scholarly journals Social-Emotional Aspects of Quality of Life in Multiple Sclerosis

2017 ◽  
Author(s):  
Heidemarie Lex ◽  
Sara Weisenbach ◽  
Jacob Sloane ◽  
Sana Syed ◽  
Eva Rasky ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Statistical Tests ◽  
Family Relations ◽  
Qualitative Interviews ◽  
Personal Characteristics ◽  
The United States ◽  
Structured Interviews ◽  
Social Emotional

Multiple sclerosis (MS) is an inflammatory auto-immune disease of the central nervous system. It leads to many impairments including physical, cognitive, psychological, and social challenges. Our study examined gender and cultural associations with quality of life (QoL), personal characteristics, and benefits from having MS among those with MS.The study was conducted in Austria and the United States. The sample included 128 participants, 64 in each country, of whom 78 were women and 50 were men aged between 20 and 57 years. We used standard statistical tests, including analyses of covariance (ANCOVA) and partial correlations for the analysis of quantitative data. For the qualitative part of the survey we used semi-structured interviews, which we transcribed and coded to identify categories in the answers for qualitative analyses.Austrian participants with MS perceived a higher social-emotional QoL in comparison to American participants. American participants expressed a higher self-esteem in comparison to Austrian participants. Men reported a lower ability to express love than women. Independent of sex/gender and nationality, participants reported benefits through the disease, especially with regard to improved compassion, mindfulness, improved family relations and lifestyle gains. The qualitative interviews revealed additional gender differences for coping with the illness; and in experiences, expectations, and challenges related to MS.These insights can be used to develop targeted psychological and social support interventions aimed toward improving social-emotional QoL for persons with MS.

scholarly journals Acceptability and Feasibility of a Mindfulness Intervention Delivered via Videoconferencing for People With Parkinson’s

2021 ◽  
pp. 089198872098890
Author(s):  
Angeliki Bogosian ◽  
Catherine S. Hurt ◽  
John V. Hindle ◽  
Lance M. McCracken ◽  
Debora A. Vasconcelos e Sa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cost Effectiveness ◽  
Qualitative Interviews ◽  
Quality Adjusted Life Year ◽  
Secondary Outcome ◽  
Structured Interviews ◽  
Potential Cost ◽  
Mindfulness Intervention ◽  
Related Quality

Mindfulness-based group therapy is a rapidly growing psychological approach that can potentially help people adjust to chronic illness and manage unpleasant symptoms. Emerging evidence suggests that mindfulness-based interventions may benefit people with Parkinson’s. The objective of the paper is to examine the appropriateness, feasibility, and potential cost-effectiveness of an online mindfulness intervention, designed to reduce anxiety and depression for people with Parkinson’s. We conducted a feasibility randomized control trial and qualitative interviews. Anxiety, depression, pain, insomnia, fatigue, impact on daily activities and health-related quality of life were measured at baseline, 4, 8, and 20 weeks. Semi-structured interviews were conducted at the end of the intervention. Participants were randomized to the Skype delivered mindfulness group (n = 30) or wait-list (n = 30). Participants in the mindfulness group were also given a mindfulness manual and a CD with mindfulness meditations. The intervention did not show any significant effects in the primary or secondary outcome measures. However, there was a significant increase in the quality of life measure. The incremental cost-effectiveness ratio was estimated to be £27,107 per Quality-Adjusted Life Year gained. Also, the qualitative study showed that mindfulness is a suitable and acceptable intervention. It appears feasible to run a trial delivering mindfulness through Skype, and people with Parkinson’s found the sessions acceptable and helpful.

scholarly journals “Kicking and Screaming” or “Gracefully Conceding”: Creative Nonfiction Stories of Aging With Multiple Sclerosis

2021 ◽  
pp. 104973232110098
Author(s):  
Emma V. Richardson ◽  
Robert W. Motl
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Older Adults ◽  
Knowledge Translation ◽  
Creative Nonfiction ◽  
Complex Phenomenon ◽  
Structured Interviews ◽  
Cognitive Dysfunctions ◽  
Positive Experiences

Aging with multiple sclerosis (MS) is a complex phenomenon. Some individuals report physical and cognitive dysfunctions regarding these combined experiences, whereas others report perceived improvements in quality of life. Beyond this, little is known regarding how people make sense of, and come to embody, negative or positive experiences of MS. Thus, our objectives were to (a) explore how people made sense of aging with MS and (b) present this in an artful, engaging, transformative way. To achieve this, we conducted 40 semi-structured interviews with older adults who had MS, analyzed data using pluralistic narrative analyses, and presented results through two creative nonfictions. We detail our process of creating the nonfictions before presenting the different stories of aging with MS, namely “Kicking and Screaming” and “Gracefully Conceding.” We then offer recommendations and implications for using these stories as knowledge translation devices, and further critique the limitations of these stories in practice.

scholarly journals A qualitative exploration of the experience and quality of life of patients, and their family carers, admitted to a specialist eye hospital with microbial keratitis

2020 ◽  
Author(s):  
Shelley Anne Tranter ◽  
Maria Cabreras-Aguas ◽  
Mandy Riddell ◽  
Joanna McCulloch ◽  
Therese Riley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Family Carers ◽  
Microbial Keratitis ◽  
Structured Interviews ◽  
Post Discharge ◽  
Convenience Sample ◽  
Family Work ◽  
Related Quality

Abstract Background: Microbial keratitis is a vision-threatening condition requiring intensive treatment. Understanding patients’ and carers’ experience during and after hospitalisation can inform improvements in care and outcomes. This study explored the vision-related quality of life, and the experiences of patients with microbial keratitis and their family carers when admitted to a quaternary referral eye hospital in AustraliaMethods: The study employed mixed methods, including qualitative interviews and a survey in hospital and a telephone interview post-discharge. A convenience sample was recruited of 33 patients with microbial keratitis who presented to hospital between March and October 2017, and 10 of their family carers. Semi-structured interviews were audiotaped, transcribed verbatim, coded and analysed using thematic analysis. Patient participants completed the National Eye Institute Visual Functioning Questionnaire – 25 (NEIVFQ-25).Results: Qualitative analyses identified two main themes: Saving sight, with subthemes of costs of saving sight, and travel and transportation; Safe-guarding home and normal life with subthemes of family, work and pastimes. A group mean NEIVFQ-25 score of 74 was similar to other ophthalmic disease groups but pain scores were higher.Conclusion: Findings provide insights into the experiences and often unspoken concerns of microbial keratitis patients and their family carers, revealing the priority and the associated costs of saving sight, and the implications for family and lifestyles. These patients reported similarly reduced vision-related quality of life but greater pain compared to other ophthalmic groups. Findings point to ways to improve their experience and potentially reduce the high rates of unplanned representations of this patient group.

scholarly journals MEANINGFUL ENGAGEMENT AND QUALITY OF LIFE AMONG ASSISTED LIVING RESIDENTS WITH DEMENTIA: EMERGENT FINDINGS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S943-S944
Author(s):  
Joy Ciofi ◽  
Candace L Kemp ◽  
Alexis A Bender ◽  
Elisabeth O Burgess ◽  
Jennifer C Morgan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Assisted Living ◽  
Personal Characteristics ◽  
Future Research ◽  
Structured Interviews ◽  
Care Partners ◽  
Meaningful Engagement ◽  
Physical Abilities ◽  
Community Staff

Abstract This poster provides an overview of the aims, methods, and emergent findings from an ongoing five-year NIA-funded project (R01AG062310) examining meaningful engagement and quality of life among assisted living (AL) residents with dementia. The overall goal of this project is to determine how opportunities for meaningful engagement can best be recognized, created, and maintained for individuals with different dementia types and varying levels of functional ability. Guided by grounded theory, this qualitative study will involve 12 diverse AL communities in and around Atlanta, Georgia, USA. Presently, our interdisciplinary team is collecting data in four communities using ethnographic observations, semi-structured interviews, and resident record review. We are studying daily life in each community, following 30 resident participants, and actively recruiting and interviewing their formal and informal care partners. Based on ongoing analysis, we offer key emergent findings. First, meaningful engagement is highly individualized and dynamic. Differing personal interests, along with wide variations in cognitive and physical abilities, can present challenges for AL community staff and other care partners when trying to recognize what constitutes meaningful engagement for residents. Second, multiple complex factors interplay to shape the experience of meaningful engagement among persons living with dementia, such as personal characteristics, care partner background and training, AL community design and philosophy, and state/corporate regulations. Finally, flexibility and ‘meeting the resident where they are at’ appear to be critical to identifying and fostering meaningful engagement for persons living with dementia. We discuss the implications of these preliminary findings for translation, dissemination, and future research.

scholarly journals Social-emotional aspects of quality of life in multiple sclerosis

2017 ◽  
Vol 23 (4) ◽  
pp. 411-423 ◽  
Author(s):  
Heidemarie Lex ◽  
Sara Weisenbach ◽  
Jacob Sloane ◽  
Sana Syed ◽  
Eva Rasky ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Social Emotional ◽  
Emotional Aspects

scholarly journals Quantitative and qualitative testing of DARWeb: An online self-guided intervention for children with functional abdominal pain and their parents

2018 ◽  
Vol 25 (4) ◽  
pp. 1511-1527 ◽  
Author(s):  
Rubén Nieto ◽  
Mercè Boixadós ◽  
Eulàlia Hernández ◽  
Imma Beneitez ◽  
Anna Huguet ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Abdominal Pain ◽  
Qualitative Interviews ◽  
Pain Severity ◽  
Structured Interviews ◽  
Functional Abdominal Pain ◽  
Parents And Children ◽  
Severity Scores ◽  
Quasi Experimental

The main objective of this study was to preliminary explore the effects of DARWeb on different outcomes. A Quasi-experimental, one-group, pretest–posttest design was used. Parents and children were asked to complete questionnaires and questions (separately) about quality of life, abdominal pain severity, and satisfaction. Semi-structured interviews with families were also performed. This study focuses on 17 families. Results showed that parent’s ratings of children’s abdominal pain severity were significantly lower after finishing the intervention and at the 3-month follow-up, and quality of life scores had increased significantly after 3 months. From children’s ratings, mean abdominal pain severity scores were significantly lower after the intervention compared to the preintervention assessment. Both parents and children were quite satisfied with the intervention. In qualitative interviews, families suggested that DARWeb helped them to give less importance to pain and to learn coping strategies. In conclusion, this study showed the potential usefulness of DARWeb for children with functional abdominal pain and for their parents.

scholarly journals A qualitative exploration of the experience and quality of life of patients, and their family carers, admitted to a specialist eye hospital with microbial keratitis

2019 ◽  
Author(s):  
Shelley Anne Tranter ◽  
Maria Careras-Aguas ◽  
Mandy Riddell ◽  
Joanna McCulloch ◽  
Therese Riley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Family Carers ◽  
Microbial Keratitis ◽  
Structured Interviews ◽  
Post Discharge ◽  
Convenience Sample ◽  
Family Work ◽  
Related Quality

Abstract Background Microbial keratitis is a vision-threatening condition requiring intensive treatment. Understanding patients’ and carers’ experience during and after hospitalisation can inform improvements in care and outcomes. This study explored the vision-related quality of life, and the experiences of patients with microbial keratitis and their family carers when admitted to a quaternary referral eye hospital in Australia Methods The study employed mixed methods, including qualitative interviews and a survey in hospital and a telephone interview post-discharge. A convenience sample was recruited of 33 patients with microbial keratitis who presented to hospital between March and October 2017, and 10 of their family carers. Semi-structured interviews were audiotaped, transcribed verbatim, coded and analysed using thematic analysis. Patient participants completed the National Eye Institute Visual Functioning Questionnaire – 25 (NEIVFQ-25). Results Qualitative analyses identified two main themes: Saving sight, with subthemes of costs of saving sight, and travel and transportation; Safe-guarding home and normal life with subthemes of family, work and pastimes. A group mean NEIVFQ-25 score of 74 was similar to other ophthalmic disease groups but pain scores were higher. Conclusion Findings provide insights into the experiences and often unspoken concerns of microbial keratitis patients and their family carers, revealing the priority and the associated costs of saving sight, and the implications for family and lifestyles. These patients reported similarly reduced vision-related quality of life but greater pain compared to other ophthalmic groups. Findings point to ways to improve their experience and potentially reduce the high rates of unplanned representations of this patient group.

scholarly journals Associations between Mindfulness, Executive Function, Social-Emotional Skills, and Quality of Life among Hispanic Children

2020 ◽  
Vol 17 (21) ◽  
pp. 7796
Author(s):  
Chien-Chung Huang ◽  
Shuang Lu ◽  
Juan Rios ◽  
Yafan Chen ◽  
Marci Stringham ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Executive Function ◽  
Well Being ◽  
The United States ◽  
Equation Modeling ◽  
Hispanic Children ◽  
Social Emotional ◽  
Emotional Skills ◽  
Structure Equation Modeling

Hispanic children constitute the largest ethnic minority in the United States of America, and yet few studies examine the relationship between mindfulness and Hispanic children’s quality of life. This 2018 study seeks to gain insight into how mindfulness is associated with Hispanic children’s quality of life. We surveyed 96 children in 5th- and 6th-grade classes in three Northern New Jersey elementary schools in 2018. Structure Equation Modeling was used to examine the associations between mindfulness, executive function, social-emotional skills, and quality of life. The results indicate that mindfulness is significantly and directly associated with executive function (β = 0.53), and that executive function is positively associated with social-emotional skills (β = 0.54) and quality of life (β = 0.51) of the sampled Hispanic children. The total effects on quality of life are significant for mindfulness (β = 0.33), executive function (β = 0.62), and social-emotional skills (β = 0.20). The findings shed light upon factors that can affect Hispanic children’s quality of life and call for interventions related to these factors in order to improve their well-being.

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