Virtual Dementia Tour®: limitations and ethics

2018 ◽  
Vol 19 (2) ◽  
pp. 146-155 ◽  
Author(s):  
Alessandra Merizzi
Keyword(s):  
Quality Of Life ◽  
Clinical Excellence ◽  
Evidence Base ◽  
Standards Of Care ◽  
Original Research ◽  
Evidence Based ◽  
Supporting Evidence ◽  
National Guidelines ◽  
Content Type

Purpose Dementia care is an important aspect affecting the quality of life of people living with dementia. There are many studies that test the efficacy of methods of care in order to support and even increase the quality of life of dementia patients (e.g. Gridley et al., 2016; Thyrian et al., 2017). A novel approach developed by Beville (2002) called Virtual Dementia Tour® (VDT®) also aims to improve the care of people living with dementia in their middle and late stages of deterioration. VDT® is now becoming popular internationally (see www.provdt.co.uk/) and it is sold to the general public as an evidence-based method through which people can experience what it is like to live with dementia, aiming to increase empathy and improve the delivery of care. The purpose of this paper is to explore the validity of the VDT® intervention. Design/methodology/approach The author explores the original research article upon which the VDT® was developed, highlighting critical points and reviewing these through a rigorous selection of references. Findings The supporting evidence base is consistently weak on closer scrutiny, and in combination with anecdotal evidence of distress related to the VDT® experience, this analysis suggests a need for caution in implementation. Originality/value Although high-quality standards of care from the national guidelines (National Institute for Health and Clinical Excellence, 2010) ensure that health services implement evidence-based interventions, it may be important to discern that which is empirically based from that which is not.

A process to evaluate an iTV platform to enhance seniors’ access to information about public and social services

2018 ◽  
Vol 22 (4) ◽  
pp. 224-233
Author(s):  
Telmo Silva ◽  
Hilma Caravau ◽  
Liliana Reis ◽  
David Campelo
Keyword(s):  
Quality Of Life ◽  
Social Services ◽  
Questionnaire Survey ◽  
Care Center ◽  
Innovative Technology ◽  
Original Research ◽  
Content Type ◽  
Blind Review ◽  
Key Aspects

Purpose The purpose of this paper is to present a process to evaluate the usability and usefulness of a high-fidelity prototype of the +TV4E platform (removed for blind review), an iTV service which aims to promote the info-inclusion and quality of life of Portuguese seniors by delivering informative contents about public and social services. Design/methodology/approach The research presented in this study is qualitative and uses an inclusive and participatory co-design process involving seniors to evaluate usability of an iTV service with support of the Post-Study System Usability Questionnaire (PSSUQ) tool and a questionnaire survey. The participants were 11 individuals, over 65 years enrolled in an adult day care center in Aveiro city, Portugal (removed for blind review). Findings Findings from this study allowed to assess some key aspects in the +TV4E platform implementation that should be addressed in its final version. Using the PSSUQ tool as well as a questionnaire survey confirmed the relevance of this platform to meet seniors’ informational needs. Originality/value This original research offers insights on how valuable is including potential users in the development and test phases of an innovative technology which intends to offer more adequate tools to improve seniors’ info-inclusion and quality of life. Also, it is possible to understand what should be considered when evaluating a prototype intended to be used by seniors.

Misophonia: An Evidence-Based Case Report

2020 ◽  
Vol 29 (4) ◽  
pp. 685-690
Author(s):  
C. S. Vanaja ◽  
Miriam Soni Abigail
Keyword(s):  
Quality Of Life ◽  
Case Report ◽  
Case History ◽  
Pure Tone ◽  
Physiological Responses ◽  
Evidence Based ◽  
Management Option ◽  
Pure Tone Audiogram

Purpose Misophonia is a sound tolerance disorder condition in certain sounds that trigger intense emotional or physiological responses. While some persons may experience misophonia, a few patients suffer from misophonia. However, there is a dearth of literature on audiological assessment and management of persons with misophonia. The purpose of this report is to discuss the assessment of misophonia and highlight the management option that helped a patient with misophonia. Method A case study of a 26-year-old woman with the complaint of decreased tolerance to specific sounds affecting quality of life is reported. Audiological assessment differentiated misophonia from hyperacusis. Management included retraining counseling as well as desensitization and habituation therapy based on the principles described by P. J. Jastreboff and Jastreboff (2014). A misophonia questionnaire was administered at regular intervals to monitor the effectiveness of therapy. Results A detailed case history and audiological evaluations including pure-tone audiogram and Johnson Hyperacusis Index revealed the presence of misophonia. The patient benefitted from intervention, and the scores of the misophonia questionnaire indicated a decrease in the severity of the problem. Conclusions It is important to differentially diagnose misophonia and hyperacusis in persons with sound tolerance disorders. Retraining counseling as well as desensitization and habituation therapy can help patients who suffer from misophonia.

scholarly journals P121 The efficacy of treatment interventions on fatigue in adolescents with juvenile idiopathic arthritis: a literature review

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Sebastian Moshtael ◽  
Sonia Khanom ◽  
Janet E McDonagh
Keyword(s):  
Quality Of Life ◽  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Rating Scale ◽  
Outcome Measure ◽  
Therapeutic Interventions ◽  
Current Evidence ◽  
Original Research ◽  
Qualitative Synthesis

Abstract Background/Aims  Fatigue has been reported by young people and professionals alike as a major challenge for people living with juvenile idiopathic arthritis (JIA) . It remains unclear as to how therapeutic interventions impacts on this major symptom. The aim of this review was to determine the current evidence for the effectiveness of therapeutic interventions, non- pharmacological and pharmacological, on improving fatigue in adolescents with JIA. Methods  Three electronic databases (MEDLINE, EMBASE, PsycINFO) were searched from 2000 to Feb 2020; in addition to manual searches. Articles were eligible for inclusion if they (i) were original research papers, (ii) had fatigue as a primary outcome measure (iii) included adolescents (10-25 years) and (iv) were available in the English language. Results  Of the 3,142 records identified, 31 underwent full text assessment and 4 studies were included in the qualitative synthesis including 2 from the Netherlands, 1 Germany, and 1 from Canada. The total number of participants across the 4 studies was 824. Three were randomised controlled trials of nonpharmacological interventions and one was a cohort study from a national drug registry including older adolescents JIA (mean: 19-years). Measurement tools included the Paediatric Quality of life multidimensional fatigue scale, (2 studies), the Checklist for Individual Strength CIS-20 (1 study), a numeric rating scale (1 study). In one study a visual analogue scale for energy level was also utilised. In 2 studies baseline prevalence of fatigue was reported as 60% and 76% respectively. Significant reduction in fatigue was observed in all three nonpharmacological studies. In the registry study, fatigue was noted to be prevalent in spite of the disease being in inactive or minimally active on biologic therapy. In 3 studies the relationship between health-related quality of life and fatigue was highlighted and showed a decreased quality of life in fatigued young people. Conclusion  Fatigue is a significant problem in JIA during adolescence and influences quality of life. Improvements in fatigue with non-pharmacological interventions have been reported. However, at present, data is insufficient to conclusively decide which treatment intervention is most efficacious in treating fatigue in young people with JIA. Fatigue should be considered as an important outcome measure for the management of JIA in future evaluations of interventions. Disclosure  S. Moshtael: None. S. Khanom: None. J.E. McDonagh: None.

Therapeutic Affordances of Social Media and Associated Quality of Life Outcomes in Young Adults

2021 ◽  
pp. 089443932110329
Author(s):  
Paul Dodemaide ◽  
Mark Merolli ◽  
Nicole Hill ◽  
Lynette Joubert
Keyword(s):  
Quality Of Life ◽  
Social Media ◽  
Young Adults ◽  
Well Being ◽  
Evidence Base ◽  
Social And Emotional ◽  
Perceived Quality Of Life ◽  
Use Of Social Media ◽  
The Relationship

There is a growing body of literature exploring the general population’s use of social media for assistance in dealing with stigmatized health issues. This study presents novel research examining the relationship between social media use and young adults. It utilizes a therapeutic affordance (TA) framework. Quantitative results from this study are complemented by qualitative data. The relationships between distinct social media and their TA (a–b) are presented to highlight their potential to impact positively on social and emotional well-being outcomes. Evidence includes broad support for “connection,” “narration,” and “collaboration” TAs in this context and the relationship between the use of distinct social media and perceived quality of life (QOL) outcomes (a–c). TA provides an appropriate and valuable theoretical framework which is useful for the development of an evidence-base from the analysis of young adult’s social media usage. An analysis of the association between social media and their QOL outcomes is presented according to the TA relationship pathway (a–c–b). The adoption of a TA framework enables a nuanced analysis of significant associations between specific social media, TA, and improved QOL outcomes. This study demonstrates the significant association between social media and perceived QOL outcomes in young adults.

scholarly journals Recovery, quality of life and issues in supported housing among residents with co-occurring problems: a cross-sectional study

2020 ◽  
Vol 13 (2) ◽  
pp. 73-87
Author(s):  
Linda Nesse ◽  
Marianne Thorsen Gonzalez ◽  
Geir Aamodt ◽  
Ruth Kjærsti Raanaas
Keyword(s):  
Quality Of Life ◽  
Cross Sectional Study ◽  
Supported Housing ◽  
Sectional Study ◽  
Housing Satisfaction ◽  
Cross Sectional ◽  
Staff Support ◽  
Content Type ◽  
Sense Of Home

Purpose Recovery for residents who experience co-occurring problems and live in supported housing takes place in everyday contexts. This study aims to explore residents’ self-reported recovery and quality of life and examine the relationships between these factors and issues in supported housing. Design/methodology/approach A cross-sectional study was conducted at 21 supported housing sites in six cities across Norway. A total of 104 residents (76 men and 28 women) responded to measures of recovery (Recovery Assessment Scale – Revised), life satisfaction (Manchester Short Assessment of Quality of Life), affect (single items), staff support (Brief INSPIRE) and sense of home (single items). Findings Linear regression analyses indicated associations between recovery and staff support (B = 0.01, 95% CI = 0.01-0.02, ß = 0.39), housing satisfaction (B = 0.15, 95% CI = 0.07-0.22, ß = 0.38), sense of home (B = 0.23, 95% CI = 0.14-0.32, ß = 0.49) and satisfaction with personal economy (B = 0.11, 95% CI = 0.05-0.17, ß = 0.33). Similarly, associations were found between life satisfaction and staff support (B = 0.03, 95% CI = 0.02-0.04, ß = 0.46), housing satisfaction (B = 0.63, 95% CI = 0.46-0.80, ß = 0.60), sense of home (B = 0.65, 95% CI = 0.42-0.87, ß = 0.51) and satisfaction with personal economy (B = 0.34, 95% CI = 0.19-0.50, ß = 0.39). Originality/value The findings imply that core issues in supported housing, namely, staff support, housing satisfaction, sense of home and satisfaction with personal economy, are associated with recovery and quality of life.

Would integrating women's professional care of pelvic organ prolapse improve the symptoms and quality of life: an integrative literature review

2020 ◽  
Vol 28 (2) ◽  
pp. 119-133
Author(s):  
Nicola Davies ◽  
Teresa Burdett
Keyword(s):  
Quality Of Life ◽  
Pelvic Organ Prolapse ◽  
Conservative Treatment ◽  
Conservative Management ◽  
Integrated Approach ◽  
Pelvic Organ ◽  
Social Implications ◽  
Content Type ◽  
Practical Implications

PurposeIntegrated healthcare is a central tenant of the NHS Long Term Plan (NHS, 2019). NICE in 2019 published guidelines; advising the integration of multidisciplinary professionals which may lead to an improvement in conservative treatment methods of pelvic organ prolapse. Therefore, current literature on the conservative treatments for pelvic organ prolapse needs to be reviewed to ascertain if an integrated approach would improve the symptoms and quality of life for women.Design/methodology/approachA systematic review of the literature between 2013 and 2018 was implemented. Papers included were written in English, peer-reviewed and consisted of treatments of pelvic organ prolapse in women. Papers containing surgical interventions, postpartum participants, reviews, evaluations, guidelines, follow-up studies, focusing on cost effectiveness, sexual function were excluded.FindingsSeven studies in total were included, and two overarching themes were identified: quality of life after treatment and the effect of conservative treatment on pelvic organ prolapse symptoms. The literature suggested that integrating care had a more positive outcome on pelvic organ symptoms and quality of life.Research limitations/implicationsTo develop a robust enhanced model of care for conservative treatment of pelvic organ prolapse through more mixed method or qualitative research, that incorporates integrative treatment methods with collaboration from multidisciplinary professionals.Practical implicationsThe practical implications of integrating the conservative management of pelvic organ prolapse is the communication between the multidisciplinary team must be exceptional to ensure everyone understands and agrees the treatment that is being provided to patient. Also, effective teamwork is important to ensure the patient receives the best care with input from the correct disciplines. The multi-professional team will need to have regular meetings to discuss and implement care plans for patients that might prove difficult to schedule due to differing commitments and priorities. This must be overcome to insure a successful and effective integrated approach to pelvic organ prolapse is delivered.Social implicationsThe social implications of integrating the professional approach to women's care of pelvic organ prolapse involves reducing the severity of the symptoms therefore, increasing the quality of life. This may result in the reduction of surgical intervention due to the patient being satisfied with the conservative management. Through integrating the management of the prolapse the patient will receive an accessible individualised care plan pathway that focuses on treating or reducing the impact of the symptoms that are bothersome to the patient whilst managing patient expectations. Patients will also, be reassured by the number of multi-disciplinary professionals involved in their care.Originality/valueGlobal integration of conservative treatments and multidisciplinary-professionals specialising in pelvic organ prolapse and pelvic floor dysfunction is needed.

scholarly journals Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management

Autism ◽  
2020 ◽  
pp. 136236132096236
Author(s):  
Joanne Tarver ◽  
Effie Pearson ◽  
Georgina Edwards ◽  
Aryana Shirazi ◽  
Liana Potter ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Language Use ◽  
Management Strategies ◽  
Assessment Tools ◽  
Evidence Based ◽  
Structured Interviews ◽  
Verbal Language ◽  
Parental Recognition

Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words. Lay abstract Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.

Quality of life in breast cancer sufferers

2016 ◽  
Vol 29 (7) ◽  
pp. 721-732 ◽  
Author(s):  
Ahmed Essmat Shouman ◽  
Nahla Fawzy Abou El Ezz ◽  
Nivine Gado ◽  
Amal Mahmoud Ibrahim Goda
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Family Income ◽  
Early Stage ◽  
Functional Domain ◽  
Related Factors ◽  
Specific Patient ◽  
Content Type ◽  
Factors Affecting

Purpose – The purpose of this paper is to measure health-related quality of life (QOL) among patients with early stage cancer breast under curative treatment at department of oncology and nuclear medicine at Ain Shams University Hospitals. Identify factors affecting QOL among these patients. Design/methodology/approach – A cross-sectional study measured QOL among early stage female breast cancer (BC) patients and determined the main factors affecting their QOL. Three interviewer administered questionnaires were used. Findings – The physical domain mostly affected in BC patients and the functional domain least. Socio-demographic factors that significantly affected BC patients QOL scores were patient age, education, having children and family income. Specific patient characteristics include caregiver presence – a factor that affected different QOL scores. Age at diagnosis, affection in the side of the predominant hand, post-operative chemotherapy and difficulty in obtaining the medication were the disease-related factors that affected QOL scores. Originality/value – The final model predicting QOL for early stage female BC patients included age, education and difficulty in obtaining the medication as determinants for total QOL score. Carer presence was the specific patient characteristic that affected different QOL scores.

Examining the experiences and quality of life of patients with an autism spectrum disorder detained in high secure psychiatric care

2017 ◽  
Vol 3 (1) ◽  
pp. 3-14 ◽  
Author(s):  
David Murphy ◽  
Hannah Mullens
Keyword(s):  
Quality Of Life ◽  
Autism Spectrum Disorder ◽  
Psychiatric Care ◽  
Autism Spectrum ◽  
Spectrum Disorder ◽  
Living Situation ◽  
Diverse Range ◽  
Content Type ◽  
Secure Psychiatric Care

Purpose Although individuals with an autism spectrum disorder (ASD) represent a small proportion of forensic psychiatric patients as a group they present with specific difficulties and needs. There is also evidence that if detained individuals with an ASD experience particular difficulties within custodial environments as a result of a mismatch between the difficulties associated with their ASD and the environmental demands. The purpose of this paper is to explore the experience of individuals with an ASD admitted to a high secure psychiatric care (HSPC) hospital. Design/methodology/approach Using both a semi-structured interview and a quality of life self-report measure (the Lancashire Quality of Life Profile) the experiences and views of seven patients with an ASD detained in one HSPC hospital were qualitatively explored. Findings Whilst a diverse range of negative and positive aspects of being within HSPC were identified by patients interviewed, those with prison experience thought HSPC was a less stressful environment with more therapeutic opportunities. As a group, patients with an ASD reported a similar or significantly better quality of life in many domains (global, leisure, financial and living situation) compared to other detained forensic patient groups. Practical implications Although most patients with an ASD interviewed reported positive experiences, there are a number of practical improvements that could be made within the hospital to reduce experienced stress levels and perhaps improve therapeutic outcomes. Originality/value Within the context of the Department of Health's autism strategy (2010) and subsequent update think autism (2014), the survey highlights continued ASD awareness training for staff as important. In responding to the risks and needs of individuals with an ASD in HSPC there is further support for the development of an ASD specialist service.

Sign in / Sign up

Export Citation Format

Share Document