Perceived Effects of Neuropsychiatric Symptoms on Functional Status in Early-stage Huntington Disease

2021 ◽  
pp. 019394592199254
Author(s):  
Jessie S. Gibson ◽  
Bethany A. Rhoten ◽  
Sheila H. Ridner ◽  
Daniel O. Claassen
Keyword(s):  
Functional Status ◽  
Huntington Disease ◽  
Social Withdrawal ◽  
Early Stage ◽  
Neuropsychiatric Symptoms ◽  
Daily Activities ◽  
Structured Interviews ◽  
Negative Effects ◽  
Perceived Effects ◽  
Improved Function

Neuropsychiatric symptoms in Huntington disease (HD) are commonly encountered, but their effects on functional status are poorly understood. In this qualitative study guided by the Theory of Unpleasant Symptoms, 15 HD patients and caregivers completed semi-structured interviews regarding perceived effects of neuropsychiatric symptoms on functional status. Physical, cognitive, and social functional effects were reported, with negative effects on daily activities and social withdrawal being reported by the greatest number of subjects. Participants also reported improved function with intervention for neuropsychiatric symptoms. This study provides a novel description of the lived experiences of HD patients with neuropsychiatric symptoms.

scholarly journals A Narrative Evaluation of a Grief Support Camp for Families Affected by a Parent's Suicide

2021 ◽  
Vol 12 ◽  
Author(s):  
Anneli Silvén Hagström
Keyword(s):  
Low Cost ◽  
Structured Interviews ◽  
Negative Effects ◽  
Non Profit ◽  
Self Blame ◽  
Grief Support ◽  
Perceived Effects ◽  
Psychological Processing ◽  
Traditional Approaches ◽  
Narrative Evaluation

Background: Children of parents who suffer mental ill-health and die by suicide are vulnerable to developing psychological and social problems themselves; they also have a severely elevated risk of dying at a young age – particularly through suicide. This highlights the need to design supportive measures that can counteract such negative developments after a parent's suicide.Aim: This narrative evaluation of a grief support camp for families affected by a parent's suicide arranged by the non-profit organization Children's Rights in Society in Sweden investigates whether children [N = 11] and parents [N = 11] perceived their participation as meaningful and, if so, in what way, and the changes to which the program was said to have contributed.Methods: Family members were invited to reflect on their experiences in narratively structured interviews that took place 18 months after participation. Their narrated experiences were analyzed to examine how the program was integrated into their biographies and with what significance. Narratives of change were identified in particular in order to grasp the self-perceived effects of participation.Results: Both children and parents attributed major significance to their encounters with other suicide bereaved. This led to support exchange and normalization, which countered a perceived “suicide stigma” in everyday life. Help to narratively construct destigmatizing understandings of suicide was also said to have relieved self-blame and shame. Overall, the participants described changes in the form of a better-informed position in grief, increased manageability and enhanced family communication. The parents also reported improved ability to support their children and a more hopeful view of life ahead.Conclusion: The evaluation showcases how this psychoeducational intervention, at a relatively low cost compared to traditional approaches, has great potential to lessen the negative effects of a suicide in the family by assisting families with psychological processing and de-stigmatization. Parental resources are also strengthened, which can serve as continuing support for the children.

scholarly journals Effectiveness of a Family Support Intervention on Caregiving Burden in Family of Elderly Patients With Cognitive Decline After the COVID-19 Lockdown

2021 ◽  
Vol 12 ◽  
Author(s):  
Luca Cravello ◽  
Eleonora Martini ◽  
Niccolò Viti ◽  
Cristina Campanello ◽  
Francesca Assogna ◽  
...  
Keyword(s):  
Cognitive Decline ◽  
Functional Status ◽  
Family Support ◽  
Neuropsychiatric Symptoms ◽  
Community Resources ◽  
Negative Effects ◽  
Support Intervention ◽  
Caregiving Burden ◽  
Before And After ◽  
State Examination

Background: The coronavirus disease 2019 (COVID-19) pandemic had a great impact on patients with cognitive decline or dementia. The lockdown period may exacerbate behavioral disorders and worsen distress of caregivers. The aim of this study is to evaluate the effectiveness of a family support intervention on the negative effects that the COVID-19 lockdown may have on patients and related caregivers.Methods: We recruited patients whose related caregivers had attended a family support course before the COVID-19 lockdown. The course was for family members of patients with cognitive decline or dementia and consisted in eight meetings during which the participants received information about the disease, the management of neuropsychiatric symptoms, and community resources and services available for patients with dementia. Data on cognitive decline, neuropsychiatric symptoms, and functional status had been collected before the course with the Mini-Mental State Examination (MMSE), the Neuropsychiatric Inventory (NPI), and the Instrumental (IADL) and Basic (BADL) Activities of Daily Living scales, respectively. The caregiving burden had been evaluated at the end of the course by means of the Zarit Burden Interview (ZBI). After the COVID-19 lockdown, a phone interview was made to compare neuropsychiatric symptoms, functional status, and caregiver's burden with the previous evaluation.Results: There were no significant changes before and after the COVID-19 lockdown in the mean NPI score. The IADL, BADL, and ZBI scores were significantly lower after lockdown than before. The BADL scores were inversely associated with ZBI scores. Thus, despite a worsening of patients' functional status, the caregivers' burden decreased significantly probably due to the positive effect of the family support intervention.Conclusions: Our study demonstrated that a complete family support intervention for caregivers of patients with cognitive decline or dementia can reduce the burden of care even in a particular negative period, such as the COVID-19 lockdown.

scholarly journals Role of the family in children's remote learning experiences during the COVID-19 outbreak: Kazakhstan and Hungary

2021 ◽  
Vol 24 (2) ◽  
pp. 237-258
Author(s):  
Assel Csonka-Stambekova
Keyword(s):  
Early Stage ◽  
Economic Status ◽  
Home Schooling ◽  
Occupational Status ◽  
Learning Experiences ◽  
Educational Background ◽  
Structured Interviews ◽  
Negative Effects ◽  
Residential Characteristics ◽  
Remote Learning

The COVID-19 outbreak forced schools around the globe to close. As a result, home became the dominant learning environment and family members became educational providers for students. Research to date demonstrates that families responded differently to the challenges related to remote learning and demonstrated various responses in their new responsible roles. Furthermore, research from the initial phases of COVID-19 shows that families' socio-economic status and educational background are related to children's remote learning experiences. This study seeks to explain and advance our understanding of the participants' remote learning experiences in the early stage of COVID-19 through the analysis of three Kazakhstani and three Hungarian families. The families have different backgrounds, including the language they speak, their residential characteristics, parents' educational attainment, and occupational status. The author conducted semi-structured interviews with parents from Kazakhstan and Hungary via Zoom. Qualitative directed content analysis was employed to analyse the collected data. The results of this study indicate that: a) parents had to become teachers in addition to their primary caregiver roles, thus balancing parenting and home-schooling; b) children's learning opportunities and losses during the COVID-19 outbreak are linked to families' socioeconomic status; and c) some families found it difficult to support their children due to their lack of pedagogical and content knowledge. Therefore, it can be concluded that existing social and educational inequalities in Kazakhstan and Hungary may have long-lasting negative effects on the children who did not experience high levels of parental involvement in their remote education.

Study-work-life balance of international students in the context of temporal boundaries

2019 ◽  
Vol 7 (2) ◽  
pp. 63-79
Author(s):  
Megan O'Mahony ◽  
Debora Jeske
Keyword(s):  
International Students ◽  
Social Withdrawal ◽  
Work Life ◽  
Work Life Balance ◽  
Boundary Management ◽  
Structured Interviews ◽  
Time Zone ◽  
Life Balance ◽  
Postgraduate Students ◽  
Personal Challenges

The goal of this qualitative study was to examine the experience of study-work-life balance among international students who were separated from their family both geographically and temporally. Using 10 semi-structured interviews with postgraduate students and thematic analysis, several themes were identified. These included boundary management shifts due to study/work demands and time zone differences. In addition, students reported social and personal challenges (in terms of family’s expectations, relationships maintenance, socialization in host country). Temporal boundaries contributed to social withdrawal and isolation among students, many of which were heavily reliant on their own family network for support. The findings strengthen the argument that time difference impacts the boundary management and social experience of international students.

A design contribution to the entrepreneurial experience

2019 ◽  
Vol 2 (1) ◽  
Author(s):  
Juan David ROLDAN ACEVEDO ◽  
Ida TELALBASIC
Keyword(s):  
Product Development ◽  
Qualitative Analysis ◽  
Design Research ◽  
Recent Literature ◽  
Early Stage ◽  
Entrepreneurial Activity ◽  
Value Proposition ◽  
Structured Interviews ◽  
User Centric ◽  
Constant Growth

In recent history, different design approaches have been entering fields like management and strategy to improve product development and service delivery. Specifically, entrepreneurship has adopted a user-centric mindset in methodologies like the business canvas model and the value proposition canvas which increases the awareness of the users’ needs when developing solutions. What happens when a service design approach is used to understand the entrepreneurs’ experience through the creation of their startups? Recent literature suggests that entrepreneurial activity and success is conditioned by their local entrepreneurship ecosystem. This study investigates the Entrepreneurship Ecosystem of Medellín, Colombia - an ecosystem in constant growth but that lacks qualitative analysis. The sample consists of 12 entrepreneurs in early-stage phase. The data was gathered with two design research methods: Cultural Probes and Semi-structured interviews. The analysis of the information collected facilitated the development of 4 insights about the entrepreneurs and an experience map to visualise and interpret their journey to create a startup. The results of this study reflected the implications of the ecosystem, the explanation of the users’ perceptions and awareness and propose a set of ideas to the local government to improve the experience of undertaking a startup in Medellín.

Care for delirium superimposed on dementia at an early stage

2020 ◽  
Keyword(s):  
Behavioral Problems ◽  
Healthcare Professionals ◽  
Early Stage ◽  
Good Care ◽  
Structured Interviews ◽  
Ethical Considerations ◽  
Appropriate Care ◽  
Adequate Care ◽  
Insight Into ◽  
Delirium Superimposed On Dementia

Delirium is a common serious complication in dementia that is associated with poor prognosis and a high burden on caregivers and healthcare professionals. Appropriate care is therefore important at an early stage for patients with delirium superimposed on dementia To gain insight into the care of six patients with delirium superimposed on dementia, 19 semi-structured interviews were conducted focused on the experiences of caregivers and professionals. The interviews revealed four themes that appeared to play a role: 1. experiences with and views on behavioral problems of these patients, 2. recognition and diagnosis of delirium in dementia, 3. views on good care and 4. organizational aspects. Knowledge gaps about delirium in dementia, as well as ethical considerations, play an important role in organizing timely and adequate care for patients with delirium superimposed on dementia.

scholarly journals Can Watching Online Videos Be Addictive? A Qualitative Exploration of Online Video Watching among Chinese Young Adults

2021 ◽  
Vol 18 (14) ◽  
pp. 7247
Author(s):  
Zeyang Yang ◽  
Mark Griffiths ◽  
Zhihao Yan ◽  
Wenting Xu
Keyword(s):  
Social Interaction ◽  
Short Form ◽  
Leisure Activity ◽  
Online Video ◽  
Video Content ◽  
Structured Interviews ◽  
Negative Effects ◽  
Online Videos ◽  
Chinese Young Adults ◽  
Qualitative Exploration

Watching online videos (including short-form videos) has become the most popular leisure activity in China. However, a few studies have reported the potential negative effects of online video watching behaviors (including the potential for ‘addiction’) among a minority of individuals. The present study investigated online video watching behaviors, motivational factors for watching online videos, and potentially addictive indicators of watching online videos. Semi-structured interviews were conducted among 20 young Chinese adults. Qualitative data were analyzed using thematic analysis. Eight themes were identified comprising: (i) content is key; (ii) types of online video watching; (iii) platform function hooks; (iv) personal interests; (v) watching becoming habitual; (vi) social interaction needs; (vii) reassurance needs; and (viii) addiction-like symptoms. Specific video content (e.g., mukbang, pornography), platform-driven continuous watching, and short-form videos were perceived by some participants as being potentially addictive. Specific features or content on Chinese online video platforms (e.g., ‘Danmu’ scrolling comments) need further investigation. Future studies should explore users’ addictive-like behaviors in relation to specific types of online video content and their social interaction on these platforms.

scholarly journals Medication of Hydroxychloroquine, Remdesivir and Convalescent Plasma during the COVID-19 Pandemic in Germany—An Ethical Analysis

2021 ◽  
Vol 18 (11) ◽  
pp. 5685
Author(s):  
Katja Voit ◽  
Cristian Timmermann ◽  
Florian Steger
Keyword(s):  
Early Stage ◽  
Treatment Options ◽  
Drug Distribution ◽  
Experimental Treatment ◽  
Ethical Analysis ◽  
Ethical Principles ◽  
Ethical Challenges ◽  
Ethical Guidelines ◽  
Negative Effects ◽  
Experimental Drug

This paper aims to analyze the ethical challenges in experimental drug use during the early stage of the COVID-19 pandemic, using Germany as a case study. In Germany uniform ethical guidelines were available early on nationwide, which was considered as desirable by other states to reduce uncertainties and convey a message of unity. The purpose of this ethical analysis is to assist the preparation of future guidelines on the use of medicines during public health emergencies. The use of hydroxychloroquine, remdesivir and COVID-19 convalescent plasma in clinical settings was analyzed from the perspective of the ethical principles of beneficence, non-maleficence, justice and autonomy. We observed that drug safety and drug distribution during the pandemic affects all four ethical principles. We therefore recommend to establish ethical guidelines (i) to discuss experimental treatment options with patients from all population groups who are in urgent need, (ii) to facilitate the recording of patient reactions to drugs in off-label use, (iii) to expand inclusion criteria for clinical studies to avoid missing potentially negative effects on excluded groups, and (iv) to maintain sufficient access to repurposed drugs for patients with prior conditions.

scholarly journals Identifying a space for young Black Muslim women in contemporary Britain

Ethnicities ◽  
2021 ◽  
pp. 146879682110018
Author(s):  
Sheymaa Ali Nurein ◽  
Humera Iqbal
Keyword(s):  
Black Community ◽  
Muslim Women ◽  
Structured Interviews ◽  
Negative Effects ◽  
Race And Gender ◽  
The United Kingdom ◽  
Different Dimensions ◽  
And Gender ◽  
Black Muslim ◽  
And Coping

Young Black Muslim Women (BMW) have complex, intersectional identities and exist at the margins of various identity groupings. Given this, members of the community can face societal relegation across, not only race and gender lines, but across religious ones, too. This paper explores the lived experiences of intragroup discrimination, identity and belonging in 11 young Black Muslim Women in the United Kingdom. In-depth, semi-structured interviews were conducted with participants and thematically analysed through the lens of intersectionality. The use of an intersectional framework facilitated an understanding of the manner in which the sample was multiply marginalised. Two key themes emerged from the interviews: firstly, around experiences of intragroup and intersectional discrimination and, secondly, around the challenges of responding to and coping with the negative effects of such discrimination. Participants discussed the cross-cutting nature through which they faced discrimination: from within the Black community; from within the Muslim community; and as a result of their gender. The non-exclusivity of these three identities result in constant encounters of discrimination along different dimensions to their personal identity. They also developed diverse means of coping with this marginalisation including drawing from religious beliefs and mobile identifications, i.e. performing different aspects of their identities in different contexts. The present study contributes to existing knowledge in its focus on an under-researched group and emphasises the negative effects of intragroup discrimination. The paper importantly highlights the diversity within the Black community and considers the (in)visibility of Black Muslim Women within society.

scholarly journals The Experiences of Grief and Personal Growth in University Students: A Qualitative Study

2021 ◽  
Vol 18 (4) ◽  
pp. 1899
Author(s):  
Jovita Tan ◽  
Karl Andriessen
Keyword(s):  
University Students ◽  
Emerging Adults ◽  
Personal Growth ◽  
Lessons Learned ◽  
Continuing Bonds ◽  
Structured Interviews ◽  
Supportive Services ◽  
Negative Effects ◽  
Positive Effects ◽  
Formal Services

Background: Experiencing the death of a close person, especially in emerging adults and students, can have profound effects on the bereaved individual’s life. As most research in this field has focused on negative effects of a loss, little is known about potential positive effects experienced by bereaved university students. This study investigated the experience of grief and personal growth in a sample of students from The University of Melbourne, Australia. Methods: Semi-structured interviews via Zoom/telephone with bereaved students (n = 14), who were invited to reflect on their loss and any personal growth potentially experienced. Thematic analysis of the data was based on a deductive and inductive approach. Results: The analysis identified four themes: (i) sharing of grief as a coping mechanism, (ii) balance between grief reactions and moving forward in life, (iii) lessons learned and personal growth, and (iv) adopting values from the deceased person and continuing bonds. Conclusions: Participants emphasized personal growth regarding self-perception and philosophical views on life. Following the loss, they preferred peer support, and used formal services only when they had a specific need. The findings indicate the importance of social support for bereaved students, and the complimentary role of peer and professional support. Hence, academic institutions should offer supportive services tailored to both students and professionals to help bereaved students.

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