scholarly journals Using Life Story Techniques with Diverse Communities: Lessons Learned from a Focus Group Study

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 844-845
Author(s):  
Christa Wilk ◽  
Ashlee Cordell ◽  
Silvia Orsulic-Jeras ◽  
Sara Powers ◽  
Farida Ejaz ◽  
...  
Keyword(s):  
Focus Groups ◽  
Residential Care ◽  
Life Story ◽  
Early Stage ◽  
Well Being ◽  
Lessons Learned ◽  
Care Staff ◽  
Focus Group Study ◽  
Diverse Communities ◽  
Story Work

Abstract Providing high quality, cost-effective dementia care remains a major health challenge. Life story work, used in residential care settings, helps engage persons living with dementia (PWD) at a low cost with minimal staff burden. LifeBio, one such intervention, is designed to elicit life history data and care preference information through comprehensive life story interviews. LifeBio Memory, an adaptation of LifeBio, utilizes novel speech-to-text technology to process life story data more efficiently. Seven focus groups were conducted to evaluate the acceptability and feasibility of LifeBio Memory. Three types of focus groups were held (n=35) and audio recorded: 1) One group of early-stage PWDs (n=5); 2) Two groups of current and former users of original LifeBio (n = 12); and 3) Four groups of residential care staff and directors (n=18). Sessions were transcribed and thematic analyses were conducted. Findings indicated high levels of acceptability and feasibility of LifeBio Memory. Further, a secondary theme emerged signaling the need to prioritize the emotional safety of PWDs participating in life story work. This poster will discuss: 1) the life story interview process, 2) identifying PWDs who would most benefit from a life story program, 3) involving family and staff care partners to identify sensitive topics, 4) interview question design, selection and order, and 5) expanding life story work across diverse communities. Discussion will highlight the importance of protecting the emotional well-being of marginalized communities by identifying potential underlying traumas that could impact the safe delivery of otherwise effective life story interventions.

scholarly journals The Focus Group Must Go On: Lessons Learned from Conducting Virtual Focus Groups

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 844-844
Author(s):  
Ashlee Cordell ◽  
Christa Wilk ◽  
Silvia Orsulic-Jeras ◽  
Sara Powers ◽  
Farida Ejaz ◽  
...  
Keyword(s):  
Focus Group ◽  
Focus Groups ◽  
Life Story ◽  
Early Stage ◽  
Human Subjects ◽  
Lessons Learned ◽  
Community Dwelling ◽  
Care Staff ◽  
Alternative Methods ◽  
Virtual Setting

Abstract The Covid-19 pandemic has presented a multitude of challenges in conducting research with human subjects. In response, researchers have found creative ways to complete these studies using alternative methods that incorporate social distancing. Fortunately, numerous technologies exist today that allow individuals to connect with one another over short and long distances. The current study describes the development of LifeBio Memory: an app-based product that utilizes artificial intelligence and machine learning to improve an existing life story intervention designed for persons living with dementia (PWD). Seven focus groups (n=35), originally planned in-person, were successfully converted to a virtual setting. Groups were hosted using a Zoom platform, lasted 75-90 minutes (Mean = 85; SD = 5.3), and consisted of participants from 14 different states: One group of community-dwelling PWDs with early-stage dementia (n=5); two groups of current and former users of the original LifeBio program (n=12); and four groups of residential care staff and directors (n=18). Virtual focus group delivery was determined to be an acceptable and feasible alternative to traditional in-person formats. Topics discussed in this poster will include: 1) recruitment procedures, 2) screening protocols, 3) methods for sharing materials, 4) guidance for providing technology support, and 5) communication strategies to increase retention. Further discussion will focus on challenges faced when collecting data in a virtual setting, tips for successful facilitation, advantages to using virtual alternatives, and other lessons learned from the virtual field.

Ethical Issues in the Feeding of Patients Suffering from Dementia: a focus group study of hospital staff responses to conflicting principles

2002 ◽  
Vol 9 (6) ◽  
pp. 599-611 ◽  
Author(s):  
Stephen Wilmot ◽  
Lesley Legg ◽  
Janice Barratt
Keyword(s):  
Focus Groups ◽  
Ethical Issues ◽  
Hospital Staff ◽  
Care Staff ◽  
Ethical Principles ◽  
Focus Group Study ◽  
Feeding Difficulties ◽  
National Health Service Trust ◽  
Feeding Methods ◽  
Personal Attitudes

Feeding difficulties in older patients who are suffering from dementia present problems with balancing conflicting ethical principles. They have been considered by several writers in recent years, and the views of nursing and care staff have been studied in different contexts. The present study used focus groups to explore the way in which nursing and care staff in a National Health Service trust deal with conflict between ethical principles in this area. Three focus groups were convened, one each from the staff of three wards caring for patients with dementia. Case histories were discussed and transcripts analysed. It emerged that staff were aware of making fine judgements of utility concerning the spectrum of feeding methods available. Informants gave some weight to the principle of autonomy, but sought to balance that against their commitment to care. In explaining their perspectives, informants gave more weight to personal attitudes and trust culture than to professional ethics

scholarly journals Exploring good practice in life story work with people with dementia: The findings of a qualitative study looking at the multiple views of stakeholders

Dementia ◽  
2018 ◽  
Vol 19 (2) ◽  
pp. 182-194 ◽  
Author(s):  
Kate Gridley ◽  
Yvonne Birks ◽  
Gillian Parker
Keyword(s):  
Focus Groups ◽  
Life Story ◽  
Good Practice ◽  
Family Carers ◽  
People With Dementia ◽  
Practice Approach ◽  
Story Work ◽  
The Individual ◽  
Person With Dementia ◽  
Design And Methods

Introduction Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants); three with family carers (21 participants); and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion We produced nine key features of good practice which could be used to guide the life story work process. Key elements include the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.

The Development of the strain in dementia care scale (SDCS)

2015 ◽  
Vol 27 (12) ◽  
pp. 2017-2030 ◽  
Author(s):  
Anna-Karin Edberg ◽  
Katrina Anderson ◽  
Anneli Orrung Wallin ◽  
Mike Bird
Keyword(s):  
Factor Analysis ◽  
Residential Care ◽  
Outcome Measurement ◽  
Well Being ◽  
Critical Issue ◽  
Dementia Care ◽  
Residential Facilities ◽  
Care Staff ◽  
People With Dementia ◽  
Item Scale

ABSTRACTBackground:Though many staff gain satisfaction from working with people with dementia in residential facilities, they also experience significant stress. This is a serious issue because this in turn can affect the quality of care. There is, however, a lack of instruments to measure staff strain in the dementia-specific residential care environment, and the aim of this study, accordingly, was to develop the “Strain in Dementia Care Scale.”Methods:The instrument was developed in three steps. In the first step, items were derived from six focus group discussions with 35 nurses in the United Kingdom, Australia, and Sweden concerning their experience of strain. In the second step, a preliminary 64-item scale was distributed to 927 dementia care staff in Australia and Sweden, which, based on exploratory factor analysis, resulted in a 29-item scale. In the final step, the 29-item scale was distributed to a new sample of 346 staff in Sweden, and the results were subjected to confirmatory factor analysis.Results:The final scale comprised the following 27 items producing a five-factor solution: Frustrated empathy; difficulties understanding and interpreting; balancing competing needs; balancing emotional involvement; and lack of recognition.Conclusions:The scale can be used (a) as an outcome measurement in residential care intervention studies; (b) to help residential facilities identify interventions needed to improve staff well-being, and, by extension, those they care for; and (c) to generally make more salient the critical issue of staff strain and the importance of ameliorating it.

Intensive Interaction and discourses of personhood: A focus group study with dementia caregivers

Dementia ◽  
2018 ◽  
Vol 19 (6) ◽  
pp. 2018-2037
Author(s):  
Cheyann J Heap ◽  
Emma Wolverson
Keyword(s):  
Focus Groups ◽  
Critical Discourse Analysis ◽  
Residential Care ◽  
Social Power ◽  
Care Home ◽  
Dementia Care ◽  
Focus Group Study ◽  
People With Dementia ◽  
Medical Discourses ◽  
Paid Caregivers

Introduction Societal discourses of dementia are medicalised and dehumanising. This leads to a social problem: the loss of personhood in dementia care. The communication technique Intensive Interaction, however, honours personhood. The current study aimed to explore how paid caregivers of people with dementia enact societal discourses of dementia, with and without the context of Intensive Interaction. This was to explore ways to address the loss of personhood in dementia care. Method Paid caregivers from two residential care homes attended an Intensive Interaction training day. Caregivers participated in focus groups before and after training. Transcripts of the focus groups were analysed with Critical Discourse Analysis, an approach which relates discourse to social power. Results Before Intensive Interaction training, carers accessed medical discourses of loss, non-communication and lack of personhood. ‘Being with’ people with dementia was framed as separate to paid work. After training, caregivers accessed discourses of communication and personhood. Intensive Interaction reframed ‘being with’ people with dementia as part of ‘doing work’. Family caregivers were largely absent from discourses. Care home hierarchies and the industrialisation of care were barriers towards honouring personhood. Conclusions Medical discourses of dementia reinforce a status quo whereby interpersonal interactions are devalued in dementia care, and professional ‘knowledge’ (thereby professional power) is privileged over relationships. Intensive Interaction may enable paid caregivers to access person-centred discourses and related practices. However, this requires support from management, organisational structures, and wider society. More research is needed to identify ways to involve families in residential care and to explore the effects of using Intensive Interaction in practice.

Life story work with persons with dementia in nursing homes: A Grounded Theory study of the perspectives of care staff

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 282-302 ◽  
Author(s):  
Charlotte Berendonk ◽  
Vera Caine
Keyword(s):  
Grounded Theory ◽  
Nursing Homes ◽  
Life Story ◽  
Care Staff ◽  
Structured Interviews ◽  
Group Discussions ◽  
Grounded Theory Study ◽  
Story Work

In Germany, the use of life story work as an approach to care in nursing homes has not been implemented successfully. Using Grounded Theory, we explored care staff’s understandings of life story work when caring for persons with dementia. Thirty-six staff from seven nursing homes participated in semi-structured interviews or group discussions. In this paper we discuss new aspects and theoretical connections between understandings and practices of life story work. For some participants, obtaining ‘true facts’ about a resident’s course of life was considered the most important topic. Others highlighted the importance of narratives as well as embodied stories told by persons with dementia, as aspects that generated emotionally meaningful situations. Delivering sound life story work can be challenging for care staff working with persons with dementia. To enhance care in nursing homes, the importance of life story work needs to be further developed.

scholarly journals Public perceptions and experiences of social distancing and social isolation during the COVID-19 pandemic: a UK-based focus group study

BMJ Open ◽  
2020 ◽  
Vol 10 (7) ◽  
pp. e039334 ◽  
Author(s):  
Simon N Williams ◽  
Christopher J Armitage ◽  
Tova Tampe ◽  
Kimberly Dienes
Keyword(s):  
Mental Health ◽  
Focus Groups ◽  
Social Isolation ◽  
Social Engagement ◽  
Social Activity ◽  
Well Being ◽  
Public Perceptions ◽  
Focus Group Study ◽  
Social Distancing ◽  
Early Stages

ObjectiveThis study explored UK public perceptions and experiences of social distancing and social isolation related to the COVID-19 pandemic.DesignThis qualitative study comprised five focus groups, carried out online during the early stages of the UK’s stay at home order (‘lockdown’), and analysed using a thematic approach.SettingFocus groups took place via online videoconferencing.ParticipantsParticipants (n=27) were all UK residents aged 18 years and older, representing a range of gender, ethnic, age and occupational backgrounds.ResultsQualitative analysis revealed four main themes: (1) loss—participants’ loss of (in-person) social interaction, loss of income and loss of structure and routine led to psychological and emotional ‘losses’ such as loss of motivation, loss of meaning and loss of self-worth; (2) criticisms of government communication—participants reported a lack of trust in government and a lack of clarity in the guidelines around social distancing and isolation; (3) adherence—participants reported high self-adherence to social distancing guidelines but reported seeing or hearing of non-adherence in others; (4) uncertainty around social reintegration and the future—some participants felt they would have lingering concerns over social contact while others were eager to return to high levels of social activity.Most participants, and particularly those in low-paid or precarious employment, reported feeling that the social distancing and isolation associated with COVID-19 policy has had negative impacts on their mental health and well-being during the early stages of the UK’s ‘lockdown’.ConclusionsA rapid response is necessary in terms of public health programming to mitigate the mental health impacts of COVID-19 social distancing and isolation. Social distancing and isolation ‘exit strategies’ must account for the fact that, although some individuals will voluntarily or habitually continue to socially distance, others will seek high levels of social engagement as soon as possible.

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

Autism ◽  
2017 ◽  
Vol 22 (3) ◽  
pp. 345-356 ◽  
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.

scholarly journals Covid-fatigued? A longitudinal study of Norwegian older adults’ psychosocial well-being before and during early and later stages of the COVID-19 pandemic

2021 ◽  
Author(s):  
Thomas Hansen ◽  
Thomas Sevenius Nilsen ◽  
Marit Knapstad ◽  
Vegard Skirbekk ◽  
Jens Skogen ◽  
...  
Keyword(s):  
Older Adults ◽  
Mixed Models ◽  
Early Stage ◽  
Well Being ◽  
Lessons Learned ◽  
Older Individuals ◽  
Single Item ◽  
Psychosocial Impacts ◽  
Public Health Survey ◽  
Second Wave

AbstractAs the pandemic continues, many older adults are facing prolonged isolation and stress while having less access to traditional ways of coping. There is widespread concern that the situation is increasingly taking its toll on older adults’ psychological and social well-being. We use linear mixed models to examine psychosocial impacts and predictors thereof among older Norwegians in early and later stages of the pandemic. Longitudinal data were collected online in the Norwegian Counties Public Health Survey right before the pandemic and in June and November–December 2020 in two counties (baseline n = 4,104; age 65–92). Outcomes include loneliness (single item, UCLA3), psychological ill-being (worried, anxious, depressed), and psychological well-being (satisfied, engaged, happy). From before to three months into the pandemic men’s psychosocial well-being remained stable, whereas women’s slightly declined. Five months later we observe broad and substantial declines in psychosocial well-being. These impacts disproportionately affect women (all outcomes) and single and older individuals (loneliness only) and are not moderated by educational level, urbanicity, or whether self or partner are reported “at risk” due to health problems. Pre-pandemic low social support and high psychological distress predict relatively improved psychosocial well-being. Older Norwegians seemed to manage the pandemic’s early stage without clear psychosocial impacts. However, we observe notably compromised well-being during the second wave of COVID-19 in late 2020. Lessons learned about the nature and distribution of the psychosocial impacts of prolonged health-threats and social distancing provide valuable knowledge for intervention design during this and future pandemics.

scholarly journals Psychosocial interventions for dementia: from evidence to practice

2014 ◽  
Vol 20 (5) ◽  
pp. 340-349 ◽  
Author(s):  
Bhamini Patel ◽  
Mark Perera ◽  
Jill Pendleton ◽  
Anna Richman ◽  
Biswadeep Majumdar
Keyword(s):  
Life Story ◽  
Psychological Symptoms ◽  
Psychosocial Interventions ◽  
Well Being ◽  
Evidence Base ◽  
List Type ◽  
Pharmacological Agents ◽  
People With Dementia ◽  
Carer Support ◽  
Story Work

SummaryThis article presents evidence for the efficacy of psychosocial interventions for people with dementia and their carers. The evidence base is not yet robust enough to clearly suggest which interventions are most suited for which environment. However, from our literature review there appears to be reason to use music therapy, aromatherapy, life story work, animal-assisted therapy and post-diagnosis/carer support work. We focus on both the traditional outcome measures of behavioural and psychological symptoms of dementia (BPSD) and the more difficult to measure, but equally important, person-centred outcomes of nonpharmacological interventions, as their properties are distinctly different from those of pharmacological agents.Learning Objectives•Be aware of the range of psychosocial interventions.•Have a better understanding of the possible outcomes from given interventions.•Be aware of the paradigm shift from managing BPSD to a person-centred approach that focuses on the patient's well-being and quality of life.

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