scholarly journals Exploring the Experiences of Persons Living With Dementia and Their Care Partners in a Memory Café-Style Program

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 273-273
Author(s):  
Morgan Bunting ◽  
Inga Antonsdottir ◽  
Marti Bailey ◽  
Quincy Samus
Keyword(s):  
Focus Groups ◽  
Well Being ◽  
Community Based ◽  
Supportive Environment ◽  
Meaningful Activity ◽  
Care Partners ◽  
Stakeholder Perspective ◽  
Multi Stakeholder ◽  
The Impact

Abstract Community-based supportive care interventions are needed to address unmet needs and maximize quality of life for persons living with dementias and their care partners (care dyad). Memory cafés and similar programs serve as a potentially important vehicle to reduce dementia stigmatization, improve inclusiveness, promote well-being, socialization and meaningful activity engagement, and disseminate dementia-related education and knowledge. Despite gaining popularity, little is known about how these programs impact participants or how they work best. The Club Memory® program in Washington, D.C. is an enhanced memory café-style program that delivers a normalizing environment, decreased negative stigma and a chance to experience a catalyst for change despite disease progression. Using qualitative methods, we investigated the perceived impact, benefits, and weaknesses of Club Memory from multi-stakeholder perspective, to explore how this program might be improved and standardized for broader implementation. We conducted two focus groups, one of care partners and one of persons living with dementia (N=12). Upon analyzing transcriptions, five common themes emerged among the focus groups: Atmosphere, Sense of Community, Skill-Building, Tools and Strength in Staff. Integrating perspectives from the care dyad revealed congruent thoughts on program perception, benefits and strengths, and opportunities for improvement. Club Memory® appears to be a valuable model that creates a stigma-free supportive environment, educates and engages the care dyad to foster understanding, confidence, curiosity and empowerment. Our findings contribute to a deeper understanding of the impact community-based strategies can positively impact the care dyad’s life.

here:now – Conceptual model of the impact of an experiential arts program on persons with dementia and their care partners

Dementia ◽  
2016 ◽  
Vol 16 (1) ◽  
pp. 29-45 ◽  
Author(s):  
Lee D Burnside ◽  
Mary Jane Knecht ◽  
Elizabeth K Hopley ◽  
Rebecca G Logsdon
Keyword(s):  
Conceptual Model ◽  
Positive Interactions ◽  
Theory Analysis ◽  
Community Based ◽  
Telephone Interviews ◽  
Care Partners ◽  
Arts Programs ◽  
Arts Engagement ◽  
The Impact

Community-based arts programs for persons with dementia and their care partners hold tremendous potential for increasing cognitive, social, and creative engagement and improving quality of life for these dyads. This is a qualitative, grounded theory analysis of here:now, a joint arts engagement program for persons with dementia and their care partners that involves gallery tours and art classes. Twenty-one care partners and 13 persons with dementia completed in-depth, semi-structured telephone interviews approximately two weeks following participation in the program. The program was well received by both persons with dementia and care partners as evidenced by high levels of engagement, mindfulness, social connection, and positive interactions. Factors identified as important to the experience included the museum space itself, the facilitation process, and socialization with other participants. Results form the basis for a conceptual model for assessing outcomes of arts programming and highlight the unique position of museums to support persons with dementia and their care partners in the community.

scholarly journals The impact of social care services on carers’ quality of life

2020 ◽  
Vol 4 (2) ◽  
pp. 235-259 ◽  
Author(s):  
Stacey Rand ◽  
Florin Vadean ◽  
Julien Forder
Keyword(s):  
Quality Of Life ◽  
Social Care ◽  
Well Being ◽  
Care Recipient ◽  
Community Based ◽  
Term Care ◽  
Care Services ◽  
The Impact ◽  
Health And Well Being

Unpaid care is an important part of long-term care systems. It is increasingly recognised that carers have their own health and well-being needs. Carer-specific interventions, as well as support for the care-recipient, may enable carers to maintain their own health and well-being alongside caring. This study seeks to establish whether and how community-based care services affect carers’ quality of life. The Adult Social Care Outcomes Toolkit for Carers was used to capture carers’ social care-related quality of life through qualitative interviews and a survey of carers in England in order to provide insights into the impact of community-based care services on carers’ quality of life outcomes.

Underserved community-based walking program for breast cancer survivors.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. e288-e288
Author(s):  
Judy Angela Tjoe ◽  
Linda B. Piacentine ◽  
Karen M. Robinson ◽  
Alexander V. Ng ◽  
Leslie J. Waltke ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Focus Groups ◽  
Cancer Survivors ◽  
Breast Cancer Survivors ◽  
Well Being ◽  
Community Based ◽  
Convenience Sample ◽  
Walking Program

e288 Background: Advancements in early detection and new treatment options have improved outcomes for breast cancer survivors (BCS). With increased survivorship, improving quality of life (QOL) may be a challenge for some women. Exercise improves QOL for BCS and decreases recurrence, but, despite this many women do not routinely exercise. Underserved areas are at particular risk. Few studies have examined factors influencing exercise initiation and maintenance in underserved areas among minority overweight women. The purpose of this mixed methods study was to examine physiological outcomes and motivational factors in a community-based goal oriented walking program for BCS. Methods: A convenience sample of female BCS was recruited from an inner-city community center 12-week walking program. Women participated in physiological testing and focus groups before and after the program. Data was collected regarding strength, fitness, quality of life, and motivation of the women. Quantitative data was analyzed with paired t-tests. Two researchers independently analyzed focus groups’ transcriptions and like statements and phrases were coded. Themes emerged after discussions between the researchers. Results: The 13 participants [overweight BMI (n = 2), and obese BMI (n = 11)] had a mean survivorship of 5.4 years (range .25-14.5) years. Only 7 participants completed both pre and post physiological testing. Functional endurance significantly improved as indicated by the 6 Minute Walk Test (pre = 503(56), post = 570 (63) meters, mean(sd)), p = 0.02). While overall QOL did not improve, functional well-being showed significant improvement. Two focus group sessions were held at the beginning (n = 13) and end (n = 11) of the program. Themes emerged identifying 1) Treatment Weight Gain, 2) Familial Support, 3) Not Wanting to Go it Alone, 4) The Team Made the Difference Conclusions: Female BCS spoke of interpersonal and environmental factors involved in the decision to engage and maintain exercise with the walking program. Further research is needed to examine exercise motivation in underserved, overweight and obese breast cancer survivors.

scholarly journals The partner’s perspective of the impact of pituitary disease: Looking beyond the patient

2017 ◽  
Vol 24 (12) ◽  
pp. 1687-1697 ◽  
Author(s):  
Cornelie D Andela ◽  
Jitske Tiemensma ◽  
Adrian A Kaptein ◽  
Margreet Scharloo ◽  
Alberto M Pereira ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Focus Groups ◽  
Unmet Needs ◽  
Social Issues ◽  
Well Being ◽  
Cushing's Disease ◽  
Pituitary Disease ◽  
Negative Beliefs ◽  
The Impact

People with pituitary disease report impairments in quality of life. The aim of this study was to elucidate the impact of the pituitary condition on the lives of partners. Four focus groups of partners of people with pituitary disease (Cushing’s disease, non-functioning adenoma, acromegaly, prolactinoma) were conducted. Partners mentioned worries related to the pituitary disease and negative beliefs about medication, coping challenges, relationship issues, social issues and unmet needs regarding care. This study emphasizes the importance of not only paying attention to psychosocial well-being of people with pituitary disease but also to their partners.

Quality of Life in Migraine Patients: A Qualitative Study

Cephalalgia ◽  
2003 ◽  
Vol 23 (9) ◽  
pp. 892-900 ◽  
Author(s):  
I Ruiz de Velasco ◽  
N González ◽  
Y Etxeberria ◽  
JC Garcia-Monco
Keyword(s):  
Quality Of Life ◽  
Focus Groups ◽  
Qualitative Methods ◽  
Family Environment ◽  
Healthcare Professionals ◽  
Well Being ◽  
Pharmacological Management ◽  
Family Work ◽  
The Impact

The impact of migraine on quality of life has been traditionally evaluated by quantitative analysis, but diverse aspects remain insufficiently assessed, so a complementary qualitative approach may have advantages. The aim of this study was to assess the impact of migraine on the quality of life of migraineurs through the perception of patients and their relatives, and healthcare professionals. Qualitative methods were used, including six focus groups and nine personal interviews with 33 migraine patients under physician-directed treatment, five self-medicated patients, five relatives of migraine patients and seven healthcare professionals. Migraine has a negative affect on the quality of life, including physical, emotional and social aspects of daily life such as family, work and social relationships. Family environment and psychological well-being of patients were the aspects most affected according to patients and relatives. Health professionals emphasized work impairment and focused on pharmacological management and on the need for adequate information about migraine for non-medicated patients and patients' relatives. Qualitative methods, such as focus groups and interviews, are a valuable resource for assessing quality of life and well-being of migraine patients. These techniques open up new areas for further research.

The Impact of Robotic Companion Pets on Depression and Loneliness for Older Adults with Dementia During the COVID-19 Pandemic

2021 ◽  
pp. 089801012110646
Author(s):  
Donna M. Fogelson ◽  
Carolyn Rutledge ◽  
Kathie S. Zimbro
Keyword(s):  
Older Adults ◽  
Qualitative Data ◽  
Family Members ◽  
Well Being ◽  
Pet Therapy ◽  
Meaningful Activity ◽  
Moderate Dementia ◽  
Positive Experiences ◽  
The Impact

Purpose: Differences in depression and loneliness, during the COVID-19 pandemic, for older adults with mild to moderate dementia living in residential care after interacting with a robotic companion dog or cat were explored. Experiences of family members and professional caregivers were also examined. Design: This study used a mixed research design with pre- and post-questionnaires on depression and loneliness. Method: Quantitative data exploring the impact of companion pets on depression and loneliness were collected from participants pre-intervention and at 3- and 6-week intervals. Qualitative data were collected during the 6-week study period, permitting researchers to explore the impact of robotic companion pets on participants, family members, and professional caregivers. Findings: Results indicated depression (χ2F(2)  =  21.29, p < 0.001) and loneliness (χ2F(2)  =  21.11, p < 0.001) improved. Moreover, participants were engaged with their companion pet, providing meaningful, activity and positive experiences. Conclusions: Robotic companion pet therapy, a holistic, nonpharmacologic animal-assisted therapy (AAT), changed the AAT landscape at the study site and provided an alternative option to live pet therapy during COVID-19. Participant interactions with their robotic companion pets enhanced their well-being and quality of life, especially during stringent COVID-19 restrictions and social isolation.

scholarly journals How Singing can Help People With Dementia and Their Family Care-Partners: A Mixed Studies Systematic Review With Narrative Synthesis, Thematic Synthesis, and Meta-Integration

2021 ◽  
Vol 12 ◽  
Author(s):  
Zara Thompson ◽  
Felicity A. Baker ◽  
Jeanette Tamplin ◽  
Imogen N. Clark
Keyword(s):  
Quality Of Life ◽  
Quantitative Data ◽  
Qualitative Data ◽  
Well Being ◽  
Narrative Synthesis ◽  
Thematic Synthesis ◽  
People With Dementia ◽  
Care Partners ◽  
The Impact

Background: Recent research on the efficacy of music-based interventions for people with dementia have focused on specific outcomes and methods, and singing has been noted as a particularly beneficial activity. However, due to heterogeneity of research methods, there is a need to synthesise the findings of both quantitative and qualitative research in order to better understand both the impact and potential mechanisms of singing for people in this population.Method: This systematic review included quantitative, qualitative and mixed-methods studies, and analysed these using a systematic mixed-studies synthesis (with a results-based convergent approach). Quantitative and qualitative data were initially synthesised using a narrative synthesis and thematic synthesis method, respectively, before a final meta-integration method was used to synthesise common themes across the two data forms.Results: Electronic and hand search strategies revealed 1,815 relevant studies, 40 of which met the full eligibility criteria. Narrative synthesis of quantitative data revealed six key outcome areas (quality of life; psychological well-being; cognition; engagement; activities of daily living; care-partner well-being), and thematic synthesis of qualitative data generated seven themes relating to the impact and mechanisms of singing (pragmatic elements; social benefits; mood; identity; memory; flow-on effects; and relationships). Meta-integration identified four key areas relating to the impact and mechanisms of singing for people with dementia and care-partners: psychological well-being, quality of life, cognition, and care-partner well-being.Conclusion: Results from the syntheses suggest that singing can positively impact the lives of people with dementia and their care-partners, although due to heterogeneity of study design and outcome measures, it is difficult to draw conclusions based on quantitative data alone. Qualitative data provides further context and insights from participant perspectives, and when integrated with quantitative data, contextual factors that may influence the benefits that participants experience from singing are revealed.

scholarly journals Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine Arnaud ◽  
Carine Duffaut ◽  
Jérôme Fauconnier ◽  
Silke Schmidt ◽  
Kate Himmelmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cerebral Palsy ◽  
Young People ◽  
General Population ◽  
Transition Period ◽  
Well Being ◽  
Personal Factors ◽  
The Impact

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

scholarly journals Impact and cost-effectiveness evaluation of a community-based rehabilitation intervention on quality of life among Chinese adults with hearing loss: study protocol for a randomized controlled trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Xin Ye ◽  
Dawei Zhu ◽  
Siyuan Chen ◽  
Xuefeng Shi ◽  
Rui Gong ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Hearing Loss ◽  
Cost Effectiveness ◽  
Treatment Group ◽  
Hearing Aids ◽  
Control Group ◽  
Chinese Adults ◽  
Community Based ◽  
The Impact

Abstract Background Hearing loss is quite prevalent and can be related to people’s quality of life. To our knowledge, there are limited studies assessing the efficacy of hearing interventions on quality of life in adults. Therefore, we aim to conduct a randomized controlled trial (RCT) to determine the impact and cost-effectiveness of community-based hearing rehabilitation on quality of life among Chinese adults with hearing loss. Methods/design In this two-arm feasibility study, participants aged 16 and above with some degree of hearing loss (n = 464) will be recruited from Linyi City, Shandong Province. They are randomly assigned to the treatment group or the control group. Those in the treatment group are prescribed with hearing aids, while those in the control group receive no intervention. Reinstruction in use of devices is provided for the treatment group during booster visits held 12 months post-randomization or unscheduled interim visits when necessary. Data are collected at baseline and the follow-up 20 months later. The primary outcome is changes in quality of life over a 20-month study period. Secondary outcomes include sub-dimensions in quality of life, physical functioning, chronic diseases, cognitive function, depression, social support, hospitalizations, falls, and healthcare costs. Finally, we will evaluate whether hearing aids intervention is cost-effective to apply in a large scale. Discussion The trial is designed to evaluate the impact and cost-effectiveness of a community-based rehabilitation intervention on quality of life among Chinese adults with hearing loss. We hope that it would help improve the well-being for Chinese adults and provide references in policy and practice for China and other countries. Trial registration Chinese Clinical Trial Registry ChiCTR1900024739. Registered on 26 July 2019.

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