Nothing to complain about? Residents’ and relatives’ views on a “good life” and ethical challenges in nursing homes

Background: Nursing home residents are a vulnerable population. Most of them suffer from multi-morbidity, while many have cognitive impairment or dementia and need care around the clock. Several ethical challenges in nursing homes have been described in the scientific literature. Most studies have used staff members as informants, some have focused on the relatives’ view, but substantial knowledge about the residents’ perspective is lacking. Objective: To study what nursing home residents and their relatives perceive as ethical challenges in Norwegian nursing homes. Research design: A qualitative design with in-depth interviews with nursing home residents, and focus-group interviews with relatives of nursing home residents. The digitally recorded interviews were transcribed verbatim. Analysis was based on Interpretive Description. Participants and research context: A total of 25 nursing home residents from nine nursing homes in Norway, and 18 relatives of nursing home residents from three of these nursing homes. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway. Findings and discussion: The main ethical challenges in Norwegian nursing homes from the residents’ and relatives’ perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care. Conclusion: Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to “everyday ethical issues.

Nothing to complain about? : residents’ and relatives’ viewson a "good life" and ethical challenges in nursing homes

Background: Nursing home residents are a vulnerable population. Most of them suffer from multimorbidity, while many have cognitive impairment or dementia and need care around the clock. Several ethical challenges in nursing homes have been described in the scientific literature. Most studies have used staff members as informants, some have focused on the relatives’ view, but substantial knowledge about the residents’ perspective is lacking. Objective: To study what nursing home residents and their relatives perceive as ethical challenges in Norwegian nursing homes. Research design: A qualitative design with in-depth interviews with nursing home residents, and focusgroup interviews with relatives of nursing home residents. The digitally recorded interviews were transcribed verbatim. Analysis was based on Interpretive Description. Participants and research context: A total of 25 nursing home residents from nine nursing homes in Norway, and 18 relatives of nursing home residents from three of these nursing homes. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway. Findings and discussion: The main ethical challenges in Norwegian nursing homes from the residents’ and relatives’ perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care. Conclusion: Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to "everyday ethical issues.

Nothing to complain about? Residents’ and relatives’ views on a “good life” and ethical challenges in nursing homes

Background: Nursing home residents are a vulnerable population. Most of them suffer from multi-morbidity, while many have cognitive impairment or dementia and need care around the clock. Several ethical challenges in nursing homes have been described in the scientific literature. Most studies have used staff members as informants, some have focused on the relatives’ view, but substantial knowledge about the residents’ perspective is lacking. Objective: To study what nursing home residents and their relatives perceive as ethical challenges in Norwegian nursing homes. Research design: A qualitative design with in-depth interviews with nursing home residents, and focus-group interviews with relatives of nursing home residents. The digitally recorded interviews were transcribed verbatim. Analysis was based on Interpretive Description. Participants and research context: A total of 25 nursing home residents from nine nursing homes in Norway, and 18 relatives of nursing home residents from three of these nursing homes. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Oslo, Norway. Findings and discussion: The main ethical challenges in Norwegian nursing homes from the residents’ and relatives’ perspective were as follows: (a) acceptance and adaptation, (b) well-being and a good life, (c) autonomy and self-determination, and (d) lack of resources. The relationship with the staff was of outmost importance and was experienced as both rewarding and problematic. None of the residents in our study mentioned ethical challenges connected to end-of-life care. Conclusion: Residents and relatives experience ethical challenges in Norwegian nursing homes, mostly connected to “everyday ethical issues.

Understanding the course of critical illness through a lifeworld approach

An increasing number of individuals receive and survive intensive care treatment; however, several individuals experience problems afterward, which may threaten recovery. Grounded in a lifeworld approach, the aim of this study was to explore and describe what intensive care patients experience as limiting and strengthening throughout their illness trajectories. Ten former intensive care patients were interviewed three to eight months after hospital discharge. Using Giorgi’s phenomenological analysis, a general structure of gaining strength through a caring interaction with others was revealed. The structure consisted of three constituents: feeling safe through a caring presence, being seen and met as a unique person, and being supported to restore capacity. Being met with a humanistic approach and individualized care appeared to be important, and the findings are discussed within the framework of lifeworld-led care. To facilitate improved aftercare of the critically ill, more tailored support throughout the illness trajectory is needed.publishedVersio

Being hospitalized with a newly diagnosed chronic illness - A phenomenological study of children’s lifeworld in the hospital

Published version of an article in the journal: International Journal of Qualitative Studies on Health and Well-being. Also available from Co-Action Publishing: http://dx.doi.org/10.3402/qhw.v7i0.18694 Open AccessThe impact of a hospital environment on children has rarely been investigated. Recently, however, the perspective of hospitalized children has been taken into account. Being hospitalized and facing an illness represent a dramatic change in a child’s daily life, and the quality of the environment may influence the child’s experiences. The aim of this study was to investigate the experiences of children being hospitalized with newly diagnosed type 1 diabetes and to obtain an increased understanding of the environmental influences on the children’s lifeworld. The study used a hermeneutic phenomenological approach. The design is a combination of observation of the participant, interviews, and photographs. Nine children, aged between 7 and 12 years, participated in the study. The data were collected between October 2008 and February 2010 and analysed in accordance with thematic analysis as described by van Manen. The children experienced change through recognition and adaptation. They perceived the environment as strange but still comfortable because of the ‘‘child-friendly’’ atmosphere, close contact with their relatives, and access to private space. The children were gradually able to adapt to their new life; they perceived their illness through bodily changes and developed practical skills and understanding. The findings underscored the necessity for an emphasis on the mutual relationship between the body and its environment. Bodily changes that occur during illness may lead to changes in one’s perception of the environment. Children seem to be particularly affected when the body appears alien and the hospital environment is unfamiliar. A well-adapted environment, active involvement, and the incorporation of new habits are significant elements of gradually returning to a more familiar life. However, the child’s new life requires alertness to the body’s signals and acclimation to a demanding diabetes treatment regime. All these factors remind children of their body’s needs and experiences and influence their lifeworld

Telemedicine in diabetes foot care delivery: health care professionals’ experience

Background: Introducing new technology in health care is inevitably a challenge. More knowledge is needed to better plan future telemedicine interventions. Our aim was therefore to explore health care professionals’ experience in the initial phase of introducing telemedicine technology in caring for people with diabetic foot ulcers. Methods: Our methodological strategy was Interpretive Description. Data were collected between 2014 and 2015 using focus groups (n = 10). Participants from home-based care, primary care and outpatient hospital clinics were recruited from the intervention arm of an ongoing cluster randomized controlled trial (RCT) (Clinicaltrials.gov: NCT01710774). Most were nurses (n = 29), but the sample also included one nurse assistant, podiatrists (n = 2) and physicians (n = 2). Results: The participants reported experiencing meaningful changes to their practice arising from telemedicine, especially associated with increased wound assessment knowledge and skills and improved documentation quality. They also experienced more streamlined communication between primary health care and specialist health care. Despite obstacles associated with finding the documentation process time consuming, the participants’ attitudes to telemedicine were overwhelmingly positive and their general enthusiasm for the innovation was high. Conclusions: Our findings indicate that using a telemedicine intervention enabled the participating health care professionals to approach their patients with diabetic foot ulcer with more knowledge, better wound assessment skills and heightened confidence. Furthermore, it streamlined the communication between health care levels and helped seeing the patients in a more holistic way. Keywords: telemedicine, diabetic foot ulcer, focus groups, interpretive description, health care professional

Det som sitter i veggene

SammendragRommet ser ut til spille en viktig rolle når man informerer om helse. Et forskningsprosjekt i samarbeid mellom Høgskolene Sør-Trøndelag, Molde og Volda har invitert en gruppe pårørende til mennesker med demens til teaterforestillinger som berører demens-sykdom og pårørendes situasjon. Informantene gir uttrykk for at opplevelsene av disse forestillingene oppleves sterkere og annerledes enn informasjon i et nøytralt rom på sykehuset, og gir en sterkere opplevelse av gjenkjennelse, berøring  og bygningene kan ha på for formidling, og hva opplevelsen av mening, gjennom kunsten, han ha å si for pårørende i en krevende situasjon. Hva slags kunnskap og mening er materialisert i et sykehus, og hva ligger i en teaterbygning

Theater as `bildung` in the health professions

Healthcare workers who watch a theatre play about dementia, gain experiential knowledge about living with dementia. In this essay we discuss the nature of this knowledge in light of the concept of bildung. This discussion hinges on the Gadamers explication of the close ties between understanding (verstehen) and bildung. Theatre as an art form can yield insights into narratives of otherness and may trigger reflection of one’s own experiences and thus, provide opportunities for bildung.publishedVersio

Det som sitter i veggene

Rommet ser ut til spille en viktig rolle når man informerer om helse. Et forskningsprosjekt i samarbeid mellom Høgskolene Sør-Trøndelag, Molde og Volda har invitert en gruppe pårørende til mennesker med demens til teaterforestillinger som berører demens-sykdom og pårørendes situasjon. Informantene gir uttrykk for at opplevelsene av disse forestillingene oppleves sterkere og annerledes enn informasjon i et nøytralt rom på sykehuset, og gir en sterkere opplevelse av gjenkjennelse, berøring og bygningene kan ha på for formidling, og hva opplevelsen av mening, gjennom kunsten, han ha å si for pårørende i en krevende situasjon. Hva slags kunnskap og mening er materialisert i et sykehus, og hva ligger i en teaterbygning?publishedVersio