Lipedema is a chronic, progressive disease that almost exclusively affects women and often misdiagnosed as obesity or primary lymphedema. Research concerning lipedema is sparse, and there is a lack of studies focusing on women's experiences of living with the illness. We interviewed fourteen women with lipedema with the aim of describing their experiences of living with lipedema. Our results show that women felt controlled by their body, and were fat-shamed and viewed by others as a person who lacked character. They received unsupportive advice on how to manage from healthcare, and blamed themselves while striving to take responsibility.

I denna studie analyserar och diskuterar vi intervjuer som genomförts med kvinnor som lever i eller har tidigare erfarenhet av hemlöshet. Det handlar om semistrukturerade intervjuer med en kvalitativ ansats som genomfördes under hösten 2019 av två forskare inom ramen för ett större vårdvetenskapligt projekt med syftet att kartlägga hemlösa kvinnors vårdsituation och hälsolitteracitet. Projektet antas i förlängningen kunna bidra till en minskning av stigmatiseringen och diskrimineringen av denna grupp i samhället i stort och särskilt inom vården. För att kunna uppnå syftet har forskarna valt att utforma intervjuerna på ett sådant sätt att de ska bli rika på berättelser om undersökningsdeltagarnas egna erfarenheter av att söka vård samt om hur de använder (eller inte har möjlighet att använda) mobiltelefoner, datorer etc. i vårdrelaterade sammanhang. Man har också velat få reda på hur undersökningsdeltagarna skulle önska att vården skulle se ut om de själva fick bestämma. 

Vi som har skrivit föreliggande artikel ingår inte i detta projekt. Däremot har vi av ursprungsforskarna själva, strax efter att intervjuerna var klara, blivit ombedda att kritiskt granska och utvärdera dem, på det sätt som vi själva finner bäst. Vi har härvidlag strävat efter att arbeta materialnära och ganska förutsättningslöst, men centralt för vår granskning har varit dels ursprungsforskarnas val att genomföra tämligen formella intervjuer, dels intervjutekniken. Vad sägs? Hur sägs det? När sägs det? Vad sägs inte? Hur fungerar samspelet mellan samtalets bägge parter? Vad hade med fördel kunnat göras annorlunda, om man hade velat få till ett bättre samspel samt kanske ett rikare och samtalsämnesmässigt relevantare material att beforska? 

För att på detaljnivå kunna avgöra vad som sker i interaktionen mellan intervjuaren och den intervjuade (undersökningsdeltagaren) använder vi oss av den etnometodologiskt influerade samtalsanalysen: conversation analysis (CA). Vårt primära mål är att avtäcka återkommande interaktionsmönster som är relevanta vid en utvärdering av insamlingsmetoden och intervjutekniken, och som bör kunna vara intressanta att ta del av för andra forskare som avser att i forskningssyfte själva intervjua i något avseende utsatta, marginaliserade eller diskriminerade grupper av människor. Vår studie bidrar även till den samlade samtalsanalytiska kunskapen om hur interaktion i (forsknings)intervjuer kan gå till. 

För att kunna genomföra en utvärderande bedömning av intervjuarnas agerande lutar vi oss även mot den vårdvetenskapliga livsvärldsteorin. Denna teori går enligt vår mening utmärkt att kombinera med CA. Båda teorierna har viktiga rötter i fenomenologin och bygger på vissa socialkonstruktivistiska grundantaganden. Teorierna har en likartad syn på fenomen såsom vardagskunskap och interaktion, samt på forskning om människors beteende och erfarenheter som en närmast med nödvändighet (inter)subjektiv och tolkande verksamhet. 

Vi vill emellertid även framhålla vår undersökning i egenskap av en interaktionell studie av ett specifikt empiriskt material, där en enskild intervju står i förgrunden. Att presentera (en analys av) detta material för forskarsamhället uppfattar vi som viktigt i sig, bl.a. ur ett socialt hållbarhetsperspektiv, oberoende av vilka forskningsmetodiska slutsatser man väljer att dra. Hemlösa personer, och inte minst kvinnor, lever ofta på samhällets skuggsida – relativt maktlösa, förbisedda av politiker, medier etc. och med begränsade möjligheter att få komma till tals i offentligheten. Marginalisering av dessa människor sker även inom vetenskapliga verksamheter: hemlösa personer agerar ytterst sällan som vare sig forskare eller undersökningsdeltagare. Att delta i ett forskningsprojekt – och där få beskriva sina levnadsvillkor, tankar och åsikter med egna ord – kan vara ett sätt att vara delaktig i samhällsutvecklingen.

Persons with dementia face several challenges in daily life and the consequences of the disease can be a threat to live a dignified life. Martha Nussbaum has developed the concept of dignified life for people with dementia and suggests the capability approach focusing on what people are able to do and to be in certain agreed-upon areas. Particularly, affiliation and practical reasoning are crucial to preserve a dignified life. For people with dementia the consequences of the disease may affect their opportunities to achieve these vital human capabilities. Digital resources have been shown to have potential to support people in their everyday life and provide them with the means necessary to participate in all aspects of life. In this study, our purpose is to describe digital resources aimed at supporting opportunities for affiliation and practical reasoning among people with dementia. Specifically, we wanted to give an overview of the existing digital resources used to support affiliation and practical reasoning and how such resources affect opportunities for people with dementia. A framework for scoping reviews was used and literature searches were conducted in PubMed and Scopus. The results, by providing a deep analysis of digital resources for affiliation and practical reasoning, highlight the need for a clearer direction towards the very core of vital aspects in a dignified life. Hence, there is a need for a framework that can guide attention towards crucial aspects for supporting a dignified life when developing and evaluating digital resources.

In order to describe how women with osteoporosis strive to maintain daily life we interviewed 11 women using a reflective lifeworld approach based on phenomenological analysis. Osteoporosis is a major public health concern in the Western world, and is predominant among women. Our findings indicated that meanings of striving to maintain daily life imply a belief in oneself and one’s own capabilities. The women expressly speak out for themselves as a way of finding reconciliation without giving in to the illness. Women with osteoporosis expect to gain support early in the course of their illness. They require advice on how to manage the disease as well as support for striving to maintain daily living. Therefore, it is crucial that the women not only are given information about the disease. Equally important is to establish continuity in healthcare encounters, and that health care offers support founded in the women’s lived experiences with focus on their capacities.

The ability of nursing staff to assess and evaluate behavioral and psychological symptoms of dementia (BPSD) to determine when intervention is needed is essential. In order to assist with the assessment process, the current use of the Neuropsychiatric Inventory Nursing Home version (NPI-NH) is internationally accepted. Even though the NPI-NH is thoroughly validated and has several advantages, there are also various challenges when implementing this system in practice. Thus, the aim of this study was to explore clinical reasoning employed by assistant nurses when utilizing the NPI-NH as a tool to assess frequency and severity of BPSD in individuals with advanced dementia.

Twenty structured assessment sessions in which assistant nurses used the NPI-NH were audio recorded and analyzed with a discourse analysis focusing on the activities in the communication.

Four categories were identified to convey assistant nurses' clinical reasoning when assessing and evaluating BPSD using the NPI-NH: considering deteriorations in ability and awareness, incorporating individual and contextual factors, overcoming variations in behaviors and ambiguous formulations in the instrument, and sense-making interactions with colleagues.

The NPI-NH served as a supportive frame and structure for the clinical reasoning performed during the assessment. The clinical reasoning employed by assistant nurses became a way to reach a consensual and broader understanding of the individual with dementia, with the support of NPI-NH as an important framework.

Aims and objectives

To explore how Martha Nussbaum's approach to human capabilities can apply to dignity in the lives of people with advanced dementia living in nursing homes.

Background

Challenges experienced when supporting people with advanced dementia who express problematic behaviours include understanding their needs and ensuring a dignified life for them.

Design and methods

Data were gathered using an ethnographic approach based on participatory observation. Nussbaum's capability approach was then used as a framework for the analysis. Four women diagnosed with advanced dementia who also expressed problematic behaviours were recruited from a nursing home in Northern Sweden. The data collection was performed during 2015.

Findings

Individuals with advanced dementia had difficulties in participating in the planning of their lives and achieving the human capability of practical reasoning. They were also at risk of being placed outside the social group, thus hindering them from attaining the human capability of affiliation. A dignified life for individuals with advanced dementia requires nursing staff to be present and to provide adapted support to ensure that the individual can actually pursue human capabilities.

Conclusion

Creating opportunities for the human capabilities of practical reasoning and affiliation is essential as they permeate all other human capabilities. For these individuals, it was crucial not only to create opportunities for human capabilities but also to attend to their expressions and needs and to guide and steer them towards a dignified life.

Implications for Practice

The normative structure of the capability approach described by Nussbaum can ensure that nursing staffs move beyond fulfilling patients’ basic needs to consider other capabilities vital for a dignified life.

Objective: Patient participation is said to be an important factor for patients to experience satisfaction and quality with hospital care. Still, little is known about what participation actually means for patients in the specific context of hospital settings. Therefore, the aim of this study was to elucidate meanings of participation as narrated by patients.

Method: Narrative interviews were conducted during the Autumn of 2013 until the Spring of 2014 and then phenomenological hermeneutically interpreted. In this study, we suggest that the phenomenon of participation in hospital care is experienced by the patient when being a co-creator and seen as an important person in a trustful context.

Results: The results illustrate that an experience of an open, cooperative and coherent environment invites and contributes to participate despite being in a vulnerable situation. The study highlights the importance of responding to each patient as a person, who sometimes has a need to participate actively and sometimes wants to hand over and assume the role of patient in the hospital care setting.

Discussion: Meanings of participation among patients in hospital care can be understood as a phenomenon experienced when being an involved co-creator and seen as an important person in a trustful context. In this study, as well as in previous research it is obvious that participation in hospital care concerns more than being involved in decision-making and receiving information.

Background: A major and complex challenge when trying to support individuals with dementia is meeting the needs of those who experience changes in behaviour and mood. Aim: To explore how a sensor measuring electrodermal activity (EDA) impacts assistant nurses' structured assessments of problematic behaviours amongst people with dementia and their choices of care interventions. Methods: Fourteen individuals with dementia wore a sensor that measured EDA. The information from the sensor was presented to assistant nurses during structured assessments of problematic behaviours. The evaluation process included scorings with the instrument NPI-NH (Neuropsychiatric Inventory-Nursing Home version), the care interventions suggested by assistant nurses to decrease problematic behaviours, and the assistant nurses' experiences obtained by focus group interviews. Results: The information from the sensor measuring EDA was perceived to make behavioural patterns more visual and clear, which enhanced assistant nurses' understanding of time-related patterns of behaviours. In turn, this enhancement facilitated timely care interventions to prevent the patterns and decrease the levels of problematic behaviour. Conclusion: With the addition of information from the sensor, nursing staff could target causes and triggers in a better way, making care interventions more specific and directed towards certain times throughout the day to prevent patterns of problematic behaviours.