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Supporting identity and relationships amongst people with dementia through the use of technology: a qualitative interview study.

ABSTRACT: Meaningful activities in dementia care can promote the co-construction of narrative identity in caregiving relationships, helping to preserve the sense of self in people with dementia.Purpose: Informed by symbolic interactionism and Deweyan transactionalism, the aim of this study was to develop a transactional model of how narrative identity and relationships are promoted through the use of a new technological solution, SENSE-GARDEN, that uses digital technologies and multisensory stimuli to facilitate individualized, meaningful activities.Method: We conducted a qualitative interview study to explore the experiences of people with moderate to advanced dementia and their caregivers in Norway and Portugal. After using SENSE-GARDEN for 12-16 weeks, 20 participants (7 persons with dementia and 13 caregivers) were interviewed. The interviews were analysed using reflexive thematic analysis.Results: Three themes were generated: openness, learning, and connection. Findings suggest that SENSE-GARDEN can stimulate emotional experiences, preserve narrative identity, and foster interpersonal relationships. These findings are illustrated through a transactional model.Conclusion: This study highlights the complex multitude of factors affecting person-environment interactions in which narrative identity and relationships are constructed. To better understand these factors, future work should adopt a holistic approach to studying new methods of creating meaningful activities in dementia care.

SUBMITTER: Goodall G

PROVIDER: S-EPMC8118425 | biostudies-literature | 2021 Dec

REPOSITORIES: biostudies-literature

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Supporting identity and relationships amongst people with dementia through the use of technology: a qualitative interview study.

Goodall Gemma G André Lara L Taraldsen Kristin K Serrano J Artur JA

International journal of qualitative studies on health and well-being 20211201 1

Meaningful activities in dementia care can promote the co-construction of narrative identity in caregiving relationships, helping to preserve the sense of self in people with dementia.<b>Purpose</b>: Informed by symbolic interactionism and Deweyan transactionalism, the aim of this study was to develop a transactional model of how narrative identity and relationships are promoted through the use of a new technological solution, SENSE-GARDEN, that uses digital technologies and multisensory stimuli ...[more]

PMID: 33955324

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Project description:BackgroundExamining ways to support persons with dementia and their caregivers to help minimize the disease's impact on individuals, families, and society is critical. One emerging avenue for support is technology (eg, smartphones and smart homes).ObjectiveGiven the increasing presence of technology in caregiving, it is pertinent to appreciate whether and how technology can be most useful to a care partner's everyday life. This study aims to further understand care partner technology use, attitudes, and the potential role of off-the-shelf technologies (eg, smartphones and smart homes) in supporting caregiving from the perspective of care partners for persons with dementia.MethodsWe conducted a telephone cross-sectional survey using random digit dialing with 67 self-identified care partners of persons with dementia across one Canadian province. Participants were asked about attitudes toward technology, barriers to and facilitators for technology use, technology use with caregiving, and demographic information. Eight open-ended questions were analyzed using content analysis; 2 closed-ended questions about comfort with and helpfulness of technology (rated on a scale of 1 to 10) were analyzed with frequencies. From these data, an in-depth semistructured interview was created, and 10 (15%) randomly sampled care partners from the initial collection of 67 care partners were interviewed approximately 1 year later, with responses analyzed using content analysis.ResultsFrequency analysis rated on a scale of 1 to 10 suggested that care partners were comfortable with technology (wearable technology mean 7.94, SD 2.02; smart home technology mean 6.94, SD 2.09), although they rated the helpfulness of technology less strongly (mean 5.02, SD 2.85). Qualitatively, care partners described using technology for functional tasks and some caregiving. Barriers to technology use included cost, lack of knowledge, security or privacy concerns, and undesirable features of technology. Facilitators included access to support and the presence of desirable features. Some care partners described merging technology with caregiving and reported subsequent benefits. Others stated that technology could not be adopted for caregiving due to the degree of impairment, fear of negative consequences for the person living with dementia, or due to incongruity with the caregiving philosophy. Furthermore, care partners noted that their technology use either increased or was unchanged as they moved through the COVID-19 pandemic.ConclusionsThe 2 analyses were conducted separately, but there was notable overlap in the data, suggesting temporal stability of identified content. Both analyses suggested care partners' relative comfort with technology and its use, but other care partners noted concerns about integrating technology and caregiving. Care partners' reports of increased technology use throughout the COVID-19 pandemic may also suggest that the pandemic impacted their perceptions of the usefulness of technology, being influenced by the requirements of their reality. Future investigations should examine how to support care partners in adopting relevant technology.

Project description:BackgroundStudents may be the first to recognise and respond to psychological distress in other students. Peer support could overcome medical student reluctance to seek help despite their high rates of mental ill-health. Yet, despite the adoption of peer support programs, there is little evidence of impact on students. Peer support programs may assume that medical students accept and view peer support positively. We explored these assumptions by asking students about their experiences and views on peer support.MethodsQualitative semi-structured interviews exploring peer support experiences and views on peer support were conducted with ten medical students at two contrasting medical schools. Informed by a constructivist stance, interview transcripts underwent thematic analysis.ResultsThree groups of themes were identified: participants' experiences of peer support encounters, concerns about providing support, and views on students' roles in peer support. Participants readily recalled signs of peer distress. Encounters were ad hoc, informal, and occurred within relationships based on friendship or by being co-located in the same classes or placements. Concerns about initiating and offering support included lack of expertise, maintaining confidentiality, stigma from a mental health diagnosis, and unclear role boundaries, with implications for acceptance of student roles in peer support.ConclusionsOur study emphasised the centrality of social relationships in enabling or discouraging peer support. Relationships developed during medical studies may anticipate the collegial relationships between medical professionals. Nevertheless, only some students are willing to undertake peer support roles. We suggest different strategies for promoting informal peer support that can be offered by any student, to those promoting formal support roles for selected students. Future research focusing on the impact for both the students who receive, and on the students who provide peer support is called for.

Project description:BackgroundGreenspace programmes are health projects run outside in nature, typically with the aim of improving mental health. Research suggests that programmes may also be effective in supporting people with problem substance use (PSU), but there is limited understanding of the key components that make them successful for this client group. Previous work has claimed that a realist-informed intervention framework for greenspace programmes for mental health could be transferable to programmes that support people with PSU, and that this could provide insight into the causal processes within programmes. However, this claim is yet to be explored in depth. The aim of this study was to further test, refine, and consolidate the proposed framework to show how greenspace programmes could support people with PSU.MethodsUsing a realist approach, 17 participants (8 programme staff; 9 wider stakeholders) were interviewed about contexts, mechanisms, and outcomes (CMOs) relative to greenspace programmes for mental health and PSU. Semi-structured interviews were used since they facilitated exploration of the proposed framework but were flexible enough to allow identification of new CMOs for framework refinement. Interviews were audio-recorded, fully transcribed, and analysed inductively and deductively against the proposed framework.ResultsFindings supported the proposed framework and indicated that greenspace programmes support people with poor mental health and PSU due to: feelings of escape; space to reflect; physical activity; self-efficacy; feelings of purpose; relationships; and shared experiences. However, data showed that programmes must also consider: explicit intervention focus to ensure adequate support for clients; existing challenges with funding and stakeholder buy-in; and the impact of COVID-19. Findings allowed development of a refined framework that shows how greenspace programmes can support people with PSU.ConclusionThe findings of this project are theoretically novel and have practical relevance for those designing greenspace programmes by providing recommendations on how to optimise, tailor, and implement future interventions. Findings could be particularly relevant for academic researchers, multidisciplinary health professionals, and for those working in the third sector, developing and delivering greenspace programmes for people to improve their mental health and to support them with PSU.

Project description:BackgroundDementia is an irreversible chronic disease with wide-ranging effects on patients', caregivers' and families' lives. Hospitalizations are significant events for people with dementia. They tend to have poorer outcomes compared to those without dementia. Most of the previous studies focused on diagnoses leading to hospitalizations using claims data. Further factors (e.g. context factors) for hospitalizations are not reproduced in this data. Therefore, we investigated the factors leading to hospitalization with an explorative, qualitative study design.MethodsWe interviewed informal caregivers (N = 12), general practitioners (GPs, N = 12) and formal caregivers (N = 5) of 12 persons with dementia using a semi-structured interview guideline. The persons with dementia were sampled using criteria regarding their living situation (home care vs. nursing home care) and gender. The transcripts were analyzed using the method of structuring content analysis.ResultsAlmost none of the hospitalizations, discussed with the (in-)formal caregivers and GPs, seemed to have been preventable or seemed unjustifiable from the interviewees' points of view. We identified several dementia-specific factors promoting hospitalizations (e.g. the neglect of constricted mobility, the declining ability to communicate about symptoms/accidents and the shift of responsibility from person with dementia to informal or formal caregivers) and context-specific factors promoting hospitalizations (e.g. qualification of nursing home personal, the non-availability of the GP and hospitalizations for examinations/treatments also available in ambulatory settings). Hospitalizations were always the result of the interrelation of two factors: illnesses/accidents and context factors. The impact of both seems to be stronger in presence of dementia.ConclusionsPoints for action in terms of reducing hospitalization rates were: better qualified nurses, a 24-h-GP-emergency service and better compensation for ambulatory monitoring/treatments and house calls. Many hospitalizations of people with dementia cannot be prevented. Therefore, hospital staffs need to be better prepared to handle patients with dementia in order to reduce the negative effects of hospitalizations.

Project description:People with dementia (PwD) are at risk of experiencing loneliness, which is associated with physical and mental health difficulties [1]. Technology is a possible tool to increase social connection and reduce loneliness. This scoping review aims to examine the current evidence regarding the use of technology to reduce loneliness in PwD. A scoping review was carried out. Medline, PsychINFO, Embase, CINAHL, Cochrane database, NHS Evidence, Trials register, Open Grey, ACM Digital Library and IEEE Xplore were searched in April 2021. A sensitive search strategy was constructed using combinations of free text and thesaurus terms to retrieve articles about dementia, technology and social-interaction. Pre-defined inclusion and exclusion criteria were used. Paper quality was assessed using the Mixed Methods Appraisal Tool (MMAT) and results reported according to PRISMA guidelines [2,3]. 73 papers were identified publishing the results of 69 studies. Technological interventions included robots, tablets/computers and other forms of technology. Methodologies were varied and limited synthesis was possible. There is some evidence that technology is a beneficial intervention to reduce loneliness. Important considerations include personalisation and the context of the intervention. The current evidence is limited and variable; future research is warranted including studies with specific loneliness outcome measures, studies focusing on PwD living alone, and technology as part of intervention programmes. Author summary More people are now living with dementia than ever before. People with dementia often experience loneliness. There has been increasing interest in using technology to help people with dementia connect with others and feel less lonely. Here we have searched for studies about people with dementia using technology for social interaction. We wanted to see what technologies are being used and if they are helpful or not. We found that there is a wide variety of types of technology being used to help social interaction for people with dementia. Types of technology included robots, tablet and desktop computers and a wide variety of other technologies. The studies we found used a diverse range of methods to see if the technology was helpful. Overall we found that technology could be a useful tool to help reduce loneliness in people with dementia. However there needs to be more research into this area. Future research could focus on helping people with dementia who live alone, and using technology as one part of broader intervention programmes.

Project description:Background: Dementia does not merely affect individuals, the carer and the person living with dementia, but also has a profound impact on their spousal relationship. As such, this study aimed to gain a deeper understanding of how dementia affects spousal relationships with a focus on interpersonal (i.e. relationship adjustment, communication engagement and emotional connection between two individuals) and intrapersonal (i.e. loss of self within the context of relationships) dynamics using a qualitative approach. The study also explored how carers adapt to such relationship challenges in the context of dementia care.Methods: A phenomenological approach was used to capture the subjective experiences of female spousal carers, who regularly support their partner living with dementia. A total of nine semi-structured interviews were conducted.Results: Relationship adjustment theme highlighted how learning to acknowledge role shifts from a spouse to a carer is critical for carers to manage relationship difficulties. Emotional connection theme demonstrated the importance of reminiscing about the shared history between dyads to cope with feelings of loss of affective intimacy. Communication engagement theme revealed carers' need to learn a new way of communicating due to the decrease in meaningful communication and two-way interaction. Sense of self theme highlighted the importance of self-compassion to overcome feelings of self-loss and isolation.Conclusion: Findings suggest that improving the relationship between female spousal carers and their partner living with dementia may require targeted interventions addressing different factors. Such interventions can include a couple's life story approach to enable couples to reminisce about their shared experiences, interactive communication training to enhance meaningful engagements, and a psychological approach such as compassion-focused therapy to overcome emotional challenges and facilitate self-compassion.

Dataset Information

Supporting identity and relationships amongst people with dementia through the use of technology: a qualitative interview study.

Publications

Supporting identity and relationships amongst people with dementia through the use of technology: a qualitative interview study.

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