Torunn Hamran

Do I need it? Do I really need it? Elderly peoples experiences of unmet assistive technology device needs

An unmet need for assistive technology devices (ATD) occurs when a person would benefit from ATD, as assessed by health-care professionals or by the person In question. Unmet ATD needs In the elderly population have been documented, but little is known about the experience of living with such unmet needs. Purpose: To investigate the unmet need experiences of home-dwelling elderly people In Norway who have applied for ATD. Method: Nine elderly people who lived at home and had applied for ATD were interviewed. The interview transcripts were analysed withIn a hermeneutical phenomenological perspective. Results: The unmet ATD need experiences involved enduring a difficult situation by adjusting their expectations and activities, being introduced to ATD as a possible solution to the difficulties and negotiating this potential solution In light of the perceived situation. Conclusion: Observers assessments of unmet ATD needs are not readily experienced as such by the elderly. Adjusting expectations and activities enabled the participants to maintaIn meaningful activities but also made the difficulties less likely to be articulated as unmet needs. When encountering elderly people, health-care professionals must be sensitive to the unarticulated needs and potential difficulties of the elderly In performing everyday activities. Implications for Rehabilitation Health-care professionals must allow elderly people to define their individual difficulties and state their need for assistive technology. Elderly people are creative problem solvers when managing difficulties In their everyday life. Providing information on assistive technology devices and how to obtaIn them is not sufficient to prevent elderly people from living with unmet assistive technology needs.

Long-term recovery trajectory after stroke: an ongoing negotiation between body, participation and self

Abstract Purpose: Research has mainly focused on the first year of recovery trajectory after stroke, but there is limited knowledge about how stroke survivors manage their long-term everyday lives. This study seeks to fill this gap by exploring the long-term (1–13 years) negotiations of stroke survivors when they experience progress, wellbeing and faith in the future. Method: Repeated in-depth interviews were conducted with nine people living with moderate impairment after stroke and their closest relatives. Concepts from phenomenology and critical psychology constituted the frame of reference of the study. Results: The long-term stroke recovery trajectory can be understood as a process of struggling to overcome tensions between three phenomena under ongoing change: the lived body, participation in everyday life and sense of self. During the recovery process, stroke survivors experience progress, well-being and faith in the future when moving towards renewed relationships, characterised by (1) a modified habitual body, (2) repositioned participation in specific everyday life contexts and (3) a transformed sense of self. Conclusions: This study stresses the importance of developing new forms of professional support during the long-term recovery trajectory, to stimulate and increase interaction and coherence in the relationship between the stroke survivors bodily perception, participation in everyday life and sense of self. Implications for Rehabilitation The study deepening how the long-term recovery trajectory after stroke is about ongoing embodied, practical and socially situated negotiations. The study demonstrates that the recovery trajectory is a long term process of learning where the stroke survivor, as an embodied agent, gradually modifies new bodily habits, re-position participation and transforming of the self. Health personnel are usually available in the acute and early rehabilitation period. The three phenomenons under ongoing change; “body”, “participation” and “self” are at this point just about being moved toward a renewed and a more coherent relationship in the stroke survivor long-lasting everyday life situated recovery trajectory. Available rehabilitation services at the municipal level supporting stroke survivors and relatives practical, social and interpersonal long-term challenges in everyday life can be important for minimizing their struggles and for promoting the experience progress, wellbeing and faith in the future.

Home care patients in four Nordic capitals – predictors of nursing home admission during one-year followup

The aim was to predict nursing home admission (NHA) for home care patients after a 12-month follow-up study. This Nordic study is derived from the aged in home care (AdHOC) project conducted in 2001–2003 with patients at 11 sites in Europe. The participants in the cohort study were randomly selected individuals, aged 65 years or older, receiving homecare in Oslo, Stockholm, Copenhagen, and Reykjavik. The Resident Assessment Instrument for Home Care (version 2.0) was used. Epidemiological and medical characteristics of patients and service utilization were recorded for 1508 home care patients (participation rate 74%). In this sample 75% were female. The mean age was 82.1 (6.9) years for men and 84.0 (6.6) for women. The most consistent predictor of NHA was receiving skilled nursing procedures at baseline (help with medication and injections, administration or help with oxygen, intravenous, catheter and stoma care, wounds and skin care) (adjusted odds ratio = 3.7, 95% confidence interval: 1.7–7.8; P < 0.001). In this Nordic material, stronger emphasizing on higher qualified nurses in a home care setting could prevent or delay NHA.

Exploring the meaning of a new assistive technology device for older individuals

Abstract Researching the outcomes of assistive technology devices (ATDs) for older clients is important to facilitate clinical decision-making. However, to understand the outcomes associated with ATDs, one must investigate the users’ experiences and acknowledge the user as an active participant in diverse social contexts. Purpose: To enhance understanding of the users’ perspective regarding ATDs, this study aimed to investigate the meaning of the ATD for older individuals still living in their home environment. Methods: To provide descriptions of ATD experiences, older individuals who received a new ATD to compensate for their challenges in moving around, assist in self-care or both were recruited for the study. Participants were interviewed twice, with a few months between interviews, about their experience in using their new ATD. The interview transcripts were analyzed in a hermeneutical–phenomenological research approach. Results: The analysis revealed three recurring themes associated with the description of ATD experiences: “enabling performance and choice”, “transformation from requiring assistance to assisting others”, and “preparing for the future”. Conclusion: The results show that ATDs are used to enhance competence, mastery, control, self-worth, hope, and preparedness. The ATD service delivery should be client-centered and the client should be acknowledged as an active participant in producing change. Implications for Rehabilitation Researching outcomes of assistive technology devices are complicated and should involve the user experience. Assistive technology devices does not have to be used in concrete actions to involve meaning for the user. Health care professionals should be sensitive towards the meaning dimensions of the assistive technology devices as experienced by the user throughout the service delivery process.

“The Old Sami” – who is he and how should he be cared for? A discourse analysis of Norwegian policy documents regarding care services for elderly Sami

Abstract This study examined four policy documents published by the Norwegian government from 1995 to 2009 describing issues regarding the provision of public services to elderly Sami in Norway. Adopting a Foucauldian discourse analytic approach, we explored how the statements regarding elderly Sami and care services in these documents are situated within contemporary ethno-political and healthcare discourses. The documents exhibited two major and interrelated trends: the predominant portrayal of the Sami and the ethos of cultural congruent care. The analysis demonstrated a high degree of discursive continuity throughout the four documents, with the image of the elderly Sami constructed in the earliest document reproduced to a large extent in the newer documents. We suggest that a critical cultural perspective offers an alternative to the understanding of culture and the concept of cultural congruent care found in the documents. From a critical cultural perspective, culture is seen as relational, changing over time, and dependent on social context, history, gender, and other factors. In this view, cultural competence does not involve learning a fixed, coherent body of knowledge comprising “the Sami culture”. A critical cultural perspective challenges those who provide care to the elderly Sami to become aware of social, political, and historical processes while simultaneously acknowledging that the impacts of these processes on the lives of the individuals they encounter can never be fully known. Furthermore, this perspective prompts healthcare providers to reflect on how their assumptions about the people they encounter are shaped by their own social, cultural, economic, and professional backgrounds. We suggest that the authorities initiate a new policy document based on current insights into the everyday experiences of the current cohort of elderly Sami as well as contemporary social, ethno-political, and healthcare discourses.

“They take care of their own”: healthcare professionals’ constructions of Sami persons with dementia and their families’ reluctance to seek and accept help through attributions to multiple contexts

ABSTRACT Background: Norwegian government white papers have stated that the Sami population is reluctant to seek help from healthcare services and has traditions of self-help and the use of local networks. Objective: In this article we explore healthcare professionals’ discursive constructions of Sami persons with dementia and their families’ reluctance to seek and accept help from healthcare services. Design: The article is based on an analysis of focus group interviews with healthcare professionals (n = 18) in four municipalities in Northern Norway with multiethnic populations. A narrative context analysis, which involved an examination of sequences of discourse, was employed. Results: Reluctance to seek and accept help among Sami service users and assumptions about self-support were recurring themes in the focus groups. The reluctance was attributed to macro contexts, such as socio-historical processes and cultural norms, and to micro contexts, such as individual and interpersonal factors including the healthcare professionals’ cultural backgrounds and language competence. The healthcare professionals’ positioning as insiders or outsiders (Sami or non-Sami) affected their attributions. Conclusions: Local healthcare professionals are at the front line for providing and assessing service users’ needs for healthcare services. Consequently, their perceptions of service users’ needs are pivotal for achieving equity in healthcare. The established opinion that Sami “take care of their own” and are reluctant to seek and accept help may lead to omissions or neglect. Healthcare professionals’ awareness about how present encounters in healthcare settings are framed and shaped by the service users’ previous and prevailing experiences of marginalisation and subordination is crucial to avoid omissions or neglect resulting from assumptions about cultural preferences. Discursively shaped boundaries and differences between groups may create the impression that the distance between the groups is too wide to traverse, which in turn may lead to further marginalisation of service users in healthcare encounters.

Processes of user participation among formal and family caregivers in home-based care for persons with dementia

Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was ‘negotiating participation in decisions’. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients’ legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

‘When the saints go marching in’: constructions of senior volunteering in Norwegian government white papers, and in Norwegian senior volunteers’ and health-care professionals’ stories

ABSTRACT This study explores policy makers’, health-care professionals’ and senior volunteers’ perceptions of senior volunteers. Two Norwegian government white papers regarding older adult care and welfare services, which were published over a period of 19 years, were selected for close examination. Furthermore, focus group interviews with a purposeful sample of five senior volunteers and 15 health-care professionals were conducted. The study explores the discursive formations of senior volunteers in the government white papers and how they are negotiated in the senior volunteers’ and the health-care professionals’ narratives. Two dominant discourses were presented in the white papers: a prevention discourse (in which volunteering was presented primarily as a means to prevent volunteers’ loneliness and need for care services) and a sustainability discourse (in which the volunteers were presented as instrumental in future sustainable care services). Both discourses echo a common overarching discourse about a capacity crisis due to the ageing population. The senior volunteers were positioned as partners and active agents in both their own narratives and the health-care professionals’ narratives. Their position as independent and as spokespersons for the less empowered were evident only in the senior volunteers’ own narratives. Only the health-care professionals referenced the prevention discourse and capacity issues. The senior volunteers presented themselves as competent, efficient political actors, and they resisted both the prevention and sustainability discourses. In the senior volunteers’ narratives, social and political participation were interrelated. The study demonstrates that new discursive landscapes must be created to capture the diversity among senior volunteers and their efforts. While senior volunteers must be meaningfully involved in decision making, planning and design, their positions as independent and active agents must also be ensured. Authentic partnerships between senior volunteers and public care services involve a balance between involvement and independence.

Stroke survivors’ and relatives’ negotiation of relational and activity changes: A qualitative study

Abstract Objective: This study explores stroke survivors’ and relatives’ negotiation of relational and activity change in their interrelated long-term meaning-making processes of everyday life and what it means for the experience of progress and well-being. Material and methods: Repeated retrospective in-depth interviews were conducted with both the stroke survivor and relatives. A Critical Psychological Perspective gives the frame of reference to study more closely what is going on in and across particular contexts in family members’ ongoing social practices. Results: An asymmetric problematic relationship can develop among the participants in the context of family life. However, the analysis identifies six beneficial relational and activity changes, which contribute to a reciprocal, balanced repositioning, and help the family move in a more positive direction. The repositioning processes facilitate a new transformation of family we-ness, which is important for the participants’ experience of process and well-being. The comprehensive family work that has to be done is about managing the imbalance of everyday life, upholding separate activities outside the family sphere and dealing with the fact that peripheral others become more peripheral. Conclusion: The study addresses some arguments for taking a family-centred perspective in occupational therapy practice, as well as in a stroke rehabilitation service in general.

Collaboration between Sami and non-Sami formal and family caregivers in rural municipalities

ABSTRACT The aim of this study was to explore how caregivers experience collaboration in rural municipalities in northern Norway. We conducted fieldwork with a dementia team in addition to seventeen qualitative in-depth interviews with formal and family caregivers. The caregivers had ethnic Sami and ethnic Norwegian affiliation. The theme ‘negotiating ethnic and ethno-political positions’ was identified through thematic analysis and developed using positioning theory. Ethnicity involves dynamic and situated personal affiliations, and participants negotiate each others ethnic positions in practice. Negotiations of ethnic positions hamper collaboration between formal and family caregivers, and ethno-political positions reinforce stereotyped ethnic positions. This study contributes to the understanding of and the debate over positions on ethno-cultural collaboration in health care. In practice, participants negotiate the health policy concept of ‘cultural facilitation’, which must be broadened to ensure equal healthcare services.