Abstract TP365: Design of a Mobile-friendly Website to Reduce Stroke Caregiver Burden: a Focus Group Study

Background: Stroke is a leading cause of disability in the United States. Family members often have to assume the role of informal caregiver. Despite an abundance of resources, caregiver burden continues to be a major issue, leading to negative outcomes such as depression. Objective: To characterize the needs of stroke caregivers in order to inform the design of a mobile-friendly website intervention. We hypothesized that a website intervention, designed using a user-centered design approach, will help equip caregivers for the caregiving role and reduce associated caregiver burden. Methods: Focus groups with caregivers of stroke patients were conducted in English (N=3) and Spanish (N=4) to gather data on major obstacles experienced by caregivers. Participants were also asked about the challenging aspects of caregiving and their use of mobile devices. Results: Of seven total caregivers (86% Hispanic, 100% female, mean [SD] age=60 [9] years), 86% were smartphone users. The median (interquartile range) score on the short form Zarit Burden scale was 18 (12-20), indicating elevated caregiver burden in our sample. Across all participants, 100% cited lack of training as a major challenge, 86% cited financial difficulties and dealing with patient cognitive issues, 71% reported physical and emotional challenges, 43% participants cited time constraints and patient behavioral issues, and 29% reported problems with patient communication and acceptance of their situation. Using these findings, we designed a Stroke Caregiver Support System prototype by collecting existing resources from publically available sources based on the issues identified by our focus groups. Website usability testing was conducted to gather feedback caregivers and further refine our intervention. Conclusions: We plan a small pilot test of this intervention in our community to measure its usability and gather more feedback on acceptability and usefulness of the intervention. Given the prevalence of mobile and internet technology, we believe that a mobile-friendly website may be a practical and easily accessible tool for caregivers as they navigate their new roles.

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Exploratory and Confirmatory Factor Analysis of the Burden Scale for Family Caregivers-Short Form

The Family Journal ◽

10.1177/10664807211052478 ◽

2021 ◽

pp. 106648072110524

Author(s):

Rachel R. Tambling ◽

Carissa D’Aniello ◽

Beth S. Russell

Keyword(s):

Factor Analysis ◽

Confirmatory Factor Analysis ◽

Family Caregivers ◽

Exploratory Factor Analysis ◽

Caregiver Burden ◽

Short Form ◽

Research Attention ◽

Caregiving Burden ◽

Confirmatory Factor ◽

Burden Scale

Caregiver burden describes the physical, psychological, social, and financial demands of providing care to others. Caregiver burden has been investigated in general, and off-time caregiving often specific to chronic, recurring conditions. Despite the substantial research attention to caregiving burden, there have been few studies aimed establishing the psychometric evaluation of measurement tools used to measure the construct ( Pendergrass et al., 2018 ). Accurate measurement of caregiving burden is essential for studying the myriad effects on caregivers’ mental, physical, financial, and relational health. To begin to fill this gap, we conducted an exploratory factor analysis and a confirmatory factor analysis of the Burden Scale for Family Caregivers ( Pendergrass et al., 2018 ) in two distinct samples. Results of an exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) indicated a one factor solution. Implications for these findings on the study of caregiver burden are included.

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Do Caregiver Characteristics Affect Caregiver Burden Differently in Different Countries?

American Journal of Alzheimer s Disease & Other Dementias® ◽

10.1177/1533317518822047 ◽

2018 ◽

Vol 34 (3) ◽

pp. 148-152 ◽

Cited By ~ 1

Author(s):

Uwe Konerding ◽

Tom Bowen ◽

Paul Forte ◽

Eleftheria Karampli ◽

Tomi Malmström ◽

...

Keyword(s):

Family Caregivers ◽

Survey Data ◽

Informal Care ◽

Caregiver Burden ◽

Short Form ◽

Physical Problems ◽

Special Support ◽

Burden Scale ◽

Person With Dementia

The relationships between caregiver burden as measured with the Burden Scale for Family Caregivers–short form and 6 characteristics of caregivers caring for patients with dementia were investigated for caregivers from England (n = 36), Finland (n = 42), and Greece (n = 46) using survey data. In all 3 countries, caregiver burden increases with physical problems of the caregiver, emotional problems of the caregiver, and weekly hours of care. Hence, in all 3 countries, special support for informal care is required when these characteristics are at high levels. When the caregiver is a spouse or long-term partner of the person with dementia, lives in the same house as this person, or spends fewer than 20 h/wk for other duties than care, this is associated with less caregiver burden in England but with more caregiver burden in Greece. Accordingly, special support is required for Greek caregivers with these characteristics, but the opposite is true for English caregivers.

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A Community-Engaged Approach to Creating a Mobile HIV Prevention App for Black Women: Focus Group Study to Determine Preferences via Prototype Demos (Preprint)

10.2196/preprints.18437 ◽

2020 ◽

Author(s):

Rasheeta Chandler ◽

Natalie Hernandez ◽

Dominique Guillaume ◽

Shanaika Grandoit ◽

Desiré Branch-Ellis ◽

...

Keyword(s):

Black Women ◽

Hiv Prevention ◽

Focus Group ◽

Focus Groups ◽

The United States ◽

Mobile App ◽

Message Delivery ◽

Focus Group Study ◽

Hiv Prevention Intervention ◽

Hiv Epidemic

BACKGROUND Black women are an important but relatively overlooked at-risk group in HIV prevention efforts. Although there is an aggregate decline of HIV diagnoses among women in the United States, there are persistent disparate rates of new HIV infections among Black women compared to any other cisgender female subgroup. Strategies to end the HIV epidemic—as outlined in the Ending the HIV Epidemic initiative—for all communities must consider HIV prevention messaging and message delivery mediums that are created with community input. Although mobile health (mHealth) is a popular platform for delivering HIV interventions, there are currently no mobile apps that consider cisgender Black women with the goal of promoting a comprehensive women’s reproductive health and HIV prevention lifestyle. Previous research recommends inclusion of the target population from project inception and iteratively throughout development, to promote use of the intervention. OBJECTIVE The purpose of this study is to understand cisgender Black women’s preferences for functionality, format, and design of a mobile HIV prevention app and to examine their willingness to use an app for HIV prevention. METHODS We conducted a series of four focus groups with 23 Black cisgender women. Focus groups included discussion and demonstration elements to address cisgender women’s general preference for apps, HIV prevention content that would be useful in an app, and preferred app features that would promote use of an HIV-centric app. During focus group discussions, participants were shown narrated, custom wireframes of HIV prevention app prototypes to demonstrate potential app function. RESULTS Findings indicated the presence of eight subthemes within the coding structure of three overall themes: (1) health content within the mobile app, (2) mobile app functionality, format, and design, and (3) other suggested features. Specifically, participants detailed preferred educational content, content distribution, app aesthetics, privacy considerations, and marketing of the app. CONCLUSIONS Findings suggest that Black cisgender women preferred an app that integrated HIV prevention and optimal sexual health promotion. Participants provided a range of preferences for content integration and facilitators of app engagement with an HIV prevention app. Preferences centered on gender and cultural congruency of information and content, evidenced by visuals, language, and resources. Black cisgender women are viable consumers for a mobile app–based HIV prevention intervention.

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“If They Don’t Like You, They Are Not Going to Eat for You”: Individual and Interpersonal Factors Affecting Certified Nursing Assistants’ Ability to Provide Mealtime Assistance to Residents With Dementia

The Gerontologist ◽

10.1093/geront/gnaa145 ◽

2020 ◽

Author(s):

Joy W Douglas ◽

Seung Eun Jung ◽

Hyunjin Noh ◽

Amy C Ellis ◽

Christine C Ferguson

Keyword(s):

Focus Groups ◽

Communication Skills ◽

Caregiver Burden ◽

Health Care Professionals ◽

Family Members ◽

Skills Training ◽

The United States ◽

Nursing Assistants ◽

Certified Nursing Assistants ◽

Term Care

Abstract Background and Objectives In long-term care facilities in the United States, certified nursing assistants (CNAs) provide mealtime assistance to residents with dementia, a task that substantially increases caregiver burden due to the time and attention required. The aim of this qualitative study was to explore the individual and interpersonal barriers and facilitators CNAs experience when providing mealtime assistance to residents with dementia. Research Design and Methods Focus group questions were developed based on the corresponding levels of the Social Ecological Model. Using purposive sampling, 9 focus groups were conducted with 53 CNAs who had at least 1 year of experience as a CNA working with older adults. Focus groups were audio-recorded and transcribed verbatim. Data were analyzed using the directed content analysis approach. Results CNAs reported individual skills, training, and personal characteristics that affected their ability to provide mealtime assistance. At the interpersonal level, CNAs identified their relationships with residents, residents’ family members, and other health care professionals as factors that affect their ability to provide mealtime assistance. Discussion and Implications These findings provide evidence for strategies that administrators can utilize to reduce caregiver burden by improving the mealtime experience. First, CNAs need adequate training, particularly to develop communication skills. Developing verbal communication skills may improve interpersonal relationships between CNAs and residents’ family members and other coworkers. Developing nonverbal communication skills may foster an improved relationship between CNAs and their residents with dementia. Future research should evaluate interventions that seek to improve these skills to determine their impact on the mealtime experience.

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Program experiences of adults with autism, their families, and providers: Findings from a focus group study

Autism ◽

10.1177/1362361316679000 ◽

2017 ◽

Vol 22 (3) ◽

pp. 345-356 ◽

Cited By ~ 5

Author(s):

Kaitlin H Koffer Miller ◽

Mary Mathew ◽

Stacy L Nonnemacher ◽

Lindsay L Shea

Keyword(s):

Autism Spectrum Disorder ◽

Focus Groups ◽

The United States ◽

Autism Spectrum ◽

Program Improvement ◽

Spectrum Disorder ◽

Direct Care ◽

Care Staff ◽

Focus Group Study ◽

Adults With Autism

A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum disorder in two Medicaid-funded programs in Pennsylvania through focus groups. Researchers conducted 20 focus groups with a total of 36 adults with autism spectrum disorder, 32 family members, 32 direct care staff, and 20 program administrators. Using thematic analysis, we identified three themes: training needs, community engagement and socialization, and employment. There was a need for additional training to meet the varying needs of program participants including co-occurring diagnoses, sexuality, and long-term planning. Adults with autism spectrum disorder prioritized more individualized community activities based on their interests. Finally, barriers to and strategies for successful employment were discussed. It will be crucial for policy makers to utilize the findings to inform program improvement and development based on the experiences of individuals impacted by these services and systems directly. Additionally, researchers should use the findings from this study to design interventions for adults with autism spectrum disorder as it includes their voices.

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The caregiver burden in lupus: findings from UNVEIL, a national online lupus survey in the United States

Lupus ◽

10.1177/0961203316651743 ◽

2016 ◽

Vol 26 (1) ◽

pp. 54-61 ◽

Cited By ~ 6

Author(s):

S Al Sawah ◽

R P Daly ◽

S A Foster ◽

A N Naegeli ◽

K Benjamin ◽

...

Keyword(s):

Caregiver Burden ◽

Activity Index ◽

Short Form ◽

Work Productivity ◽

Well Being ◽

The United States ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Substantial Impact ◽

The Impact

Objectives: Lupus imposes a substantial burden on patients; however, little is known about its impact on those caring for patients with the disease. In this study, we examined the impact ‘caring for patients with lupus’ has on caregivers from their own perspective. Methods: UNVEIL was a one-time online national cross-sectional survey developed in partnership with the Lupus Foundation of America and fielded targeting the US Lupus Foundation of America constituents in 2014. Eligible caregivers were adults who self-identified as unpaid caregivers of patients with lupus. Eligible caregivers had to complete a series of sociodemographic questions as well as a series of well established outcome measures, such as the Short Form 12v2 Health Survey, the Work Productivity and Activity Index, the Caregiver Burden Inventory, and the Perceived Benefits of Caregiving Scale. Results: A total of 253 caregivers completed the survey. The majority of caregivers (90.1%) were aged 60 years or younger, more than half (54.2%) were men, and more than half (59.7%) identified themselves as either a spouse or a partner to the patient with lupus they were caring for. Overall health-related quality of life was close to the norm mean of the general US population. Caregivers who were employed missed an average of 12.8% of paid work time due to caregiving responsibilities and reported a 33.5% reduction in on-the-job effectiveness. Nearly half of the caregivers surveyed (49.4%) indicated that their caregiving responsibilities impacted their ability to socialize with friends, and almost all caregivers (97.6%) reported experiencing increased anxiety and stress in relation to their caregiving role. Conclusions: Caregiving for patients with lupus has a substantial impact on the work productivity and the social and emotional functioning of caregivers. Healthcare professionals and policymakers should continually assess the impact of healthcare decisions on the well-being of those caring for patients with lupus.

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EFEITO DO EXERCÍCIO FÍSICO SOBRE A SAÚDE E SOBRECARGA DE MÃES DE CRIANÇAS E ADOLESCENTES COM PARALISIA CEREBRAL

Revista Brasileira de Medicina do Esporte ◽

10.1590/1517-869220162203110588 ◽

2016 ◽

Vol 22 (3) ◽

pp. 222-226 ◽

Cited By ~ 1

Author(s):

Moisés Rosa Batista ◽

Jaqueline Pontes Batista ◽

Jussara Caetano Furtado ◽

Luiz Duarte de Ulhôa Rocha Junior ◽

Eduardo Henrique Tavares ◽

...

Keyword(s):

Caregiver Burden ◽

Short Form ◽

Sf 36 ◽

Burden Scale

RESUMO Introdução: A paralisia cerebral (PC) é considerada a incapacidade física mais comum na infância. Essa doença afeta profundamente a saúde e o bem-estar dos indivíduos acometidos e também pode influenciar múltiplos aspectos da vida de seus cuidadores, especialmente as mães. Objetivo: Avaliar o efeito de um programa de exercício resistido sobre a qualidade de vida relacionada à saúde (QVRS) de mães de crianças e adolescentes com PC. Método: Vinte e duas mães sedentárias cuidadoras de crianças e adolescentes com PC, aptas à prática de exercício resistido, participaram de um programa de exercício resistido de intensidade moderada, em 2 sessões semanais durante 12 semanas. Todos os participantes responderam ao questionário de QVRS, Short Form Questionnaire (SF-36), à escala de sobrecarga Caregiver Burden Scale (CBS) e ao Inventário de Depressão de Beck (BDI) antes e após o programa de intervenção. Os escores dos questionários pré e pós-intervenção foram comparados pelo teste de Wilcoxon e a magnitude das diferenças foi medida pelo tamanho do efeito. Resultados: A mediana de idade das mães foi de 41 anos e variou de 18 a 58 anos. A mediana da idade das crianças/adolescentes foi de 14 anos, variando 3 a 21 anos. Após a intervenção foram encontrados aumentos significativos nos escores do SF-36 (p < 0,05), exceto nos domínios aspectos físicos e aspectos emocionais, que já obtiveram pontuação máxima pré-intervenção. Os escores do CBS e do BDI tiveram redução significativa pós-intervenção (p < 0,05). Conclusão: A prática regular de exercícios resistidos tem impacto positivo sobre a QVRS, a percepção de sobrecarga e a intensidade de sintomas depressivos de mães cuidadoras de crianças e adolescentes com PC.

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A Community-Engaged Approach to Creating a Mobile HIV Prevention App for Black Women: Focus Group Study to Determine Preferences via Prototype Demos

JMIR mhealth and uhealth ◽

10.2196/18437 ◽

2020 ◽

Vol 8 (7) ◽

pp. e18437

Author(s):

Rasheeta Chandler ◽

Natalie Hernandez ◽

Dominique Guillaume ◽

Shanaika Grandoit ◽

Desiré Branch-Ellis ◽

...

Keyword(s):

Black Women ◽

Hiv Prevention ◽

Focus Group ◽

Focus Groups ◽

The United States ◽

Mobile App ◽

Message Delivery ◽

Focus Group Study ◽

Hiv Prevention Intervention ◽

Hiv Epidemic

Background Black women are an important but relatively overlooked at-risk group in HIV prevention efforts. Although there is an aggregate decline of HIV diagnoses among women in the United States, there are persistent disparate rates of new HIV infections among Black women compared to any other cisgender female subgroup. Strategies to end the HIV epidemic—as outlined in the Ending the HIV Epidemic initiative—for all communities must consider HIV prevention messaging and message delivery mediums that are created with community input. Although mobile health (mHealth) is a popular platform for delivering HIV interventions, there are currently no mobile apps that consider cisgender Black women with the goal of promoting a comprehensive women’s reproductive health and HIV prevention lifestyle. Previous research recommends inclusion of the target population from project inception and iteratively throughout development, to promote use of the intervention. Objective The purpose of this study is to understand cisgender Black women’s preferences for functionality, format, and design of a mobile HIV prevention app and to examine their willingness to use an app for HIV prevention. Methods We conducted a series of four focus groups with 23 Black cisgender women. Focus groups included discussion and demonstration elements to address cisgender women’s general preference for apps, HIV prevention content that would be useful in an app, and preferred app features that would promote use of an HIV-centric app. During focus group discussions, participants were shown narrated, custom wireframes of HIV prevention app prototypes to demonstrate potential app function. Results Findings indicated the presence of eight subthemes within the coding structure of three overall themes: (1) health content within the mobile app, (2) mobile app functionality, format, and design, and (3) other suggested features. Specifically, participants detailed preferred educational content, content distribution, app aesthetics, privacy considerations, and marketing of the app. Conclusions Findings suggest that Black cisgender women preferred an app that integrated HIV prevention and optimal sexual health promotion. Participants provided a range of preferences for content integration and facilitators of app engagement with an HIV prevention app. Preferences centered on gender and cultural congruency of information and content, evidenced by visuals, language, and resources. Black cisgender women are viable consumers for a mobile app–based HIV prevention intervention.

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Patient and caregiver perspectives on burnout in peritoneal dialysis

Peritoneal Dialysis International ◽

10.1177/0896860820970064 ◽

2020 ◽

pp. 089686082097006

Author(s):

Justin Oveyssi ◽

Karine E Manera ◽

Amanda Baumgart ◽

Yeoungjee Cho ◽

Derek Forfang ◽

...

Keyword(s):

United States ◽

Hong Kong ◽

Peritoneal Dialysis ◽

Focus Group ◽

Focus Groups ◽

The United States ◽

Daily Regimen ◽

Focus Group Study ◽

New Normal ◽

Increased Risk

Background: Peritoneal dialysis (PD) can offer patients more autonomy and flexibility compared with in-center hemodialysis (HD). However, burnout – defined as mental, emotional, or physical exhaustion that leads to thoughts of discontinuing PD – is associated with an increased risk of transfer to HD. We aimed to describe the perspectives of burnout among patients on PD and their caregivers. Methods: In this focus group study, 81 patients and 45 caregivers participated in 14 focus groups from 9 dialysis units in Australia, Hong Kong, and the United States. Transcripts were analyzed thematically. Results: We identified two themes. Suffering an unrelenting responsibility contributed to burnout, as patients and caregivers felt overwhelmed by the daily regimen, perceived their life to be coming to a halt, tolerated the PD regimen for survival, and had to bear the burden and uncertainty of what to expect from PD alone. Adapting and building resilience against burnout encompassed establishing a new normal, drawing inspiration and support from family, relying on faith and hope for motivation, and finding meaning in other activities. Conclusions: For patients on PD and their caregivers, burnout was intensified by perceiving PD as an unrelenting, isolating responsibility that they had no choice but to endure, even if it held them back from doing other activities in life. More emphasis on developing strategies to adapt and build resilience could prevent or minimize burnout.

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Efeitos de uma intervenção fisioterapêutica em grupo na sobrecarga e qualidade de vida de cuidadores familiares de pessoas com deficiência

Fisioterapia Brasil ◽

10.33233/fb.v12i5.935 ◽

2017 ◽

Vol 12 (5) ◽

pp. 336

Author(s):

Midiã Lins Silva Coutinho

Keyword(s):

Caregiver Burden ◽

Health Survey ◽

Short Form ◽

Short Form Health Survey ◽

Form Health ◽

Sf 36 ◽

Burden Scale ◽

Short Form Health

Introdução: A doença e/ou deficiência de um parente repercute em toda a família, mas a principal responsabilidade do cuidado recai sobre um único familiar, denominado cuidador principal. Objetivo: Analisar os efeitos de uma intervenção fisioterapêutica em grupo na sobrecarga e qualidade de vida de cuidadores familiares de pessoas com deficiência física, mental e/ou sensorial que praticam atividade motora adaptada. Material e métodos: Trata-se de um estudo quantitativo com desenho longitudinal do tipo coorte. Participaram do estudo 21 cuidadores. Foram aplicados dois instrumentos de avaliação (o Study 36-Item Short-Form Health Survey e o Caregiver Burden Scale) antes e após a intervenção. Os cuidadores foram acompanhados, durante 6 meses, com atividades que tiveram como objetivo a socialização e a percepção corporal através de exercícios respiratórios, associados ou não a movimentos ativos globais, alongamento da musculatura de tronco, cabeça e pescoço, membros superiores e inferiores e técnicas de relaxamento corporal. Resultados: Após a intervenção cuidadores apresentaram melhora significativa nos domínios vitalidade (p = 0,016) e saúde mental (p = 0,00048) do SF-36, e na dimensão tensão geral (p = 0,02) do Caregiver Burden Scale. Conclusão: Os cuidadores apresentaram melhora significativa nos domínios vitalidade e saúde mental do SF-36, e na dimensão tensão geral do Caregiver Burden Scale.Palavras-chave: cuidadores, qualidade de vida, família.

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