Lessons Learned from a Human-Centered Design of an Immersive Exergame for People with Dementia

2021 ◽  
Vol 5 (CHI PLAY) ◽  
pp. 1-27
Author(s):  
Sukran Karaosmanoglu ◽  
Sebastian Rings ◽  
Lucie Kruse ◽  
Christian Stein ◽  
Frank Steinicke
Keyword(s):  
Participatory Design ◽  
Qualitative Evaluation ◽  
Lessons Learned ◽  
Structured Interviews ◽  
Human Centered Design ◽  
Physical Exercises ◽  
People With Dementia ◽  
Physical Abilities ◽  
Social Gaming ◽  
Mechanics Concepts

Cognitive-physical exercises can reduce the progression of dementia. However, traditional methods often induce problems (e.g., lack of motivation), whereas the success of recent virtual reality (VR) exergames such as Beat Saber may provide a playful, motivational, and immersive alternative. Yet, until now, it remains unclear which game mechanics, concepts, and designs work best for people with dementia, and how to implement exergames for and with this user group. In this paper, we adapted a human-centered design approach to address the specifics of developing VR exergames for people with dementia. This includes semi-structured interviews with stakeholders and contextual inquiries to better analyze the user requirements. Based on our analysis, we present Memory Journalist VR - a novel VR exergame specifically designed for people with dementia in a participatory design process. We report the qualitative evaluation based on the feedback gathered in five focus group sessions. Finally, we discuss the lessons learned, which provide important insights for the design of future VR exergames for people with dementia: (i) creating social gaming activities with a focus on shared aspects, (ii) support of an inverse game flow channel addressing decline and variance in cognitive-physical abilities, and (iii) ensuring a safe VR exergame experience.

scholarly journals A qualitative evaluation of the impact of a Good Life Club on people living with dementia and care partners

Dementia ◽  
2021 ◽  
pp. 147130122199889
Author(s):  
Lydia Morris ◽  
Anthea Innes ◽  
Sarah Smith ◽  
Jack Wilson ◽  
Sophie Bushell ◽  
...  
Keyword(s):  
Social Life ◽  
Social Connectedness ◽  
Good Life ◽  
Qualitative Evaluation ◽  
Well Being ◽  
Structured Interviews ◽  
People With Dementia ◽  
Care Partners ◽  
Set Up ◽  
The Impact

Background Research suggests there is a lack of post-diagnostic support to enable people living with dementia to fulfil social and active lives throughout their dementia journey. Gardening has been found to have many benefits for people living with dementia. Although such research is important, most research frames people with dementia as passive recipients of stimulation. Research into the impact of a community-based gardening group, where people living with dementia are active in the development of an outdoor space, is underdeveloped. Knowledge about the impact of participating in such groups is also sparse. The Good Life Club (GLC) was co-developed and evaluated to respond to these gaps. Objectives The primary aim of this article is to present the findings regarding the impact of attending the GLC on the self-reported well-being for people living with dementia and care partners. Methods Qualitative data were collected via 22 semi-structured interviews. Fourteen interviews were conducted before the GLC and eight after the GLC. Thematic analysis was used to analyse data. Dementia Care Mapping data were collected to supplement the interview data. Findings Four key themes were identified. The first was that participants considered having active participation in social life to be a key aspect of living a good life. The second was that the way that the GLC was set up and delivered gave the participants ownership of the GLC and within this they felt able to contribute. The third was the importance of social connectedness and peer support to the well-being of both people living with dementia and care partners. Fourth, positive mood and well-being was directly experienced through gardening. Conclusions The combination of long-term investment of time and energy to the GLC, ongoing friendships and in-session autonomy act as key ingredients in creating a group that is relaxed, full of humour and highly valued.

scholarly journals A qualitative evaluation of an mHealth application to support patients with psoriasis in relation to follow-up consultations (Preprint)

2021 ◽  
Author(s):  
Bettina Trettin ◽  
Dorthe Boe Danbjørg ◽  
Flemming Andersen ◽  
Steven Feldman ◽  
Hanne Agerskov
Keyword(s):  
Participatory Design ◽  
Healthcare Professionals ◽  
Eligible Patient ◽  
Qualitative Evaluation ◽  
Work Practice ◽  
Study Data ◽  
Structured Interviews ◽  
Group Interviews ◽  
The Relationship

BACKGROUND Teledermatology has the potential, to help deliver healthcare by transforming the relationship between patients and healthcare professionals, shifting the power of consultation so that patients can become more informed, assertive and involved in their care. mHealth is already a promising and reliable tool for the long-term management of psoriasis patients on systemic treatment. In an attempt to facilitate a more patient-centred approach in clinical practice, we designed and developed an mHealth solution in order to support patients in self-management and empowerment. OBJECTIVE The aim of this study was to explore the experiences and perceptions of patients and healthcare professionals of using an mHealth solution that was developed using a participatory design approach. METHODS The study was designed as an explorative qualitative study. Data were collected by way of semi-structured interviews with patients and focus group interviews with healthcare professionals. RESULTS All participants found it easy to use the mHealth solution and patients found it convenient. Patients’ reflexivity was improved because they could prepare ahead of consultations. Video consultations provided patients with a degree of freedom in their everyday lives, not having to attend to in-person visits. Among the healthcare professionals there were concerns regarding their medical responsibilities since they could not asses the patients’ skin as they used to. The mHealth solution required new workflows and procedures that were not part of the existing consultations routines. CONCLUSIONS The mHealth solution can strengthen the relationship between healthcare professionals and patients and facilitate patients to become more active in their care. Alignment and structure in relation to selection of eligible patient candidates for being offered the mHealth solution could reduce social health inequalities. In addition, video consultations changed the healthcare professionals’ work practice, necessitating new types of skills to communicate with patients. CLINICALTRIAL The study was approved by the Danish Data Protection Agency (2012-58-0018).

Mentalizing Imagery Therapy mobile application for family dementia caregivers: feasibility and effects on mood and caregiving

2018 ◽  
Author(s):  
Abu Sikder ◽  
Francis Yang ◽  
Rhiana Schafer ◽  
Glenna A. Dowling ◽  
Lara Traeger ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Mobile Application ◽  
Self Regulation ◽  
Pilot Trial ◽  
Depression Symptom ◽  
Structured Interviews ◽  
Physical Strain ◽  
Dementia Caregivers ◽  
Loved One ◽  
People With Dementia

Objectives: Due to psychological and physical strain, family caregivers of patients with Alzheimer’s disease and related dementias are at high risk for depression and stress related disorders. We investigated the feasibility of a mobile application (App) intervention delivering Mentalizing Imagery Therapy (MIT), which incorporates guided imagery and mindfulness, to facilitate self-regulation and increase perspective on the mental life of self and others. Method: A 4-week pilot trial of an MIT App for family caregivers of people with dementia was conducted to assess feasibility of use, mood and depression symptom benefit, and relationship changes. Semi-structured interviews were conducted at the study’s conclusion to characterize participants’ perceived benefits. Results: 80% of 21 consented participants downloaded the App, utilized it at least once, and were further analyzed. Of these participants, average usage of audio recordings was 14 ± 10 (SD) days out of 28 possible, and 29 ± 28 individual sessions. Acute improvement in mood from before to after completion of exercises was uniformly observed (p < .001), and after four weeks there was a significant increase in positive affect and a reduction in negative affect. Participants with severe levels of depression (n=3) at baseline exhibited an improvement in symptoms at 4 weeks averaging 30% (p < .05). Semi-structured interviews revealed an increase in the ability to remain “centered" despite caregiving challenges, take the perspective of the loved one, and positively reframe the caregiver experience.Conclusion: App delivery of MIT is feasible for family dementia caregivers. Results showed moderate to high usage of the app for a majority of the users, and promising improvements in mood and depression. These data provide justification for larger, controlled trials.

Cancer treatment decisions for people living with dementia: experiences of family carers

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld
Keyword(s):  
Cancer Treatment ◽  
Healthcare Professionals ◽  
Cancer Recurrence ◽  
Treatment Decisions ◽  
Support Needs ◽  
Family Carers ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
Cancer Data ◽  
People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

Optimizing electronic capture of patient-reported outcome measures in oncology clinical trials: lessons learned from a qualitative study

2020 ◽  
Vol 9 (17) ◽  
pp. 1195-1204
Author(s):  
Florence D Mowlem ◽  
Brad Sanderson ◽  
Jill V Platko ◽  
Bill Byrom
Keyword(s):  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Lessons Learned ◽  
Structured Interviews ◽  
Patient Reported ◽  
Oncology Clinical Trials ◽  
Anticancer Treatment ◽  
Fit For Purpose ◽  
The Impact ◽  
Electronic Implementation

Aim: To understand the impact of anticancer treatment on oncology patients’ ability to use electronic solutions for completing patient-reported outcomes (ePRO). Materials & methods: Semi-structured interviews were conducted with seven individuals who had experienced a cancer diagnosis and treatment. Results: Participants reported that the following would impact the ability to interact with an ePRO solution: peripheral neuropathy of the hands (4/7), fatigue and/or concentration and memory issues (6/7), where they are in a treatment cycle (5/7). Approaches to improve usability included: larger, well-spaced buttons to deal with finger numbness, the ability to pause a survey and complete at a later point and presenting the recall period with every question to reduce reliance on memory. Conclusion: Symptoms associated with cancers and anticancer treatments can impact the use of technologies. The recommendations for optimizing the electronic implementation of patient-reported outcome instruments in this population provides the potential to improve data quality in oncology trials and places patient needs at the forefront to ensure ‘fit-for-purpose’ solutions.

scholarly journals The Importance of Perceived Relevance: A Qualitative Evaluation of Patient’s Perceptions of Value and Impact Following a Low-Intensity Group-Based Pain Management Program

Medicina ◽  
2021 ◽  
Vol 57 (1) ◽  
pp. 46
Author(s):  
Joshua W. Pate ◽  
Elizabeth Tran ◽  
Seema Radhakrishnan ◽  
Andrew M. Leaver
Keyword(s):  
Pain Management ◽  
Qualitative Evaluation ◽  
Management Program ◽  
Structured Interviews ◽  
Patient Beliefs ◽  
Pain Management Program ◽  
Westmead Hospital ◽  
Group A ◽  
Perceived Relevance ◽  
Beliefs And Attitudes

Background and objectives: Limited evidence exists exploring perceptions of which aspects of a pain management program are perceived as valuable and impactful. The aim of this study was to explore patient beliefs about which aspects of a pain management program were valued and/or had perceived impact. Materials and Methods: One-on-one structured interviews were conducted with 11 adults three months after their completion of the Spark Pain Program at Westmead Hospital, Sydney, Australia. Concepts in the transcripts were inductively identified and explored, utilizing thematic analysis to better understand their relevance to the study aim. Results: Four themes emerged: (1) “The program overall was positive, but…”; (2) “I valued my improved knowledge and understanding of pain, but…”; (3) “I valued the stretching/relaxation/pacing/activity monitoring”; and (4) “I valued being part of a supportive and understanding group”. Participants reported that they liked being treated as an individual within the group. A lack of perceived personal relevance of key messages was identified in some participants; it appears that patients in pain programs must determine that changes in knowledge, beliefs, and attitudes are personally relevant in order for the changes to have a significant impact on them. Conclusions: This study provides new insights into aspects of a pain management program that were perceived as valuable and impactful, areas that “missed the mark”, and hypotheses to guide the implementation of service delivery and program redesign.

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.

scholarly journals Improving the experience of facility-based delivery for vulnerable women through obstetric care navigation: a qualitative evaluation

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kirsten Austad ◽  
Michel Juarez ◽  
Hannah Shryer ◽  
Patricia L. Hibberd ◽  
Mari-Lynn Drainoni ◽  
...  
Keyword(s):  
Health Workers ◽  
Positive Impact ◽  
Qualitative Evaluation ◽  
Obstetric Care ◽  
Hospital Staff ◽  
Public Hospitals ◽  
Future Research ◽  
Care Seeking ◽  
Structured Interviews ◽  
The Impact

Abstract Background Global disparities in maternal mortality could be reduced by universal facility delivery. Yet, deficiencies in the quality of care prevent some mothers from seeking facility-based obstetric care. Obstetric care navigators (OCNs) are a new form of lay health workers that combine elements of continuous labor support and care navigation to promote obstetric referrals. Here we report qualitative results from the pilot OCN project implemented in Indigenous villages in the Guatemalan central highlands. Methods We conducted semi-structured interviews with 17 mothers who received OCN accompaniment and 13 staff—namely physicians, nurses, and social workers—of the main public hospital in the pilot’s catchment area (Chimaltenango). Interviews queried OCN’s impact on patient and hospital staff experience and understanding of intended OCN roles. Audiorecorded interviews were transcribed, coded, and underwent content analysis. Results Maternal fear of surgical intervention, disrespectful and abusive treatment, and linguistic barriers were principal deterrents of care seeking. Physicians and nurses reported cultural barriers, opposition from family, and inadequate hospital resources as challenges to providing care to Indigenous mothers. Patient and hospital staff identified four valuable services offered by OCNs: emotional support, patient advocacy, facilitation of patient-provider communication, and care coordination. While patients and most physicians felt that OCNs had an overwhelmingly positive impact, nurses felt their effort would be better directed toward traditional nursing tasks. Conclusions Many barriers to maternity care exist for Indigenous mothers in Guatemala. OCNs can improve mothers’ experiences in public hospitals and reduce limitations faced by providers. However, broader buy-in from hospital staff—especially nurses—appears critical to program success. Future research should focus on measuring the impact of obstetric care navigation on key clinical outcomes (cesarean delivery) and mothers’ future care seeking behavior.

scholarly journals “We Are Doing These Things So That People Will Not Laugh at Us”: Caregivers’ Attitudes About Dementia and Caregiving in Nigeria

2021 ◽  
pp. 104973232110041
Author(s):  
Candidus C. Nwakasi ◽  
Kate de Medeiros ◽  
Foluke S. Bosun-Arije
Keyword(s):  
The United States ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Term Care ◽  
Awareness Campaigns ◽  
Knowledge Deficit ◽  
People With Dementia ◽  
Qualitative Descriptive ◽  
The Impact

Some Nigerians, in their effort to make sense of dementia symptoms, use descriptions that may stigmatize people with dementia and their families. This qualitative descriptive study focused on the everyday understanding of dementia and the impact of stigma on the caregiving experiences of informal female Nigerian dementia caregivers. Semi-structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Nigeria and analyzed for themes. Afterward, results were presented to focus groups of 21 adult Nigerians residing in the United States for more contextual insight on the findings. The three major themes were misconceptions about dementia symptoms, caregiving protects against stigmatization, and stigma affects caregiving support. Overall, we argue that knowledge deficit, poor awareness, and traditional spiritual beliefs combine to drive dementia-related stigmatization in Nigeria. Strategies such as culturally appropriate dementia awareness campaigns and formal long-term care policies are urgently needed to help strengthen informal dementia caregiving in Nigeria.

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