Family carers' experiences of attending a multicomponent psychosocial intervention program for carers and persons with dementia

Background: Psychosocial interventions for persons with dementia and their primary family carers are promising approaches to reducing the challenges associated with care, but, obtaining significant outcomes may be difficult. Even though carers in general are satisfied with such interventions, few studies have evaluated the interventions by means of qualitative methods. Aim: The objective of the study reported here was to investigate family carers’ experiences of a multicomponent psychosocial intervention program, and also to offer advice on how to develop the intervention program. Methods: Content analyses were taken from individual qualitative interviews conducted in 2012 with 20 carers (aged 50–82 years) who participated in a psychosocial intervention program that included education, individual and family counseling, and parallel group sessions for carers and persons with dementia. Results: Two main categories emerged: 1) benefits of the intervention program, which sets out the informants’ experiences for the benefits of participation, described in the subcategories “importance of content and group organization” and “importance of social support”; and 2) missing content in the intervention program, which details the informants’ suggestions for future interventions, contained in the subcategories “need for extended content” and “need for new group organization”. Conclusion: The carers found the interventions useful. The importance of even earlier and more flexible interventions for the family carers, the extended family, and the persons with dementia was underscored.publishedVersio

Living with chemotherapy-induced peripheral neuropathy

Attribution 4.0 International (CC BY 4.0)Background: The increasing number of cancer survivors means that many people are living with long-term effects after cancer treatment. Chemotherapy-induced peripheral neuropathy is a long-term effect that can impact on the life quality of those affected. Objective: The aim of the study was to gain greater insight into what it is like to live with chemotherapy-induced peripheral neuropathy. Method: The study has a qualitative design. We conducted semi-structured in-depth interviews with eight participants who all had symptoms of peripheral neuropathy more than a year after concluding chemotherapy treatment. The transcribed interviews were analysed using systematic text condensation. The findings of the study are discussed in the light of Antonovsky’s concept of ‘sense of coherence’. Results: The analysis led to the overall theme of ‘A changed life’. Two main categories emerged: ‘Bodily changes’ and ‘Learning to live with it’. The subcategories showed different aspects of these. Bodily changes affected activities of daily living and life-giving activities. The factors that had a bearing on how they learned to live with the changes included adaptations of various kinds to a new normal, their attitude towards the challenges they faced and an acceptance of side effects as the price they had to pay for surviving cancer. However, they also had expectations that life would be the same as before their cancer treatment. This made it more difficult to accept that their lives had changed. Conclusion: It is important that health personnel know about how long-term chemotherapy-induced peripheral neuropathy can impact on the daily lives of those who are affected. In order to help patients cope better with a changed way of life as a result of cancer treatment, health personnel should prepare them for the fact that life might not be the same as before.publishedVersio

Autonomy conquers all: a thematic analysis of nurses’ professional judgement encountering resistance to care from home-dwelling persons with dementia

This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativeco mmons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.Background: Adequate care support from home health care nurses is needed to meet the needs of an increasing number of home-dwelling persons with dementia and those who resist care. The decisions nurses make in home health care when encountering resistance from persons with dementia have an extensive impact on the quality of care and access to care. There is little research on what infuences nurse’s encounters with resistance to care from home-dwelling persons with dementia. Research aim: To get insight into how nurses experience resistance to care from home-dwelling persons with dementia. Methods: A qualitative research design using a thematic analysis was conducted following the six steps by Braun and Clarke. Data was gathered from three focus group and three individual interviews, and a total of 18 nurses from home health care participated. The interviews took place over a period of 5 months, from December 2020 to April 2021. Ethical considerations: Approved by the Norwegian Centre for Research, reference number 515138 and by the research advisers and home care managers in each section of the municipality. Results: Two main themes were identifed: 1) Challenged by complex and inadequate care structures and 2) Adapting care according to circumstances. There were three subthemes within the frst main theme: lack of systematic collaboration and understanding, insufcient fexibility to care, and the challenge of privacy. In the second main theme, there were three subthemes: avoid forced treatment and care to protect autonomy, gray-areas of coercive care and reduced care. The two main themes seemed to be interdependent, as challenges and changes in organizational structures infuenced how nurses could conduct their care practices. Conclusion: Our fndings indicate that nurses’ responsibility to decide how to conduct care is downplayed when facing resistance. Further, judgement is infuenced by contextual factors and characterized by a strong commitment to avoid forced treatment and care.A continuous challenge is to safeguard shared decision-making at the same time as it is balanced against risks of severe health damage in home-dwelling persons with dementia. A fundamental question to ask is whether autonomy does conquer all, even when severe health damage is at stake.publishedVersio

Trust-building interventions to home-dwelling persons with dementia who resist care

Background: Providing care for a home-dwelling person with dementia who resists care is an ethical and practical complex and challenging task. Faced with a growing number of persons with dementia, the healthcare professional’s understanding of how to best care for and prevent unnecessary use of coercion with persons with dementia is of key importance. Research aim: The aim of this study was to explore the use of trust-building interventions in home-dwelling persons with dementia resisting care, as described by health professionals in documents of decisions of forced treatment and care. Research design: A qualitative thematic document analysis inspired by critical realism was conducted. Participants and research context: Descriptions of trust-building interventions were extracted from 88 documents of forced treatment and care for home-dwelling persons with dementia, receiving home healthcare, in 2015 and 2016. Ethical considerations: Approved by the Regional Committee for Medical and Health Research Ethics, reference number 2017/788, and controlled by the Norwegian Centre for Research Data, reference number 54897. The study adhered to the guidelines of the Declaration of Helsinki. Findings: We found that “balancing safe care with the person’s integrity” was an overarching theme that permeated the descriptions of trust-building interventions in the study. Three main themes were identified when the data were analyzed: safeguarding care, protecting integrity, and optimizing the environment. Discussion and conclusion: Health professionals balanced on a thin line between care and integrity when met with resistance from person with dementia. However, the trust-building interventions used in the most challenging situations did not differ from the interventions used in general in dementia care. Two knowledge gaps were identified: how to perform appropriate assessments of situations of home-dwelling persons with dementia when met with resistance to care, and whether environmental initiatives may also benefit home-dwelling persons with dementia who are not easily cared for.publishedVersio

Health and quality of life after discharge from hospital: A prospective study on opioid treatment for acute pain after trauma or surgery

Objectives: The aim of this study was to examine opioid use, health, quality of life, and pain after discharge from hospital in opioid naïve patients receiving opioid treatment for sub acute pain after trauma or surgery. Methods: A prospective cohort with a four-week follow-up was conducted. Of the 62 patients included, 58 remained in the follow-up. The following questionnaires were assessed: Numeric Rating Scale for pain (NRS), EQ-5D-5L (health-related quality of life) and EQ-VAS (self-reported health). Paired t-test, two-sample t-test and chi square test were used in the study. Results: Every fourth participant still received opioid treatment at follow-up, and reported no significant increase in EQ-VAS. Overall, an improvement in EQ-5D-5L (0.569 (SD = 0.233) to 0.694 (SD = 0.152), p < 0.001) and EQ-VAS (55 (SD = 20) to 63 (SD = 18), p = 0.001) from baseline to follow-up was found. Pain intensity decreased in the same period (6.4 (SD = 2.2) to 3.5 (SD = 2.6), p < 0.001). An unmet need for information regarding pain management was reported by 32% of the participants. Conclusions: Our findings show that patients with acute pain, treated with opioids, reported improved pain intensity, health-related quality of life and self-reported health four weeks after discharge. There is room for improvement regarding the provision of patient information on pain management.publishedVersio

“We live as good a life as we can, in the situation we’re in” – the significance of the home as perceived by persons with dementia

Background: The coming years will see more persons with dementia living longer at home. However, “the home” is a complex concept with a multitude of meanings, varying among individuals and raising ethical and practical dilemmas in the support provided for this group. This study aims to increase the understanding of experiences and attitudes among persons with dementia related to living at home. Methods: Qualitative interviews were conducted with 12 persons, 69 to 89 years old, with a dementia diagnosis and living at home. Using a hermeneutical approach, the interviews were analysed as single texts, as parts of a set of texts and as a whole single text. The writings of care philosopher Kari Martinsen on “The home” were chosen as a framework for the theoretical interpretation of the findings. Results: The participants experienced a vital interconnectedness between the home and their lives, placing their home as a core foundation for life. Through stories of persisting love, they illuminated how their lived lives functioned as a foundation for their homes. Further, they described how progressing dementia disturbed rhythms of life at home, forcing them to adapt and change their routines and rhythms in life. Finally, in the hope of an enhanced future home the participants showed an acceptance of, but also a reluctance to, the prospect of having to move out of their homes at some future point. Conclusion: The study suggests that the participants’ home generated existential meaning for the participating persons with dementia. Their experience of being at home was based on a variety of individual factors working together in various ways. These findings imply a need to understand what factors are important for the individual, as well as how these factors interact in order to provide support for this group of people.publishedVersio

Effects of oral nutrition supplements in persons with dementia: A systematic review

Objective Persons with dementia are at risk of malnutrition, evidenced by low dietary intake, which has consequences for nutritional status, activity of daily living and disease progression. The effects of oral nutrition supplements (ONS) on nutritional intake, nutritional status, and cognitive and physical outcomes in older persons with dementia were evaluated. Methods PubMed, Medline, Embase, CINAHL and the Cochrane Central Register of Controlled Trials were searched in December 2017, and this was repeated in May 2019. The Preferred Reporting Items for Systematic Reviews and Analysis (PRISMA) checklist was used. Papers were considered if they presented experimental clinical trials using oral nutritional supplements to persons diagnosed with dementia, including Alzheimer's disease and mild cognitive impairment, and conducted in hospitals, nursing homes or homes. Results We included ten articles reporting nine clinical trials. A total of 407 persons with dementia were included, of whom 228 used ONS for 7 to 180 days. Nutritional intake improved by 201 to 600 kcal/day. Energy intake from ordinary foods was not affected, thus ONS improved the persons daily intake of energy and protein. Body weight, muscle mass, and nutritional biomarkers in blood improved in the intervention groups compared with the control groups. No effects on cognition or physical outcomes were observed. Conclusion ONS increases the intake of energy and protein and improves nutritional status in persons with dementia; however, RCTs with longer intervention periods are needed to investigate the impact on cognitive and functional outcomes.publishedVersio

Kvinners erfaringer med abortnemnder

Denne rapporten presenterer resultatene fra en amfunnsvitenskapelig studie om kvinners erfaringer med abortnemnder. Rapporten bygger på 13 dybdeintervju med kvinner som hadde erfaring med å søke om og gjennomleve andretrimesterabort innenfor et abortnemndsystem. Kvinnene hadde fått sine abortbegjæringer behandlet i nemnd ved åtte ulike sykehus i hele landet. Studien undersøkte kvinnenes helhetlige prosess med å søke andretrimesterabort innen rammene av et abortnemndsystem, opplevelser knyttet til selve møtet med nemnden og kvinnenes erfaringer knyttet til nemndenes myndighet til å fatte beslutning om deres liv samtidig som de skal ivareta kvinnenes rett til informasjon og veiledning. Kvinnene fortalte sine historier fra de oppdaget svangerskapet til tiden etter at abortfødsel var overstått. Analysen som presenteres i denne rapporten fokuserer på temaene 1) Forventninger og forberedelser til nemndsmøtet, 2) Å møte abortnemnden og 3) Tidsrammer og oppfølging. Studien viser at tiden før selve nemndsmøtet preges av varierende forkunnskaper og ulik og mangelfull informasjon til kvinnene om plikter og rettigheter ved nemndsbehandling. Muligheten for å få avslag preget kvinnene i forkant av nemndsmøtet, og gjorde kvinnenes beslutningsprosess vanskeligere. Videre viser studien at abortnemndene organiseres svært ulikt fra sykehus til sykehus. Noen kvinner opplevde at nemnden ga råd og støtte utover det å avklare om aborten oppfylte lovens kriterier. Mens noen opplevde nemndsmøtet som både belastende og meningsløst, opplevde andre det som en støtte. Metaforer som «eksamen» eller «avhør» ble brukt til å beskrive noen av kvinnenes møte med nemnden. Kvinner som hadde søkt om å få avslutte et ønsket svangerskap var frustrert over at partner ikke hadde plass som part i nemndsystemet. Tidsaspektet formet kvinnenes opplevelser med nemndsbehandling. For noen var det å vente på nemnden en belastning. For andre gjorde lovens grenser for svangerskapets avslutning at vanskelige avgjørelser måtte tas på kort tid. Kvinnene hadde et stort behov for støtte og oppfølging etter abortfødsel, og i dag er det ikke noe system som sikrer dette. Abortnemndene utgjør bare én del av et større system som aktiveres når en kvinne søker en andretrimesterabort. Kvinnenes erfaringer med abortnemndsystemet preges av skjevheten i makt mellom dem selv og nemnden. Denne skjevheten begrenser rommet for tvil og muligheten for en god og opplysende dialog. Noen kvinner opplever at møtet med nemnd gir dem større kontroll over egen situasjon. Slik det fungerer i dag favoriserer nemndsystemet ressurssterke kvinner og kan bidra til å ytterligere marginalisere sårbare kvinner. Uklarhet og ulik praksis knyttet til abortnemndens oppgave utover det å fatte et vedtak om andretrimesterabort, skaper risiko for at viktig informasjon ikke formidles. Dette svekker kvinners rett til å ikke delta i nemndsmøte samt hennes mulighet til å handle på bakgrunn av riktig informasjon. Dagens system tar i liten grad høyde for at de fleste andrestrimesteraborter er avbrudd av ønskede svangerskap. For kvinner som opplever dette virker abortnemdsystemet fremmedgjørende og lite forståelsesfullt. Dette kan gjøre den vanskelige tiden etter en gjennomført abort ekstra krevende. Dagens helsesystem sikrer ikke god oppfølging til kvinnene som gjennomgår en andretrimesterabort. Tiden etter en gjennomført abortfødsel er den mest sårbare for kvinnene som har vært gjennom abortnemndsystemet. Det er grunn til å stille spørsmål til ressursbruken knyttet til nemndsmøtene i kontrast til få ressurser til oppfølgingstjenester