A qualitative study of family members' perspectives regarding decision-making for nursing home residents' care.

PURPOSE: We explored how family caregivers perceive decision-making regarding the care of nursing home residents. METHODS: This qualitative study used Flemming's Gadamerian-based research method. In person semi-structured interviews about decision-making concerning residents' care were conducted with 13 family members (nine women, four men) of residents of three Norwegian nursing homes. FINDINGS: The following themes emerged: Excessive focus on autonomy threatens resident wellbeing and safety. Resident wellbeing is the caregiver's responsibility. Resident wellbeing serves as a guiding principle. CONCLUSIONS: The family members of residents and the nursing home caregivers disagreed about the significance of upholding resident autonomy to respect residents' dignity. The family members held that not all instances where residents refused care reflect autonomy situations as care refusal often does not reflect the resident's true values and standards but rather, stems from barriers that render necessary care actions difficult. In situations where residents refuse essential care or when the refusal does not align with the residents second-order values, the family members suggested that caregivers strive to understand the causes of refusal and seek non-coercive ways to navigate it. Hence, the family members seemed to endorse the use of soft paternalism in nursing homes to safeguard residents' wellbeing and dignity.

Residents' experiences of paternalism in nursing homes.

BACKGROUND: Interest in strengthening residents' autonomy in nursing homes is intensifying and professional caregivers' experience ethical dilemmas when the principles of beneficence and autonomy conflict. This increased focus requires expanded knowledge of how residents experience decision-making in nursing homes and how being subject to paternalism affects residents' dignity. RESEARCH QUESTION/AIM: This study explored how residents experience paternalism in nursing homes. RESEARCH DESIGN: This study involved a qualitative interpretive design with participant observations and semi-structured interviews. The interpretations were informed by Gadamer's hermeneutics. PARTICIPANTS AND RESEARCH CONTEXT: Eleven residents were interviewed after a period of participant observation in two nursing homes. ETHICAL CONSIDERATIONS: The study was performed in accordance with the Helsinki declaration. The Regional Ethics Committee (REK) permitted the researcher to perform participant observation in the nursing homes. The use of audio recordings of interviews was registered and supervised by Sikt - Norwegian Agency for Shared Services in Education and Research. The resident's consent was assessed continuously. Three interviews were terminated for ethical reasons. FINDINGS: The resident interviews revealed that residents found it obvious for caregivers to possess the decision-making authority in nursing homes. When residents explained their views, three main themes emerged: (1) To be included even though caregivers make the decisions, (2) Surrender to dependency, and (3) Adherence to nursing home norms. CONCLUSIONS: Residents submit to their caregivers and give caregivers the responsibility and function as leaders. Paternalism was experienced as dignifying in situations where it contributed to residents being able to live according to second order desires and values, and when it implied respect and appraisal of residents' capabilities. Paternalism was experienced as debasing when residents felt left out, and when residents felt that their capabilities were underestimated. This also included their capability to withstand paternalistic influence.

The solitary and uncertain learning process: A qualitative study of nursing students' experiences in the initial phase of the COVID-19 pandemic.

When the Coronavirus disease 2019 (COVID-19) pandemic broke out, the nursing students clinical practice period was abruptly interrupted by the lock down. The present study aimed to investigate the nursing students' learning experiences during the initial phase of the pandemic. A qualitative study was conducted investigating nursing students' written assignments (n = 48) of reflections according to their learning process. The qualitative data analysis revealed three main themes, namely the solitary and uncertain learning process; from collective learning process to digital devices; additional learning outcomes. The students' anxiety about the virus affected their motivation to study, but they also expressed enthusiasm and gratitude for having the opportunity to learn about the health system in a time of crisis. These results point towards the health care authorities can rely on nursing students' ability to take part and cover important emergency functions. The use of technology helped the students to achieve their learning objectives.

Perspectives on assistive technology among older Norwegian adults receiving community health services.

INTRODUCTION: The western world is seeking increased implementation of assistive technology (AT) to meet the challenges of an ageing population. The objective of this study is to explore perspectives on AT use among home-dwelling older adults with or without cognitive impairment. METHODS: This study combines findings from a cross-sectional study with a questionnaire package (n = 83) and from qualitative individual interviews (n = 7) and is part of a larger study, the Assisted Living Project. Combining methods promotes complementary inquiries into a phenomenon. RESULTS: The participants already use ATs: TVs, social alarms, mobile phones, stove timers, electronic medical dispensers, PCs and tablet computers. They were both optimistic and skeptical of AT, and expressed different perspectives and expressed different perspectives on ATs in relation to usability, privacy and fear of losing personal face-to-face care. CONCLUSIONS: This study reveals that older adults' perspectives on AT are multifaceted and complex, and can partly be explained by the interacting factors in the HAAT model: person, technology, environment, and context. Further exploration in relation to older adults with health challenges, as well as ethical perspectives on AT implementation, is required for this group. TRIAL REGISTRATION NUMBER: The Norwegian Research Council, Number 47996, funds the Assisted Living Project (ALP).IMPLICATIONS FOR REHABILITATIONThe study was useful in order to inform the health care services about older adults "perspectives on assistive technology".This study reveals the complexity of understanding perspectives towards and the use of assistive technology among older adults with or without cognitive impairment.This study contributes to the understanding of the interactions between the four components: humans, activities, technology and the context.

Involving older adults in technology research and development discussions through dialogue cafés.

BACKGROUND: Citizen involvement is important for ensuring the relevance and quality of many research and innovation efforts. Literature shows that inadequate citizen involvement poses an obstacle during the research, development, and implementation of assistive technology. Previous studies have addressed the advantages and disadvantages of citizen engagement in health research and technology development, and there is concern about how to ensure valuable engagement to avoid situations where they don't have influence. Frail older adults are often excluded from being active partners in research projects. The overall objective of this commentary is to describe a case where dialogue cafés was used as a method for involving assisted living residents in technology discussions, elaborating on the following research question: In what ways are dialogue cafés useful for directing research and development and for engaging residents in assisted living facilities in assistive technology discussions? METHOD: Six dialogue cafés with assisted living residents as participants were carried out over a period of 3 years (2016-19). Reports that were written after each café by the group leaders and rapporteurs provide the material for the analyses in this paper. RESULTS: This study demonstrates an example of facilitating user involvement where the participants felt useful by contributing to research and discussions on assistive technology and where this contribution in fact directed the research and development in the overall Assisted Living Project. CONCLUSION: This study demonstrated that dialogue cafés enable older residents at an assisted living facility to contribute with opinions about their needs and perspectives on assistive technologies. This negates the view of older adults as too frail to participate and demonstrates the importance of including and collaborating with older adults in research.

Assistive technology is used to provide older adults with the opportunity to preserve their quality of life and their ability to cope in everyday life live independently longer and enhance participation in everyday life. This commentary describes dialogue cafés as a method for involving residents in an assisted living facility in discussions about assistive technology. It elaborates on how dialogue cafés are useful for directing research and development and for engaging older adults in assistive technology discussions. Six dialogue cafés were held between 2016 and 2019 with residents (aged between 65 to 92) as participants in an assisted living facility in Norway. Reports that were written after each café by the group leaders and rapporteurs provide the material for the analyses in this paper. The study demonstrated that the engagement process was found to be positive by the participants in the dialogue café groups. It also succeeded in directing the research and technology development in the project. The dialogue cafés seemed to demonstrate a two-way learning process for the researchers and the participants.

Community Health Care Workers' Experiences on Enacting Policy on Technology with Citizens with Mild Cognitive Impairment and Dementia.

PURPOSE: Assistive technologies and digitalization of services are promoted through health policy as key means to manage community care obligations efficiently, and to enable older community care recipients with mild cognitive impairment (MCI) and dementia (D) to remain at home for longer. The overall aim of this paper is to explore how community health care workers enacted current policy on technology with home-dwelling citizens with MCI/D. PARTICIPANTS AND METHODS: Twenty-four community health care workers participated in one of five focus group discussions that explored their experiences and current practices with technologies for citizens with MCI/D. Five researchers took part in the focus groups, while six researchers collaboratively conducted an inductive, thematic analysis according to Braun & Clarke. RESULTS: Two main themes with sub-themes were identified: 1) Current and future potentials of technology; i) frequently used technology, ii) cost-effectiveness and iii) "be there" for social contact and 2) Barriers to implement technologies; i) unsystematic approaches and contested responsibility, ii) knowledge and training and iii) technology in relation to user-friendliness and citizen capacities. CONCLUSION: This study revealed the complexity of implementing policy aims regarding technology provision for citizens with MCI/D. By use of Lipsky's theory on street-level bureaucracy, we shed light on how community health care workers were situated between policies and the everyday lives of citizens with MCI/D, and how their perceived lack of knowledge and practical experiences influenced their exercise of professional discretion in enacting policy on technology in community health care services. Overall, addressing systematic technology approaches was not part of routine care, which may contribute to inequities in provision of technologies to enhance occupational possibilities and meaningful activities in everyday lives of citizens with MCI/D. TRIAL REGISTRATION: NSD project number 47996.

Usability and acceptability of technology for community-dwelling older adults with mild cognitive impairment and dementia: a systematic literature review.

BACKGROUND: The objective of this review was to obtain an overview of the technologies that have been explored with older adults with mild cognitive impairment and dementia (MCI/D), current knowledge on the usability and acceptability of such technologies, and how people with MCI/D and their family carers (FCs) were involved in these studies. MATERIALS AND METHODS: Primary studies published between 2007 and 2017 that explored the use of technologies for community-dwelling people with MCI/D were identified through five databases: MEDLINE, PsycINFO, Embase, AMED, and CINAHL. Twenty-nine out of 359 papers met the criteria for eligibility. We used the Mixed Methods Appraisal Tool for quality assessment. RESULTS: A wide range of technologies was presented in the 29 studies, sorted into four domains: 1) safe walking indoors and outdoors; 2) safe living; 3) independent living; and 4) entertainment and social communication. The current state of knowledge regarding usability and acceptability reveals that even if researchers are aware of these concepts and intend to measure usability and acceptability, they seem difficult to assess. Terms such as "user friendliness" and "acceptance" were used frequently. User participation in the 29 studies was high. Persons with MCI/D, FCs, and staff/other older adults were involved in focus groups, workshops, and interviews as part of the preimplementation process. CONCLUSION: Research regarding technologies to support people with MCI/D seems optimistic, and a wide range of technologies has been evaluated in homes with people with MCI/D and their FCs. A major finding was the importance of including people with MCI/D and their FCs in research, in order to learn about required design features to enhance usability and acceptability. Surprisingly, very few studies reported on the consequences of technology use with regard to quality of life, occupational performance, or human dignity.