scholarly journals A WEB-BASED MOBILE APPLICATION TO SUPPORT SOCIAL ENGAGEMENT IN PERSONS WITH DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S465-S466
Author(s):  
Hayley R McCarron ◽  
Rachel Zmora ◽  
Joseph E Gaugler

Abstract Assistive technology has been recognized as a promising tool to improve the lives of persons living with dementia and their caregivers. The use of assistive technology in dementia care is expanding, although it is most often applied to manage care and promote safety. There is a lack of assistive technology designed to aid persons with dementia to participate in meaningful activities. The present study utilizes a pilot randomized controlled trial (RCT) design to evaluate the feasibility, acceptability, and effects of an assistive technology device, the Social Support Aid (SSA), designed to assist persons with dementia engage in social interaction. Quantitative data were collected initially and three and six months later, and participants in the technology group participated in qualitative interviews. Feasibility and utility scores indicated that participants felt neutral about the technology. Use of the SSA was not significantly associated with changes in quality of social interactions or quality of life measures over the six months of follow-up (P > .05). The qualitative analysis revealed three themes that described how and why the SSA worked or did not: (1) outcomes (2) reasons why (not) useful and (3) recommendations. There is a need to develop effective assistive technology that improves the quality of life of persons with dementia. Assistive technology that allows persons living with dementia to maintain some level of autonomy should be a priority for future research. Results provide recommendations for future assistive technology development and evaluation.

2019 ◽  
Author(s):  
Hayley R McCarron ◽  
Rachel Zmora ◽  
Joseph E Gaugler

BACKGROUND It is estimated that the number of individuals living with dementia worldwide will increase from 50 million in 2017 to 152 million by 2050. Assistive technology has been recognized as a promising tool to improve the lives of persons living with memory loss and their caregivers. The use of assistive technology in dementia care is expanding, although it is most often intended to manage care and promote safety. There is a lack of assistive technology designed to aid persons with memory loss in participating in meaningful activities. The Social Support Aid (SSA) is a mobile phone-based app that employs facial recognition software. It was designed to assist persons with memory loss remember the names and relationships of the people they interact with to promote social engagement. OBJECTIVE This study uses a pilot randomized controlled trial (RCT) design to evaluate the SSA. The objectives were to ascertain (1) the feasibility and utility of the SSA, (2) whether the outcomes of SSA use suggest potential benefits for persons living with memory loss and their care partners, and (3) how study design components could inform subsequent RCTs. METHODS Persons with memory loss were randomized to the SSA (n=20) or the usual care control group (n=28). Quantitative data were collected at three timepoints (baseline, 3 months, and 6 months). Participants in the intervention group participated in qualitative interviews following completion of their 6-month survey. RESULTS Participant eligibility, willingness to be randomized, and retention were not barriers to conducting a full-scale RCT; however, recruitment strategies should be addressed before doing so. Feasibility and utility scores indicated that participants felt neutral about the technology. Use of the SSA was not significantly associated with changes in quality of social interactions or quality of life measures over the 6 months of follow-up (P>.05). The qualitative analysis revealed three themes that described how and why the SSA worked or not: (1) outcomes, (2) reasons why it was or was not useful, and (3) recommendations. CONCLUSIONS There is a need to develop effective assistive technology that improves the quality of life of persons with memory loss. Assistive technology that allows persons living with memory loss to maintain some level of autonomy should be a priority for future research. This study suggests reasons why the SSA facial recognition software did not appear to improve the quality of social interaction and quality of life of people with memory loss. Results also provide recommendations for future assistive technology development and evaluation. CLINICALTRIAL ClinicalTrials.gov NCT03645694; https://clinicaltrials.gov/ct2/show/NCT03645694 (Archived by WebCite at http://www.webcitation.org/78dcVZIqq)


2019 ◽  
Vol 29 (1) ◽  
Author(s):  
Margaret Kelman ◽  
Victoria Hammersley ◽  
Marilyn Kendall ◽  
Mome Mukherjee ◽  
Lynn Morrice ◽  
...  

AbstractIn the United Kingdom, there are acknowledged short comings in allergy care provision for patients seen in primary care. There is a lack of allergy training for healthcare professionals and this leads to inappropriate referrals to the limited number of allergy specialists. The primary aims of this study are to assess the feasibility of delivering and evaluating a new nurse-led allergy service in primary care, measured by recruitment, retention and quality of life. This is a single arm feasibility trial in which up to 250 participants referred to the nurse-led allergy clinic will receive the intervention and complete 6–12 weeks follow-up before being referred back to their usual care. Primary outcomes for this study will be establishment of clinics, recruitment and retention rates, and estimates of change in disease-specific quality of life measures. Secondary outcomes will be acceptability of the new service to participants/carers and healthcare professionals. A sample of participants and professional stakeholders will take part in more in-depth semi-structured qualitative interviews. Data from this feasibility trial will be used to inform plans for a pilot randomised controlled trial of nurse-led allergy clinics.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Nicholas J. Hulbert-Williams ◽  
Sabrina F. Norwood ◽  
David Gillanders ◽  
Anne M. Finucane ◽  
Juliet Spiller ◽  
...  

Abstract Objectives Transitioning into palliative care is psychologically demanding for people with advanced cancer, and there is a need for acceptable and effective interventions to support this. We aimed to develop and pilot test a brief Acceptance and Commitment Therapy (ACT) based intervention to improve quality of life and distress. Methods Our mixed-method design included: (i) quantitative effectiveness testing using Single Case Experimental Design (SCED), (ii) qualitative interviews with participants, and (iii) focus groups with hospice staff. The five-session, in-person intervention was delivered to 10 participants; five completed at least 80%. Results At baseline, participants reported poor quality of life but low distress. Most experienced substantial physical health deterioration during the study. SCED analysis methods did not show conclusively significant effects, but there was some indication that outcome improvement followed changes in expected intervention processes variables. Quantitative and qualitative data together demonstrates acceptability, perceived effectiveness and safety of the intervention. Qualitative interviews and focus groups were also used to gain feedback on intervention content and to make design recommendations to maximise success of later feasibility trials. Conclusions This study adds to the growing evidence base for ACT in people with advanced cancer. A number of potential intervention mechanisms, for example a distress-buffering hypothesis, are raised by our data and these should be addressed in future research using randomised controlled trial designs. Our methodological recommendations—including recruiting non-cancer diagnoses, and earlier in the treatment trajectory—likely apply more broadly to the delivery of psychological intervention in the palliative care setting. This study was pre-registered on the Open Science Framework (Ref: 46,033) and retrospectively registered on the ISRCTN registry (Ref: ISRCTN12084782).


2016 ◽  
Vol 31 (1) ◽  
pp. 72-81 ◽  
Author(s):  
Breffni Hannon ◽  
Nadia Swami ◽  
Gary Rodin ◽  
Ashley Pope ◽  
Camilla Zimmermann

Background: Early palliative care improves quality of life and satisfaction with care and is increasingly endorsed for patients with advanced cancer. However, little is known about the experience of receiving early palliative care from a patient and caregiver perspective. Aim: The aim of this qualitative study was to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care. Design: Qualitative grounded theory study using individual interviews. Setting/participants: The study took place at a comprehensive cancer centre. Patients ( n = 26) and caregivers ( n = 14) from the intervention arm of a cluster-randomised controlled trial of early palliative care versus standard oncology care participated in qualitative interviews. Participants were asked to comment on their quality of life, the quality of care provided over the intervention period and their experiences with the palliative care team. Results: Participants described feeling supported and guided in their illness experience and in their navigation of the healthcare system. Specific elements of early palliative care included prompt, personalised symptom management; holistic support for patients and caregivers; guidance in decision-making; and preparation for the future. Patients with symptoms particularly valued prompt attention to their physical concerns, while those without symptoms valued other elements of care. Although three patients were ambivalent about their current need for palliative care, no distress was reported as a consequence of the intervention. Conclusion: The elements of care described by participants may be used to develop, support and refine models of early palliative care for patients with cancer.


2018 ◽  
Vol 81 (11) ◽  
pp. 613-623 ◽  
Author(s):  
Benjamin Milbourn ◽  
Jaya Saraswati ◽  
Angus Buchanan

Introduction Increased attention has focused on the importance of time spent by ageing adults in volunteering. The aim of this systematic review was to analyse literature exploring the relationship between time spent volunteering and quality of life for adults over the age of 50 years. Method Electronic searches of nine databases located relevant articles involving adults over the age of 50 in volunteering activities that included psychological, physical and social quality of life domains. The quality of the selected articles was assessed and data extracted using preferred reporting items for systematic reviews and meta-analyses. Results Of the 65 articles retrieved, 22 were reviewed and eight included in the final review. Studies included one randomised controlled trial, one cross-sectional and six longitudinal studies. Levels of time spent volunteering by participants within the studies varied considerably. Articles retrieved reported positive quality of life outcomes including increases in life satisfaction, self-esteem and social support and a slowed functional decline. Conclusion Volunteering is identified as an important occupation for adults over the age of 50, although the relationship between time spent volunteering and the impact on quality of life outcomes is still not fully understood. Future research is required to better understand the impact of time spent volunteering on quality of life.


2019 ◽  
Vol 5 ◽  
pp. 237802311989619
Author(s):  
R. Neil Greene

As refugees move from forced displacement to resettlement, their networks change dramatically alongside their living conditions and surroundings. The relative benefit of different kinds of ties in this context is not well known. Data for this study came from quantitative and qualitative interviews that were part of the Refugee Well-Being Project (N = 290), a longitudinal randomized controlled trial study inclusive of refugees resettling from the Great Lakes region of Africa, Afghanistan, Iraq, and Syria. Quantitative results revealed that greater numbers of kinship ties were related to better psychological quality of life ( p < .01) and greater numbers of reported services providers as social ties were related to higher emotional distress ( p < .001). Greater numbers of friendship ties were not statistically related to psychological quality of life or emotional distress. Qualitative findings suggest that cultural brokers—social ties that can bridge cultures, languages, and backgrounds—were particularly important to well-being, blending the benefits of strong and weak ties.


2020 ◽  
Vol 29 (4) ◽  
pp. 2097-2108
Author(s):  
Robyn L. Croft ◽  
Courtney T. Byrd

Purpose The purpose of this study was to identify levels of self-compassion in adults who do and do not stutter and to determine whether self-compassion predicts the impact of stuttering on quality of life in adults who stutter. Method Participants included 140 adults who do and do not stutter matched for age and gender. All participants completed the Self-Compassion Scale. Adults who stutter also completed the Overall Assessment of the Speaker's Experience of Stuttering. Data were analyzed for self-compassion differences between and within adults who do and do not stutter and to predict self-compassion on quality of life in adults who stutter. Results Adults who do and do not stutter exhibited no significant differences in total self-compassion, regardless of participant gender. A simple linear regression of the total self-compassion score and total Overall Assessment of the Speaker's Experience of Stuttering score showed a significant, negative linear relationship of self-compassion predicting the impact of stuttering on quality of life. Conclusions Data suggest that higher levels of self-kindness, mindfulness, and social connectedness (i.e., self-compassion) are related to reduced negative reactions to stuttering, an increased participation in daily communication situations, and an improved overall quality of life. Future research should replicate current findings and identify moderators of the self-compassion–quality of life relationship.


Sign in / Sign up

Export Citation Format

Share Document