Improving quality of life in patients with Huntington’s disease through music therapy: A qualitative explorative study using focus group discussions

2017 ◽  
Vol 27 (1) ◽  
pp. 44-66 ◽  
Author(s):  
Monique van Bruggen-Rufi ◽  
Annemieke Vink ◽  
Wilco Achterberg ◽  
Raymund Roos
Keyword(s):  
Quality Of Life ◽  
Focus Group ◽  
Music Therapy ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Focus Group Discussions ◽  
Group Discussions ◽  
Explorative Study

scholarly journals Development and evaluation of a physical activity intervention informed by participatory research- a feasibility study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Rathi Ramji ◽  
Elisabeth Carlson ◽  
Anders Kottorp ◽  
Sergey Shleev ◽  
Eman Awad ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Focus Group ◽  
Intervention Program ◽  
Physical Activity Intervention ◽  
Focus Group Discussions ◽  
Group Discussions ◽  
Socially Disadvantaged ◽  
Health Parameters

Abstract Background Despite numerous interventions aiming to improve physical activity in socially disadvantaged populations, physical inactivity remains to be a rising challenge to public health globally, as well as, in Sweden. In an effort to address this challenge, a community-based participatory intervention was developed through active community engagement and implemented in a socially disadvantaged neighborhood in Sweden. The current study aims to present the development and initial evaluation of a participatory research driven physical activity intervention. Methods Fifteen participants (11 females and 4 males) aged 17–59 years volunteered to participate in the physical activity intervention program. The intervention program was evaluated using a longitudinal mixed methods design measuring health impact changes over time through focus group discussions and quality of life surveys. Further additional biomedical health parameters such as levels of glycosylated hemoglobin, blood pressure, levels of oxygen saturation and body mass index were monitored before and after the intervention. Focus group data were analyzed using content analysis with an inductive approach. The pre-and post-test scores from the survey-based quality of life domains, as well as the health parameters were compared using non-parametric and parametric statistics. Results Four themes emerged from the analysis of the focus group discussions including sense of fellowship, striving for inclusion and equity, changing the learner perspective and health beyond illness. The scores for the domains Physical Health, Psychological Health, Social Relationships and Health Satisfaction where significantly higher after participation in the physical activity intervention program compared to the pre-test scores (p < .05)s. There were however, no significant changes in the scores for the environmental domain and overall quality of life after intervention compared to that prior to intervention start. Overall, the biomedical health parameters remained stable within the normal ranges during intervention. Conclusion The focus group discussions and results from the surveys and biomedical measures reveal important findings to understand and further develop the intervention program to promote health equity among citizens in disadvantaged areas. Evaluating the feasibility of such an intervention using multiple approaches contributes to effective implementation of it for larger communities in need.

scholarly journals UNDERSTANDING THE NEIGHBOURHOOD CHOICE DECISIONS OF MOVERS: AN ANALYSIS OF FOCUS GROUP DISCUSSIONS

2015 ◽  
Vol 76 (14) ◽  
Author(s):  
Zahid Sultan ◽  
Mehdi Moeinaddini ◽  
Zohreh Asadi-Shekari ◽  
Muhammad Zaly Shah
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Land Use ◽  
Focus Group ◽  
Qualitative Methods ◽  
Improve Quality ◽  
Key Factors ◽  
Focus Group Discussions ◽  
Group Discussions

Using a qualitative methods approach, this study explores the key factors that influence household neighbourhood choice. Three newly developed residential neighbourhoods have been studied to examine resident decision making around their neighbourhood preferences. Four focus group (n = 4) discussions with 29 individuals who were recent movers to the study areas were conducted to examine the reasons behind neighbourhood choice and the needs of the household. The results revealed that household neighbourhood choice decisions were multi-faceted and complex. The key findings can be classified into six categories: safety, residential environment, neighbourhood facilities, accessibility, economic and demographic factors. Residents emphasised that the combination of land-use and transportation planning may be one important part of multi-layered solutions to improve quality of life in residential neighbourhoods. 

scholarly journals Enhancing Quality of Life through Singing: A Music Therapy Study into Huntington’s Disease

2021 ◽  
Author(s):  
◽  
Sacha Van Beek
Keyword(s):  
Quality Of Life ◽  
Music Therapy ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Research Question ◽  
Data Sources ◽  
Residential Home ◽  
Structured Interviews ◽  
Clinical Notes

<p>This mixed methods study investigated whether the process of singing in music therapy can enhance the quality of life of patients with Huntington’s Disease. It took place in New Zealand, over a two-month period, in a residential home dedicated to the rare condition. The research involved five participants: two residents diagnosed with Huntington’s Disease who participated in individual music therapy sessions, two caregivers at the facility, and the music therapy student (MTS). The study endeavoured to answer the research question by triangulating three data sources. Data sources included; the MTS’s clinical notes of the sessions, semi-structured interviews with the staff members and a short questionnaire developed by the researcher which involved gathering the personal self-rated scores from the resident participants. A thematic analysis was undertaken with the two text-based data sources (clinical notes and interview transcripts) and the questionnaire scores were collated for each case. However the questionnaire results were deemed predominantly invalid. The triangulation of findings found that participants observed the process of singing had contributed to areas of quality of life for both of the residents, by providing them with: 1) a stimulus for socialisation; 2) emotional and psychological support; and 3) support for their remaining cognitive and physical ability. The outcome of the study found that the process of singing stimulated the resident participants in two contrasting ways and their motivation to participate was not only the singing itself but also the music in the session, instrumental play and the relationship between the residents and the MTS. From the perspectives of the participants consulted in this study it was concluded that the results from this research added some rich detail to the current literature available. Findings also concluded that residents, caregivers and the MTS herself valued the process of singing in music therapy and regarded it as an important intervention when seeking to preserve the quality of life of Huntington’s patients.</p>

scholarly journals Improving Information and Support for Metastatic Breast Cancer in Nigeria

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 102s-102s
Author(s):  
C. Asuzu ◽  
E. Akin-Odanye ◽  
A. Ntekim ◽  
A. Ogundiran ◽  
M. Asuzu ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Developing Countries ◽  
Metastatic Breast Cancer ◽  
Focus Group ◽  
Cancer Patients ◽  
Metastatic Breast ◽  
Focus Group Discussions ◽  
Group Discussions

Background: Breast cancer is a global health problem of the 21th century. In developing countries, it is the third most common cause of death after infectious, parasitic, and cardiovascular diseases. Experience of late stage cancer carries a high emotional burden, due to poor outcomes and lack of comprehensive care. Currently in Nigeria, most cancer patients are looked after almost solely by their primary clinical oncologists, with minimal psychological and social care. There is a great need to broaden the care to include the psychosocial component now, considered a priority in clinical practice guidelines worldwide. Aim: To assess distress levels and improve quality of life of metastatic breast cancer patients through a continued support group system and psychotherapy. Produce field-tested audio-visual community education, psychosocial support and advocacy materials aimed at improving early diagnosis and reducing breast cancer death. Methods: This is a mixed-methods design study including a prepost design and qualitative focus group discussions. The study will enroll all consecutive patients in advanced stages 3 and 4 of their illness who consent to be included in the study until the estimated sample size of about 100 for the given period of the study is attained. The knowledge and attitude questionnaires, quality of life instruments as well as the distress thermometer will be administered to the patients to ascertain both their levels at baseline presentation as well as identify those who may benefit from psychotherapy. The eligible (stage 3 and 4) patients will be exposed to group psychosocial supportive interventions for three months before reassessment of the baseline parameters to ascertain the value of these interventions for the patients. Breast cancer education tools will be developed during the group interactions and construct validated with nonbreast cancer patients in the community. Results from focus group discussions will be used to triangulate the findings from the other aspects of the study. Data will be analyzed both descriptively and inferentially. Results: Progress to date includes obtaining ethical committee approval for the study protocol with the registration number NHREC/05/01/2008a from the UI/UCH Joint Research Ethics Committee. The research nurses have been trained in distress assessment. Their sociodemographic characteristics, knowledge and attitudes in regard of cancer, distress states, effects of the various psychological and social interventions on the patients and advocacy tools from the group therapy will be the products of this research. Conclusion: The results of this work will be used to advance cancer care and promote advocacy in the UCH and other similar cancer care settings in Nigeria and other developing countries.

scholarly journals Enhancing Quality of Life through Singing: A Music Therapy Study into Huntington’s Disease

2021 ◽  
Author(s):  
◽  
Sacha Van Beek
Keyword(s):  
Quality Of Life ◽  
Music Therapy ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Research Question ◽  
Data Sources ◽  
Residential Home ◽  
Structured Interviews ◽  
Clinical Notes

<p>This mixed methods study investigated whether the process of singing in music therapy can enhance the quality of life of patients with Huntington’s Disease. It took place in New Zealand, over a two-month period, in a residential home dedicated to the rare condition. The research involved five participants: two residents diagnosed with Huntington’s Disease who participated in individual music therapy sessions, two caregivers at the facility, and the music therapy student (MTS). The study endeavoured to answer the research question by triangulating three data sources. Data sources included; the MTS’s clinical notes of the sessions, semi-structured interviews with the staff members and a short questionnaire developed by the researcher which involved gathering the personal self-rated scores from the resident participants. A thematic analysis was undertaken with the two text-based data sources (clinical notes and interview transcripts) and the questionnaire scores were collated for each case. However the questionnaire results were deemed predominantly invalid. The triangulation of findings found that participants observed the process of singing had contributed to areas of quality of life for both of the residents, by providing them with: 1) a stimulus for socialisation; 2) emotional and psychological support; and 3) support for their remaining cognitive and physical ability. The outcome of the study found that the process of singing stimulated the resident participants in two contrasting ways and their motivation to participate was not only the singing itself but also the music in the session, instrumental play and the relationship between the residents and the MTS. From the perspectives of the participants consulted in this study it was concluded that the results from this research added some rich detail to the current literature available. Findings also concluded that residents, caregivers and the MTS herself valued the process of singing in music therapy and regarded it as an important intervention when seeking to preserve the quality of life of Huntington’s patients.</p>

J11 Can Music Therapy Improve The Quality Of Life In Huntington's Disease?

2014 ◽  
Vol 85 (Suppl 1) ◽  
pp. A68-A69
Author(s):  
M. van Bruggen-Rufi ◽  
R. Roos ◽  
W. Achterberg ◽  
A. Vink
Keyword(s):  
Quality Of Life ◽  
Music Therapy ◽  
Huntington's Disease ◽  
Huntington’S Disease

scholarly journals Nairobi Early Childcare in Slums (NECS) Study Protocol: a mixed-methods exploration of paid early childcare in Mukuru slum, Nairobi

2020 ◽  
Vol 4 (1) ◽  
pp. e000822
Author(s):  
Robert C Hughes ◽  
Patricia Kitsao-Wekulo ◽  
Sunil Bhopal ◽  
Elizabeth W Kimani-Murage ◽  
Zelee Hill ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Focus Group ◽  
Early Years ◽  
Epidemiological Methods ◽  
Focus Group Discussions ◽  
Group Discussions ◽  
Early Childcare ◽  
Depth Interviews ◽  
Childcare Providers

IntroductionThe early years are critical. Early nurturing care can lay the foundation for human capital accumulation with lifelong benefits. Conversely, early adversity undermines brain development, learning and future earning.Slums are among the most challenging places to spend those early years and are difficult places to care for a child. Shifting family and work structures mean that paid, largely informal, childcare seems to be becoming the ‘new normal’ for many preschool children growing up in rapidly urbanising Africa. However, little is known about the quality of this childcare.AimsTo build a rigorous understanding what childcare strategies are used and why in a typical Nairobi slum, with a particular focus on provision and quality of paid childcare. Through this, to inform evaluation of quality and design and implementation of interventions with the potential to reach some of the most vulnerable children at the most critical time in the life course.Methods and analysisMixed methods will be employed. Qualitative research (in-depth interviews and focus group discussions) with parents/carers will explore need for and decision-making about childcare. A household survey (of 480 households) will estimate the use of different childcare strategies by parents/carers and associated parent/carer characteristics. Subsequently, childcare providers will be mapped and surveyed to document and assess quality of current paid childcare. Semistructured observations will augment self-reported quality with observable characteristics/practices. Finally, in-depth interviews and focus group discussions with childcare providers will explore their behaviours and motivations. Qualitative data will be analysed through thematic analysis and triangulation across methods. Quantitative and spatial data will be analysed through epidemiological methods (random effects regression modelling and spatial statistics).Ethics and disseminationEthical approval has been granted in the UK and Kenya. Findings will be disseminated through journal publications, community and government stakeholder workshops, policy briefs and social media content.

scholarly journals Management of Traumatic Ulcerations of Lips in a Case of Huntington’s Disease: A Novel Application of Essix Retainer

2021 ◽  
pp. 030157422110234
Author(s):  
Mohamed Iqbal J
Keyword(s):  
Quality Of Life ◽  
Characteristic Feature ◽  
Neurodegenerative Disease ◽  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Complete Resolution ◽  
Psychiatric Symptoms

Huntington’s disease is a progressive neurodegenerative disease characterized by motor, cognitive, and psychiatric symptoms. Dystonia of muscles is a characteristic feature of this condition. A case of Huntington’s disease, with orofacial dystonia, leading to severe uncontrolled biting of the lips, was referred by the Department of Neurology. Deep traumatic ulcerations were found in both upper and lower lips. A simple Essix retainer was fabricated and inserted, which acted as a barrier for the teeth from injuring the lips. The ulcers showed complete resolution in 3 to 4 weeks. The vacuum-formed retainers resulted in a good fit and resisted removal by the uncontrolled contortions of the orofacial muscles. The Essix retainer can be effectively used in improving the quality of life of patients, with Huntington’s disease, having such dystonia-related injuries to lips.

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