  
Cassandra Alighieri ◽  
Evelien D'haeseleer ◽  
Kim Bettens ◽  
Katrien Bonte ◽  
Hubert Vermeersch ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Self Report ◽  
Control Group ◽  
Older Individuals ◽  
Significant Difference ◽  
Adolescents And Adults ◽  
The Impact

Abstract Background. To date, there seems to be no consensus on the long-term quality of life outcomes in patients living with a cleft of the lip and/or palate (CL/P) with regard to well-being and functioning. Some studies report a substantial influence of having a cleft while other studies report no influence of living with a cleft. The purpose of this study was to investigate the impact of living with a CL/P on esthetics, employment and functioning in Dutch-speaking adolescents and adults with a CL/P. Methods. 30 Patients with a CL/P (19 men and 11 women) were included in the study. The mean age of the participants was 26.93 years (SD = 11.688 years, range = 15 – 66 years). An age and gender matched control group was included consisting of 30 participants (19 men and 11 women) without a CL/P with a mean age of 26.87 years (SD = 11.729 years, range = 16-67 years). Esthetics, employment and functioning were assessed using different standardized self-report questionnaires. Results. No statistically significant difference in educational level, employment, monthly net income, marital status and having children was found between participants with and without a CL/P. In addition, the quality of life scores did not differ between the two groups. Within the group of individuals with a CL/P, the findings revealed that the proportion of participants who reported an influence of the CL/P on daily functioning, general well-being, social contacts, family life, applying for a job, work, education and leisure time differed by age. Older individuals experienced more influence of their CL/P compared to younger individuals. With regard to esthetics, the findings revealed that participants without a CL/P were less satisfied with the appearance of their jaws compared to participants with a CL/P. Conclusion. In general, the findings of our study revealed no significant differences between adolescents and adults with and without a CL/P with regard to employment and functioning. Considering age within the group of participants with a CL/P, however, the results demonstrated that older individuals were more likely to experience a negative impact of their cleft on well-being and functioning. These findings suggest that older individuals with a CL/P might benefit from additional socio-emotional support, for example peer contacts and support groups or psychological guidance. Longitudinal research on this topic is highly needed to determine possible fluctuations in the impact of living with a CL/P.

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 The Impact of SARS-CoV-2 (COVID-19) and its Lockdown Measures on the Mental and Functional Health of Older Individuals

2021 ◽  
Author(s):  
Maria Chiara Fastame ◽  
Ilaria Mulas ◽  
Valeria Putzu ◽  
Gesuina Asoni ◽  
Daniela Viale ◽  
...  
Keyword(s):  
Cognitive Decline ◽  
Wearable Sensors ◽  
Well Being ◽  
Functional Health ◽  
Cognitive Deterioration ◽  
Older Individuals ◽  
Physical And Mental Health ◽  
Psychological Well Being ◽  
The Impact ◽  
Healthy Participants

AbstractThe effect of the COVID-19 on the physical and mental health of Italian older individuals displaying signs of cognitive deterioration has not been deeply investigated. This longitudinal study examined the impact of COVID-19 lockdown measures on the psychological well-being and motor efficiency of a sample of Italian community-dwellers with and without cognitive decline. Forty-seven participants underwent instrumental gait analysis performed in ecological setting using wearable sensors, and completed a battery of tasks assessing cognitive functioning and psychological well-being, before and after the full lockdown due to the COVID-19 spreading. A series of Multivariate Analyses of Variance (MANOVAs) documented that the superior gait performance of the cognitively healthy participants exhibited before the COVID-19 spread, vanished when they were tested at the end of the lockdown period. Moreover, before the outbreak of the COVID-19, cognitively healthy participants and those with signs of cognitive decline reported similar levels of psychological well-being, whereas, after the lockdown, the former group reported better coping, emotional competencies, and general well-being than the participants displaying signs of cognitive decline. In conclusion, the full COVID-19 outbreak had a significant impact on the mental and motor functioning of older individuals with and without signs of cognitive deterioration living in Italy.

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 “You run out of hope:” An Exploration of Low-Income Parents’ Experiences with Food Insecurity using Photovoice

2021 ◽  
pp. 1-21
Author(s):  
Payge Lindow ◽  
Irene H. Yen ◽  
Mingyu Xiao ◽  
Cindy W. Leung
Keyword(s):  
Food Insecurity ◽  
San Francisco ◽  
Low Income ◽  
Eating Behaviors ◽  
Comparative Method ◽  
Well Being ◽  
Structured Interviews ◽  
Unhealthy Eating ◽  
Low Income Families ◽  
The Impact

ABSTRACT Objective: Using an adaption of the Photovoice method, this study explored how food insecurity affected parents’ ability to provide food for their family, their strategies for managing household food insecurity, and the impact of food insecurity on their well-being. Design: Parents submitted photos around their families’ experiences with food insecurity. Afterwards, they completed in-depth, semi-structured interviews about their photos. The interviews were transcribed and analyzed for thematic content using the constant comparative method. Setting: San Francisco Bay Area, California, USA. Subjects: 17 parents (14 mothers and 3 fathers) were recruited from a broader qualitative study on understanding the experiences of food insecurity in low-income families. Results: Four themes were identified from the parents’ photos and interviews. First, parents described multiple aspects of their food environment that promoted unhealthy eating behaviors. Second, parents shared strategies they employed to acquire food with limited resources. Third, parents expressed feelings of shame, guilt, and distress resulting from their experience of food insecurity. And finally, parents described treating their children to special foods to cultivate a sense of normalcy. Conclusions: Parents highlighted the external contributors and internal struggles of their experiences of food insecurity. Additional research to understand the experiences of the food-insecure families may help to improve nutrition interventions targeting this structurally vulnerable population.

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