Family caregivers' involvement in decision-making processes regarding admission of persons with dementia to nursing homes.

The current Western health policy of ageing in place relies on a triad collaboration among patients, healthcare service providers and family caregivers. Such collaborations presuppose involvement in a vague juridical landscape. This article explores family caregivers' experiences with involvement in and influence on nursing home decision-making processes for persons with dementia. The data consist of 12 in-depth interviews with family caregivers. Using positioning theory, we demonstrate how family caregivers strive to balance their assumed duty to care for the person with their needs to care for themselves. Their involvement (or non-involvement) in the complex decision-making process is demonstrated through the following seven positions: (1) self-condemning determiner, (2) dominant, (3) proponent, (4) saluting, (5) pending, (6) prisoner, and (7) stooge. Furthermore, we discuss why expedient positions are more available for some individuals and the consequences of family caregivers' various positions on the healthcare policy aims of collaboration and equal healthcare services.

Continuity of home-based care for persons with dementia from formal and family caregivers' perspective.

Western health care policy emphasizes continuity of care for people with dementia. This paper presents formal and family caregivers' descriptions of collaboration in home-based dementia care and explores whether this collaboration inhibits or enables continuity of care and the use of the statutory individual plan. Empirical data were derived from 18 in-depth interviews with formal and family caregivers and brief fieldwork. The results reveal dynamic positions in collaborative practice and, from these positions, discrepancies in descriptions of practices and the needs of the person with dementia. Such micro-level discrepancies may serve as barriers for macro-level continuity of care objectives. To ensure continuity of care, formal and family caregivers must be aware of their positions and discuss specific expectations for information flow, involvement and care responsibilities. Individual plan can serve as a starting point for such discussions.

"We own the illness": a qualitative study of networks in two communities with mixed ethnicity in Northern Norway.

BACKGROUND: When people in Northern Norway get ill, they often use traditional medicine. The global aim of this study was to examine the extended family networks' function and responsibility in cases of illness in the family, in two Northern Norwegian communities with a population of mixed ethnicity. METHODS: Semi-structured individual interviews with 13 participants and 4 focus group interviews with total 11 participants were conducted. The text data was transcribed verbatim and analysed based on the criteria for content analysis. RESULTS: The participants grew up in areas where it was common to seek help from traditional healers. They were organized in networks and shared responsibility for the patient and they provided practical help and support for the family. According to the networks, health-care personnel should make room for the entire network to visit the patient in severe and life-threatening situations. CONCLUSION: Traditional networks are an extra resource for people in these communities. The networks seem to be essential in handling and disseminating hope and manageability on an individual as well as a collective level. Health personnel working in communities with mixed ethnicity should have thorough knowledge of the mixed culture, including the importance of traditional network to the patients.

"There are more things in heaven and earth!" How knowledge about traditional healing affects clinical practice: interviews with conventional health personnel.

People with Sami and Norwegian background are frequent users of traditional folk medicine (TM). Traditional healing, such as religious prayers of healing (reading) and the laying on of hands, are examples of commonly used modalities. The global aim of this study is to examine whether health personnel's knowledge, attitudes and experiences of traditional healing affect their clinical practice. Semi-structured individual interviews (n=32) and focus group interviews (n=2) were conducted among health personnel in two communities in Northern Norway. The text data was transcribed verbatim and analysed based on the criteria for content analysis. Six themes were identified. The participants had acquired their knowledge of traditional healing through their childhood, adolescence and experience as health personnel in the communities. They all expressed that they were positive to the patients' use of traditional healing. They justified their attitudes, stating that "there are more things in heaven and earth" and they had faith in the placebo effects of traditional healing. The health personnel respected their patients' faith and many facilitated the use of traditional healing. In some cases, they also applied traditional healing tools if the patients asked them to do so. The health personnel were positive and open-minded towards traditional healing. They considered reading as a tool that could help the patients to handle illness in a good way. Health personnel were willing to perform traditional healing and include traditional tools in their professional toolkit, even though these tools were not documented as evidence-based treatment. In this way they could offer their patients integrated health services which were tailored to the patients' treatment philosophy.

"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.

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.

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

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.

Roads not taken: A narrative positioning analysis of older adults' stories about missed opportunities.

The point of departure for this article is narrative gerontology's conceptualization of life as storied and the assumption that identity development and meaning making do not cease at any age, but rather continue throughout life. We suggest that if identity construction is considered to be a lifelong project, narrative gerontology would benefit from applying analytical perspectives focused on the situated activity of narration. In this article, we apply a three-level positioning analysis to segments of interviews with two elderly Sami women concerning missed opportunities or roads not taken and, more specifically, to narrations about missed opportunities for education. We argue that such narrations should not necessarily be considered expressions of regret or processes of reconciliation but rather as pivotal in here-and-now identity constructions. Narrations about missed opportunities demonstrate that what narrators choose to insert into their life stories is chosen for a purpose and for an audience in a specific interpersonal and discursive context. We suggest that narrative gerontology would benefit from a broader focus on the diversity of sites of engagement in which older adults perform identity constructions. This shift implies moving beyond traditional studies of older adults' life stories and biographical narratives as related in the context of qualitative research interviews (of which the present study of Sami older adults' life stories is indeed an example).

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

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 survivor's 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.

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

UNLABELLED: 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.

Older individuals' experiences during the assistive technology device service delivery process.

OBJECTIVE: Providing assistive technology devices to older individuals living in their ordinary homes is an important intervention to increase and sustain independence and to enable ageing at home. However, little is known about older individuals' experiences and needs in the assistive technology device (ATD) service delivery process. The purpose of this study was to investigate older individuals' experiences during the service delivery process of ATDs. METHODS: Nine older individuals were interviewed three times each throughout the ATD service delivery process. The interviews were analysed within a hermeneutical phenomenological perspective. RESULTS: The results show that the service delivery process could be interpreted as an enigmatic journey and described using four themes: "hope and optimistic expectations", "managing after delivery or needing additional help", "having available help versus being abandoned", and "taking charge or putting up". CONCLUSIONS: The results emphasize the need for occupational therapists to maintain an individualized approach towards older clients throughout the service delivery process. The experiences of older individuals were diverse and related to expectations that were not necessarily articulated to the occupational therapist. The situation when the ATD is delivered to the client was highlighted by the clients as an important event with the potential to facilitate a successful service delivery process.

Struggles of being and becoming: a dialogical narrative analysis of the life stories of Sami elderly.

The Sami are an indigenous people living in Norway, Sweden, Finland, and Russia. Historically, national states have made strong efforts to assimilate the Sami people into the majority populations, and the Sami have experienced stigmatization and discrimination. However, after World War II, there has been a revitalization process among the Sami that was pioneered by the Sami Movement and gradually adopted in broader spheres of Norwegian society. The lifespans of the current cohort of elderly Sami unfold throughout a historical period in which contrasting public narratives about the Sami have dominated. The purpose of this study was to explore the relationship between elderly Sami's individual life stories and contrasting public narratives about the Sami. Nineteen elderly Sami individuals in Norway were interviewed. This article is a dialogical narrative analysis of the life stories of four elderly Sami. The article illuminates how individual life stories are framed and shaped by public narratives and how identifying is an ongoing process also in late life. A dialogical relationship between individual life stories and public narratives implies that individual stories have the capacity to shape and revise dominant public narratives. To do so, the number of stories that are allowed to act must be increased. A commitment in dialogic narrative research on minority elderly is to make available individual stories from the margins of the public narratives to reduce narrative silences and to prevent the reproduction of established "truths".

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

UNLABELLED: 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.

Indigenous life stories as narratives of health and resistance: a dialogical narrative analysis.

The Sami people have historically been exposed to severe assimilation processes. The objective of this study was to explore elderly Samis' experiences of health. A total of 19 elderly Sami individuals in Norway were interviewed.This article is a dialogical narrative analysis of the life stories of 3 Sami women. The life stories are perceived as narratives of health and resistance. Postcolonial theory provides a framework for understanding the impact of historical and socioeconomic factors in people's lives and health. Narratives of resistance demonstrate that people are not passive victims of the legacy of colonialism. Resistance is not a passive state but an active process, as is health. Resistance is a resource that should be appreciated by health services, both at a systemic level--for example, through partnership with Indigenous elderly in the planning and shaping of services--and in individual encounters between patients and healthcare providers.

Staying active despite pain: pain beliefs and experiences with activity-related pain in patients with chronic musculoskeletal pain.

OBJECTIVE: Maintain a level of activity and exercise is advice often given to patients with chronic musculoskeletal pain, but many patients find physical activity painful and consequently hesitate to move. Disability seems to be associated with fear of pain and there is a need to enhance our understanding of patients' beliefs and attitudes about how fear of pain affects physical activity and why some people are active despite their pain. The aim of this research was to understand thoughts and experiences about pain related to activity in patients with musculoskeletal disorders; the situations that promoted pain and if and how fear was expressed. METHODS: Five women and five men, recruited from a larger survey on fear, pain and physical activity were interviewed. The interviews were analysed by qualitative methods for themes about participants' pain and beliefs about pain. RESULTS: By interpreting signals from the body, patients calculated and planned their daily life to stay active despite pain and participate in their social lives. Pain was a signal with diverse meanings which, with the influence of time, seemed to change from a sign of danger to a reminder to moderate their level of activity. By experimenting with different activities, patients learned how to gradually remain or become physically active. CONCLUSION: Patients strived to stay active despite pain. The interpretation of pain changed over time, from a threatening signal to a signal with diverse meanings. PRACTICE IMPLICATIONS: The findings provide insights that may improve the educational rehabilitation of patients with musculoskeletal pain.

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.