The 4th International NCCS & EACS Conference April 27th – 28th 2022 at Mälardalen University, Sweden Caring in a changing world, Symposium
Papers presented as abstracts below:
Caring in the Community: An Exploration of Senior Adults Perspectives of Homecare in the UK: A Participatory Research Approach
Mavis Bengtsson PhD cand, RN
Co-authors: Dr Liz Norton PhD RN, Prof. Annelise Norlyk PhD RN, Prof. Ann Hemingway PhD RN.
Background: The UK, like many countries, has an increasing population of older people who are living with a complex array of chronic conditions, which subsequently affects their well-being and hence increases the need for care. Furthermore, research shows that older adults feel excluded from decision making regarding their homecare and express fear of losing control. There is growing evidence that participatory research (PR) may help understand and address some of the complex health and social issues older people face while, at the same time, contributing to individual and community well-being.
Aim: to explore Senior Adults’ perceptions of homecare and collaborate with them to develop principles that underpin homecare.
Method: The research is a qualitative design with a participatory research approach. Purposive sampling was done. The inclusion criterion was people aged +50 years. We had 14 participants for individual interviews and focus groups. Braun and Clarke Thematic Analysis is used for data analysis.
Results: One of the findings show, “It used to be natural to have children born at home. It should be a lot more natural that people die at home.” Home is an essential place for care and has multiple complex meanings from older people. Meanings show how unique and diverse older people are and not a homogenous group. Their individuality and diversity are identified when understanding older person’s meaning from their perception of home as a place of care.
Conclusion: Our research shows that home matters for an older person as a preferred place of care and can, therefore, enhance an older person’s well-being and dignity. As a result, an older person should guide decisions for their preferred place of care.
Implication for Caring in a Changing World: Respecting and understanding an older person’s choice to be cared for at home can enhance their dignity and well-being during care.
What matters for older adults when using innovative technologies in healthcare
Moonika Raja
Health ministries in Europe are investigating more and more in digitalisation and this impacts older adults. Existing research claims an age-related digital divide, older adults tend to lag behind in using and benefitting from digital technology. I would like to talk about what older adults in Europe have experienced when using digital technology and telehealth systems. Findings about different barriers and facilitators when using digital technology. “Take home” message: There should be a balance between the potential benefits and the effort required when starting to use new innovative technologies in healthcare and devices should respect older persons` privacy.
“What matters in older person care in a changing world”
Abstract
Based on findings from an ethnographic study, I focus on the strategies employed by a married couple living in a private, UK-based care home as they navigate their care setting to uphold a sense of home and intimacy. The insights and priorities of this couple help to explore and blur the distinction between private space and public space in the care home. Drawing from the experiences and stories of residents to highlight what matters in older person care offers insight on the impacts of the pandemic-based regulations in shaping, or sustaining, our current care home environment. Now we must ask how these experiences may help us think about the impacts that the care home space may have on residents’ well-being and sense of dignity moving forward.
Caring in a rapidly changing world: Older adults` experiences of dignity within digitally-led healthcare in Norway
Moonika Raja1, MA, ESR, PhD Student
Co-Authors: Professor Lisbeth Uhrenfeldt1, Associate Professor Ingjerd Gåre Kymre1,1Faculty of Nursing and Health Sciences, Nord University, Bodø, Norway
Background: Scandinavian countries are recognised for leading the way in innovative digital technologies in healthcare. Older adults who have not grown up with digital innovations are expected to keep pace with technological shifts as much as other age groups. This situation may impact their dignity and well-being and thereby challenge caring in a changing world.
Aim: To clarify the phenomenon of sense of dignity experienced in older adults, in how their expectations and needs are met within digitally-led healthcare in Norway.
Method: Purposive, in-depth interviews were conducted with thirteen older adults from Northern Norway, living at home and not receiving consistent assistance. A Reflective Lifeworld Research design was used.
Results: Older adults experience that using new digital healthcare systems makes them feel a new kind of dependence on other people and that affects their experience of dignity. They are met with expectations from the society, that they acquire new skills and understand technical language promptly, which they often struggle to achieve. They, in turn, expect digitally-led healthcare to give them a sense of safety, but feel insecure about privacy and loss of the possibility of having dialog with healthcare providers.
Conclusion: The phenomenon of sense of dignity experienced in older adults, in how their expectations and needs are met within digitally-led healthcare, indicates a sense of feeling lost in the digital world. This impacts their experience of personal dignity, as loss of dignity is noticed especially in its rupture.
Implication for caring in a changing world: The results indicate that if older adults are more informed about technologies and endowed with the necessary digital skills, they are better able to see digitally-led healthcare as an opportunity.
Moving Fast, Moving Slow: Well-being and Temporality in Nursing Home Care
Emma Jelstrup Balkin, Aalborg University
Co-authors: Mette Grønkjær, Aalborg University; Mette Geil Kollerup, Aalborg University; Bente Martinsen, Århus University; Ingjerd Gåre Kymre, Nord University
Abstract
Based on ethnographic fieldwork in two nursing homes in Northern Denmark this paper will explore the experience of time and its impact on well-being for oldest old residents (85+ years). In the nursing home, time has a quality of amorphous duality. To the residents, the days typically feel long, and though they are structured by institutional routines, for many they lack meaningful content. In contrast to these long, languid hours, care staff experience time as a scarce resource. They often describe themselves as running against the clock. These dichotomous experiences of time as both accelerated and retarded open a space in which we can probe temporal aspects of well-being. On the back of increasing bureaucratic demands, care staff routinely justify care deficiencies as the result of a lack of time. Residents respond to the busy signals of staff by lowering their expectations for care.
Using the term “care time” we explore the multiple meanings of time in old age care. For oldest old residents, care time is about creating meaningful moments of connection in time. For staff, care time is a list of tasks to complete before the shift ends. Based on ethnographic findings, this paper will consider the effects of different concepts of time on resident well-being. Arguing that in very old age the present moment is key to experiences of well-being, this paper will ultimately ask whether it may be possible to structure care time differently to increase resident well-being into the future.
Negotiated relations: Centering care recipients’ voices in ethnographic research in a residential care community during COVID-19
Conference paper presentation: The Royal Anthropological Institute Mobilising Methods in Medical Anthropology
https://www.therai.org.uk/conferences/mobilising-methods-in-medical-anthropology-2022
18th -22nd January 2022, virtual conference
Author: Jayme Tauzer, Birmingham City University
Short abstract: This paper explores the barriers to, and promises of, the use of negotiated process consent to include older adults with varying cognitive capacities in ethnographic research in the care home setting during the COVID-19 pandemic.
“I’m a bit scared of signing that…”: Ethics on the ground
Conference paper presentation: The Royal Anthropological Institute Mobilising Methods in Medical Anthropology , 18th -22nd January 2022, virtual conference
Presenter: Emma Jelstrup Balkin, anthropologist, PhD candidate, Aalborg University, Denmark
Co-authors: Mette Grønkjær, Aalborg University; Mette Geil Kollerup, Aalborg University; Bente Martinsen, Århus University; Ingjerd Gåre Kymre, Nord University
Short abstract: This paper questions the impact of formal ethics requirements on research with very old, vulnerable nursing home residents, ultimately asking whether a one-size fits all approach to ethics is at odds with ensuring a truly ethical approach to ethnographic research. https://www.therai.org.uk/conferences/mobilising-methods-in-medical-anthropology-2022
Accessing a “bounded space”: An Ethnographic map of a residential care home for older persons during COVID-19.
Architecturemps :Environments by Design Conference 2021
https://amps-research.com/venue-environments-by-design/
1-3 December 2021, Virtual event
Author: Jayme Tauzer, Birmingham City University
Abstract: Taking place in a residential care home in England during COVID-19, this ethnographic project offers a closer look at residents’ experiences of residential care. Understanding care as upholding experiences of wellbeing, this project turns to experiences and stories to reveal complexities and contradictions in the space of residential care. This paper maps the design of this project and its ‘journey’ toward, and then into, the field. The arc of this process helps to understand the ‘boundedness’ of the care home, especially, but not exclusively, during the global COVID-19 pandemic.
Gendered experiences of providing informal care for older people: a systematic review and thematic synthesis
Conference poster presentation: Virtual ISPRM Congress “Furthering Rehabilitation in a New World” 12-15 June 2021
Presenter: Ioanna Zygouri, PhD candidate, MSc Neuropsychology, Department of Medicine, University of Ioannina, Greece
Co-authors: Fiona Cowdell, Avraam Ploumis, Mary Gouva & Stefanos Mantzoukas
Background and aims
The caregiving’s impact on informal carers’ quality of life and gender-based stereotypes make older individuals’ informal care a complex process for which our knowledge is still limited. The purpose of this review is to identify how gender relates to informal carers’ experiences of providing care for people aged 60years and over with mental and physical health needs by synthesising the available empirical data published between 2000 to 2020.
Methods
The systematic method for reviewing and synthesising qualitative data was performed using the Preferred reporting items for systematic review and meta-analysis. (PRISMA) guidelines. The Critical Appraisal Skills Programme (CASP) was used to examine the quality of the included papers. Thematic synthesis was used as the methodological framework.
Results
While informal caregivers share motivators, a linkage between traditional gender stereotypes impacts women’s and men’s caregiving burden and coping strategies. Informal carers’ experiences entail a constant pursuit of self-agency after acquiring the caregiver role. Cultural values and their intersection with gender appear to influence caregivers’ healthy adjustment into their new caregiving identities. The flexibility to move beyond gender boundaries could mediate caregivers’ negotiations between self and society on developing their new caregiving identity.
Digital Developments in Society That Persons 75 Years and Older Have Been Part of: A Scoping Review
Conference oral presentation: The Gerontological Society of America`s Annual Scientific Meeting https://www.gsa2021.org/ , 10-13 November 2021
Presenter: Moonika Raja, PhD candidate, MA, Faculty of Nursing and Health Sciences, Nord University, Bodø, Norway
Co-authors: Jorunn Bjerkan, Norway; Ingjerd G. Kymre, Norway; Kathleen T. Galvin, United Kingdom; Lisbeth Uhrenfeldt, Norway
The population in Europe is ageing and people are becoming more than ever dependent on digital technologies. The present study aims to map relevant evidence about digital developments in society involving people aged 75 and over in European countries. It focuses on their experiences and the main barriers to, and facilitators of, societal digital demands. Scoping reviews can be used when the purpose is to identify types of available evidence and clarify concepts, this process was guided by a framework proposed by Arksey and O`Malley. The studies included in the review covered digital technology, digital devices and telehealth, and the context covered participants` own home or surroundings. A comprehensive search was made on CINAHL, Embase, Pubmed/MEDLINE, Scopus and Open Grey. Out of 727 identified citations, 13 sources which met the inclusion criteria (9 original study articles, 2 theses, 1 letter about a product and 1 project report). The studies included varied in their focus, design and location. Older European citizens have experienced technology making life easier and the opposite. The outstanding facilitator found was that technology should be easy to use. Interestingly, both social support and lack of social support were found as facilitators of using new technology and difficulty in remembering the instructions was seen as an important barrier. As technology develops rapidly, there is a need for new and additional research among older European citizens. Future research should cover participants` access to the devices, social support and the technical solutions most relevant to older people today.
Conference oral presentation: RCN International Nursing Research Conference 2021, 7 – 9 September 2021, Virtual event , Abstract no: 0206
A systematic literature review of older individuals’ experiences of care and wellbeing during Acquired Brain Injury physical rehabilitation.
Presenter: Panagiota Lafiatoglou, PhD candidate, RN, MSc, Department of Nursing, University of Ioannina, Greece
Co-author(s): Caroline Ellis-Hill, UK; Mary Gouva, Greece; Avraam Ploumis, Greece; Co-author(s): Stefanos Mantzoukas, Greece.
Abstract
Background: Acquired brain injury (ABI) is one of the most common neurological diseases with older people being one of the most affected age groups (Jones et al., 2011). ABI’s consequences may include mild to severe functional changes, leading to psychosocial difficulties for individuals (Giustini et al., 2013). Given the impending increase in aging populations and the fact that ABI is often a life-changing condition, rehabilitation for older individuals needs to focus more on their potential to live well. Therefore, the concept of wellbeing during rehabilitation and nursing care for older individuals with ABI becomes quite salient deserving greater consideration.
Aim: To gain an understanding of how older individuals diagnosed with ABI conceptualise and experience wellbeing during physical rehabilitation.
Method: The review was conducted following the PRISMA protocol and was led by a PEOT question. Databases included: PubMed, CINAHL Plus, APA PsycInfo, ASSIA, and SCOPUS. The quality of selected studies was appraised using the Critical Appraisal Skills Programme (CASP) tool. The synthesis methods drew on the “thematic synthesis” approach (Thomas and Harden, 2008).
Results: Fourteen qualitative studies published between 2005-2020, met the inclusion criteria. Four themes were identified, indicating the following findings: Organisational and structural care deficiencies can adversely impact older individuals’ autonomous decision-making and goal setting potentials. The discrepancy between older individuals’ expectations and the reality of returning home can further negatively affect their sense of wellbeing. Constructive communication, family involvement, and creating a stimulating, enriching social environment can increase wellbeing through humanising older individuals’ response to their post-ABI reality.
Conclusion: The review reveals the scarcity of qualitative research into older individuals’ ABI rehabilitation experiences. The findings indicate the need to further examine the significance of humanising care and the factors that affect older individuals’ sense of wellbeing.
