OBJECTIVE: This study aimed to explore the attitudes, practices and work-related experiences among Swedish physicians regarding the referral process, integration and transition between oncology care and palliative care (PC).

METHODS: A cross-sectional online survey was performed with a study-specific questionnaire in 2016-2017 in south-eastern Sweden. Physicians working with cancer patients within surgical specialties, medical specialties and paediatric oncology participated.

RESULTS: The vast majority of the 130 participating physicians (99.2%) stated that PC was beneficial for the patient and were positive about early integration of PC (65.5%). Still, only 27.6% of the participants introduced PC at an early stage of non-curable disease. However, paediatric oncologists had a very early introduction of PC in comparison with medical specialties (p = 0.004). Almost 90% of the study population said they wanted to know that the patient had been taken care of by another care facility.

CONCLUSIONS: Despite the physicians' positive attitude towards early integration and referral to PC, they often acted late in the disease trajectory. This late approach can reduce the patient's opportunity of improving quality of life during severe circumstances. There is a need for in-depth knowledge of the physicians' challenges in order to bridge the gap between intentions and actions.

Inrätta en nationell handlingsplan som säkerställer skydd, stöd och stadigvarande boende för våldsutsatta oavsett kommun, föreslår forskare i ett projekt om kvinnor i hemlöshet.

Patients with sickle cell disease (SCD) suffer from impaired health-related quality of life (HRQoL). This study aimed to determine the level of HRQoL, sense of coherence (SOC), and self-efficacy (SE) in a sample of SCD patients, and to explore predictors of their physical and mental HRQoL. A cross-sectional descriptive study was conducted on 83 SCD patients of one university hospital. The data of the study was collected through Persian versions of the Short-Form Health Survey SF-36 (RAND 36-item), the Sense of Coherence Scale (SOC-13), and the Sickle Cell Self-Efficacy Scale (SCSES). The mean age of the patients was 26.34 ± 8.19 years old. Patients' mean scores for the Physical Component Summary (PCS), Mental Component Summary (MCS), SOC, and SCSES were 40.57 ± 17.18 (range: 0-100), 50.44 ± 17.95 (range: 0-100), 52.40 ± 15.35 (range: 13-91), 26.40 ± 6.96 (range: 9-45), respectively. Regression models showed that the level of the patients' SOC, was the main predictor of the MCS (β = 0.37, p < 0.001). However, the level of the patients' SE was the main predictor of the PCS (β = 0.30, p = 0.004). Also, "blood transfusion history" in patients was a common predictor for both the PCS (β =  - 0.28, p = 0.008) and the MCS (β =  - 0.29, p = 0.003). These results can assist nurses and clinicians to plan clinical interventions for SCD patients by focusing on increasing the level of the SOC and SE and improving SCD patients' HRQoL. Furthermore, measuring the level of the SOC and self-efficacy as screening tests are useful to find patients with a greater risk of impaired HRQoL.

AIM: The aim of this study was to describe the experiences of parents handling oral anticancer drugs in a home setting.

METHODS: Parents of children with cancer were recruited from a paediatric oncology ward in Sweden to participate in an interview. The interviews were transcribed verbatim and subjected to qualitative content analysis.

RESULTS: We found the following categories and subcategories: parents' views on the provided information-lack of, too little or contradictory information, and parents' preferences for information delivery; safety over time; correct drug dose; and drug administration. As time passed, most parents adapted to their child's illness, felt safer and found it easier to take in and process any given information. Parents preferred information in different formats (written, movie clips and orally) and in their mother tongue. Many parents were aware of the importance of giving an accurate dose to their child and described the process of drug administration as overwhelming.

CONCLUSION: Parents need to be provided with accurate, timely, nonconflicting and repeated information-in different forms and in their mother tongue-on how to handle oral anticancer drugs at home.

Presentationen kommer att fokusera familj och närstående och hur vården kan arbeta för att möta behov av stöd samt se till närståendes egen kraft och resurser. Hur är det att vara närstående till en person med palliativa vårdbehov? Hur vet vi vilka som behöver stöd, vilken typ av stöd och när och vad kan vi göra?

Bakgrund: Självskattningsinstrumentet Quality of Life in Life Threatening Illness - Family carer version (QOLLTI-F) är utvecklat för att mäta livskvalitet hos närstående till personer i livets slut. Instrumentet är översatt till svenska och har uppvisat tillfredsställande innehållsvaliditet. Vidare validering behövs.

Syfte: Att utvärdera mätegenskaper för QOLLTI-F, med fokus på begreppsvaliditet och reliabilitet, bland närstående till personer i livets slut.

Metod: Studien har en tvärsnittsdesign och data samlades in vid två specialiserade hemsjukvårdsenheter i två städer i Sverige. Totalt 114 närstående (61% kvinnor, medelålder 67,5 år) besvarade en enkät bestående av bakgrundsfrågor och självskattningsinstrumenten QOLLTI-F, Caregiver Burden Scale (CBS), Preparedness for Caregiving Scale (PCS) samt Reward of Caregiving Scale (RCS). Konvergerande validitet utvärderades genom att korrelera QOLLTI-F med CBS, PCS och RCS. För att utvärdera den relativa betydelsen av QOLLTI-Fs dimensioner för närståendes övergripande livskvalitet användes multipel linjär regressionsanalys. Intern konsistens utvärderades med Cronbach’s alfa.

Resultat: De allra flesta närstående hade svarat på alla frågor och hela svarsskalan från 0–10 användes för nästan alla frågor. Samtliga QOLLTI-F dimensioner förutom patientens tillstånd korrelerade som förväntat med upplevelse av påfrestning, förberedelse för att vårda och/eller egen behållning vilket stöder konvergerande validitet. Dimensionerna i QOLLTI-F förklarade tillsammans 70,5% av variationen i övergripande livskvalitet; närståendes eget tillstånd och närståendes perspektiv hade högst förklaringsvärde. Cronbach’s alfa varierade mellan 0,58–0,86.

Betydelse: Självskattningsinstrumentet QOLLTI-F uppvisade goda mätegenskaper för att skatta närståendes livskvalitet i den aktuella studien. Resultaten indikerar att den övergripande frågan kan användas enskilt, speciellt när intresset är att fånga livskvalitet utifrån närståendes eget tillstånd och perspektiv.

INTRODUCTION: When a child is diagnosed with cancer, the whole family is affected, and parents struggle to grasp challenging information regarding diagnosis and prognosis. Most parents and children want honest communication and openness, yet this remains a complex and challenging task for healthcare professionals.

OBJECTIVES: To describe bereaved mothers' and fathers' reports of communication of their child's cancer diagnosis and when the illness became incurable.

METHODS: Data from a Swedish population-based survey conducted in 2016, including 135 mothers and 97 fathers who had lost a child to cancer 1-5 years earlier, were studied regarding the parents' reports of communication about their child's illness.

RESULTS: A vast majority of parents wants information when their child's illness becomes incurable, and this need is generally met. However, fathers to a lesser extent than mothers, reported that they were informed about it. According to parents' reports 87 % of children received diagnostic information and 44 % of the children received prognostic information.

CONCLUSION: A vast majority of both mothers and fathers would like to know when their child's illness becomes incurable, yet it remains unknown to what extent they want their child to be informed. This article is protected by copyright. All rights reserved.

BACKGROUND: Living with a parent facing life-threatening illness and losing a mom or dad at a young age can cause both short- and long-term health problems. Without satisfactory support, adolescents' and young people are at risk of developing low self-esteem, behavioural difficulties (e.g., anger and aggression), long-term illness or premature death caused by severe mental illness, substance abuse, self-harm and suicide attempts. The aim of this study was to explore adolescents' and young people's needs and preferences for support as they live with a parent with life-threatening cancer.

METHODS: Qualitative interviews were conducted with 10 respondents (17-24 years) in Norway and Sweden. Data were analysed through grounded theory according to Charmaz.

RESULTS: Adolescents' and young peoples' needs and preferences for support were described through the main category 'To feel safe and secure and to be prepared' and further broken down into five subcategories 'Relationships in the immediate family-balancing support and protection'; 'The social network-support and normalcy in a carefully selected group'; 'Maintaining everyday life-challenges in school and working life'; 'The right support at the right time-competence, trust and continuity in meeting health care professionals'; and 'Support outside the home-an opportunity for full transparency'.

CONCLUSION: Adolescents' and young peoples' preferences for support when living with a parent facing life-threatening illness are individual and unique, but they share a common need to feel safe and secure and to be prepared. Adolescents and young people express that they primarily want support from parents and friends, but they also want support from health care professionals, especially in situations when the ill parent becomes worse. Therefore, it is of the utmost importance for health care professionals to identify the most vulnerable adolescents and young people by mapping their social networks and paying extra attention to their needs for support when there is deterioration in the parent's illness state. This study also highlights the importance for health care professionals to establish a good relationship with adolescents and young people to meet their needs and preferences for support. In addition, information and support are needed in a timely manner and adapted to the life-threatening ill parent's illness state and individual's needs and preferences to optimise preparedness.

Bakgrund: Palliativ vård är baserad på en helhetssyn på människan med fokus på livskvalitet och värdighet. Fysisk aktivitet ger positiva effekter för patienter med avancerad cancer men inom palliativ vård är orken ofta begränsad hos den sjuke. Det saknas forskning angående hur upplevelsen av rörelse kan påverka välbefinnandet och hur personal kan främja fysisk aktivitet på en specialiserad palliativ vårdavdelning.

Syfte: Att beskriva erfarenheterna av en Rörelsestig på en specialiserad palliativ vårdavdelning.

Metod: Studien är en kvalitativ studie med induktiv ansats. Initialt skapades en 60 meter lång promenadstig med 4 utspridda övningsstationer på hospiceavdelningen. Data om erfarenheterna av Rörelsestigen samlades in genom fyra fokusgruppintervjuer med 11 vårdpersonal och en volontär. Inspelade samtal transkriberades och data analyserades med kvalitativ innehållsanalys.

Resultat: Dataanalysen resulterade i fem underteman. De första två; ’Ett inspirerande och utmanande verktyg att främja fysisk aktivitet’ samt ’Rörelsestigen innebär gemenskap’ var beskrivande, baserade på deltagarnas personliga erfarenheter och reflektioner. I de tre andra undertemana, ’Mål ger dagen mening’, ’Återtar kontroll över sig själv’ och ’Jag är kvar i livet!’ uttryckte deltagarna sig om patienters och närståendes upplevelser. Undertemana samlades under huvudtemat ’Ett värdigt liv i rörelse nära döden.’

Betydelse: Resultaten visar ett brett spann i upplevelser av Rörelsestigen, relaterade till olika aspekter av att vara en människa i en svår situation. Studien antyder att upplevelse av rörelse kan främja välbefinnandet och värdighet för patienter inom inneliggande palliativ vård. Rörelsestigen är enkel att sätta upp och har möjlighet att vara ett användbart verktyg för personal att kunna främja fysisk aktivitet.

Background: The loss of a close person from sudden cardiac arrest (CA) leaves family members at risk of developing grief reactions such as symptoms of prolonged grief, anxiety, depression, and posttraumatic stress. The aim was to describe longitudinal variations in grief reactions and its association with professional and social support among bereaved family members after a close person's death from sudden CA.

Methods: This longitudinal multimethod survey included 69 bereaved family members who completed a questionnaire 6 and 12-months after the CA, including the Prolonged Grief Disorder-13, Hospital Anxiety and Depression Scale, PTSD Checklist for DSM-5, and Multidimensional Scale of Perceived Social Support. Qualitative data were collected by open-ended questions. Quantitative data was analyzed using Wilcoxon signed-rank test and linear regression analysis while written comments were analyzed using qualitative content analysis.

Results: The median age was 62 years, 67 % were women, and 38 % had been present during the resuscitation attempts. Using the cut-off scores at the 6- and 12-month assessments respectively, 14 % and 17 % reported symptoms of prolonged grief, 32 % and 26 % symptoms of anxiety, 14 % and 9 % depression, and 4 % and 1 % posttraumatic stress. Professional and social support at the 6-month assessment were significantly associated with symptoms of prolonged grief, anxiety, depression, and/or posttraumatic stress at the 12-month assessments but could not predict any changes in the grief reactions.

Conclusions: Family members' grief reactions point to the importance of proactive and available support over time to meet family members' needs.

Bakgrund: Ett palliativt förhållningssätt omfattar uppföljning av närstående vilket ofta saknas vid plötsliga dödsfall. Närstående riskerar då att lämnas utan professionellt stöd med obesvarade frågor, vilket kan bidra till förlängd sorg.

Syfte: Att utforska det professionella och sociala stödets betydelse för symtom på förlängd sorg hos närstående till personer som avlidit till följd av plötsligt hjärtstopp.

Metod: Denna korrelerande observationsstudie baserades på en enkät till närstående sex och tolv månader efter dödsfallet. Enkäten bestod av bakgrundsfrågor om de närstående, förlusten, och professionellt stöd, samt validerade skattningsskalor för att mäta förlängd sorg (PG-13) och socialt stöd (MSPSS). Data analyserades med regressionsanalyser.

Resultat: Deltagarna (n=69) var i genomsnitt 61 år (37–71) och flertalet var kvinnor (67%). Vanligaste relationen till den avlidne var vuxna barn (52%) och efterlevande partner (36%). Vid sex månader skattade de närstående som hade ett professionellt stöd högre symtomnivåer av förlängd sorg än de utan professionellt stöd (B=10,28,p=0,001). Ett signifikant samband fanns även mellan högre socialt stöd och lägre självskattade symtom på förlängd sorg, oavsett om stödet kom från familj (B=-3,24, p=0,001), vänner (B=-2.43, p=0,020) eller andra betydelsefulla personer (B=-2,29, p=0,010). Vid tolv månader kvarstod endast sambandet till professionellt stöd (B=9,05, p=0,020). En majoritet skattade färre eller oförändrade symtom på förlängd sorg vid tolv månader jämfört med sex månader, men en betydande andel skattade högre symptomnivåer (33%).

Betydelse: Sambandet mellan professionellt stöd och höga symtomnivåer av förlängd sorg visar på betydelsen av efterlevandestöd. Genom att stödja närstående i kommunikationen med familj och vänner kan det sociala stödet stärkas. För att understödja den närståendes sorgeprocess bör stöd erbjudas i både akut och palliativ kontext.

OBJECTIVE: To identify early symptoms and changes in QoL among men with primary localized prostate cancer (PC) who later develop metastases.

METHODS: From an ongoing prospective study of 3.885 men with localized PC, primarily treated with radiotherapy (RT), a subsample of men developing metastatic PC (mPC) following the first year after the start of RT and that had died during the follow-up (mPC group, n = 107) were matched against men who did not develop metastases (non-mPC group, n = 214). Data were collected using the EORTC QLQ-C30 and PCSS instruments. Non-parametric tests were performed for comparisons at baseline, end of RT, 3 months, and 1, 2, 3, and 5 years after RT.

RESULTS: The final sample consists of 317 men (mPC n = 106; non-mPC n = 211) who had completed at least one questionnaire. Initially, symptom levels were generally low and QoL and functioning high in both groups. An increasing difference between the groups was found, where the mPC group gradually deteriorated from the 2-year follow-up. Significant differences were found for several outcomes at 3 and 5 years. In a sensitivity analysis, where metastatic patients were removed from the time-point of verified metastases, most differences did not remain significant. Significant deterioration over time was seen within both groups for some outcomes.

SIGNIFICANCE OF RESULTS: The results indicate that unmet supportive needs occur over time among these men. Worsening QoL or functioning and symptoms may be difficult to recognize when the development is gradual over several years, and with various access to systematic follow-up in late phases. This highlights the need for continuous monitoring of PC patients to detect needs for supportive interventions early and throughout the disease course, also among those with non-metastatic disease who have undergone curatively intended treatment.

BACKGROUND: Patients are affected by various symptoms after allogeneic hematopoietic stem cell transplantation (allo-HSCT) that can affect recovery. Research has mainly focused on symptom occurrence; thus, little is known about patients' overall symptom burden.

OBJECTIVE: The aim of this study was to examine patient-reported symptom burden in the first year after allo-HSCT and whether a high symptom burden 4 months after allo-HSCT predicts recovery, that is, general health and sick leave, 1 year after transplantation.

METHODS: Allo-HSCT patients aged 18 to 65 years were included (n = 189). Questionnaire data were collected on admission to the allo-HSCT unit, as well as 4 and 7 months and 1 year after allo-HSCT. Logistic regression evaluated relationships between demographic characteristics, chronic graft-versus-host disease, physical activity, and a high symptom burden.

RESULTS: Tiredness, susceptibility to infection, disinterest in sex, and physical weakness remained the most frequent symptoms, while distressing symptoms varied during the first year after allo-HSCT.Poor general health 1 year after allo-HSCT was associated with older age, low physical activity, and a high symptom burden 4 months after allo-HSCT. Full-time sick leave 1 year after allo-HSCT was associated with chronic graft-versus-host disease, low physical activity, and a high symptom burden 4 months after transplantation.

CONCLUSIONS: Experiencing a high symptom burden 4 months after allo-HSCT can affect recovery 1 year after transplantation. Furthermore, low physical activity 4 months after allo-HSCT can predict both general health and sick leave 1 year after transplantation.

IMPLICATIONS FOR PRACTICE: Repeated symptom assessment, including experienced distress, is central for reducing overall symptom burden and supporting recovery after allo-HSCT.

Background: Cancer is one of the most common diseases and it has many physical and psychological consequences. Women with cancer are more likely to suffer from sexual dysfunction (SD) than healthy women.

Objective: To estimate the overall prevalence of SD in women with cancer.

Materials and Methods: The international databases Google Scholar, Embase, PubMed, Web of Science, and Scopus were searched for related articles without any time limitation. The keywords "Neoplasia", "Tumor", "Cancer", "Malignancy", "Female Sexual Function Index", "FSFI", and "female sexual dysfunction" along with their combinations were used in the search. Inconsistencies in the data were examined using the I² test. The data were analyzed using the meta-analysis method and the random-effects model in the Stata software.

Results: The analysis of 24 articles with a sample size of 5483 women showed that the prevalence of SD in women with cancer was 66% (95% CI: 59-74%). The highest and lowest prevalence were in Africa and Europe, respectively (75%; 95% CI: 66-83% vs. 43%; 95% CI: 26-60%, respectively). There was no relationship between the prevalence of SD and the mean age of the women, sample size, yr of publication, or quality of articles.

Conclusion: SD is highly prevalent in women with cancer. African and American women with cancer have a higher average SD prevalence than Asian and European ones.

A completed cancer treatment does not automatically mean an end to the challenges often following cancer. The need for cancer rehabilitation grow as the number of people that survives cancer increases. It is not entirely clear which rehabilitation services are in demand or which actors should offer these. Through a literature review, this study has shed light on the role of civil society in the Nordic countries in rehabilitation after cancer, as well as study participants’ experiences of cancer rehabilitation. The results of the literature review show that few studies have been published addressing the role of civil society in cancer rehabilitation. People who have undergone a cancer disease often need support, and support from people in a similar situation was appreciated by many. The results state that civil society plays a significant role in the organization of cancer rehabilitation. 

Trots insikten om den sociala delens betydelse för en holistisk vård saknas idag personcentrerade lösningar på hur vi kan möta upp och stödja den döendes och de närståendes sociala situation i palliativ vård.

Syftet med projektet är att utforma en app för den som är nära livets slut och hens närstående. Målet är ett digitalt verktyg som ska bidra till att inspirera och engagera människor att belysa livet, den unika individen och skapa upplevelser av gemenskap, vardag, hopp och delaktighet nära livets slut. Genom att utgå från det sociala mötet och fokusera på att bidra med konkret inspiration för att stimulera till aktiviteter, samtal och möten.

En innovationsprocess används där patienter med behov för palliativ vård, närstående, experter från vården och forskare deltar för att skapa förutsättningar för en användarcentrerad och holistisk digital tjänst. Insikter och koncept utformas i workshops med närståendegrupp (12 personer som förlorat närstående) samt intervjuer med slutanvändare och workshops med expertgruppen (10 experter med erfarenhet av palliativvård). Genom att involvera användare löpande i utvecklingen samskapas en lättanvänd, skalbar, jämlik och användarvänlig tjänst med hög grad av personifiering.

Resultat från workshops och intervjuer är positiva och bekräftar ett behov av ett verktyg med fokus på det sociala mellanmänskliga mötet. Användartester av första prototypen bidrog till en mer innovativ användning av bild och video och utökad fokus på imaginär inspiration som grundas på sinnen och livsämnen.

Projektet har potential att addera förutsättningar att underlätta och inspirera personer nära livets slut och närståendes möten under vårdperioden med fokus på sociala upplevelser. En förbättrad social upplevelse kan minska stress för personen och närstående, möjliggöra för personalen att fokusera på de andra viktiga områdena av vården samt skapa bättre förutsättningar för kommunikation mellan personer nära livets slut, närstående och personalen.

Purpose: The provision of high-quality palliative care is challenging, especially during a pandemic like COVID-19. The latter entailed major consequences for health care systems and health care personnel (HCP) in both specialist and community health care services, in Norway and worldwide. The aim of this study was to explore how the HCP perceived the quality of palliative care in nursing homes, medical care units, and intensive care units during the COVID-19 pandemic.

Methods: This study had a cross-sectional design. A total of 290 HCP from Norway participated in the study (RR = 25.8%) between October and December 2021. The questionnaire comprised items concerning respondents’ demographics and quality of care, the latter measured by the short form of the Quality from the Patient’s Perspective—Palliative Care instrument, adapted for HCP. The STROBE checklist was used.

Results: This study shows that the HCP scored subjective importance as higher in all dimensions, items and single items than their perception of the actual care received. This could indicate a need for improvement in all areas. Information about medication, opportunity to participate in decisions about medical and nursing care and continuity regarding receiving help from the same physician and nurse are examples of areas for improvement.

Conclusion: Study results indicate that HCP from nursing homes, medical care units, and intensive care units perceived that quality of palliative care provided was not in line with what they perceived to be important for the patient. This indicate that it was challenging to provide high-quality palliative care during the COVID-19 pandemic.

De 6 S:n, självbild, symtomlindring, sociala relationer, sammanhang, strategier och självbestämmande, har använts för att bidra till personcentrerad palliativ vård i Sverige sedan 1990-talet. De 6 S:n har traditionellt använts inom specialiserad palliativ vård, men passar också för allmän palliativ vård under hela livsspannet. Palliativ vård av barn ställer stora krav. Ett projekt där De 6 S:n används för att bidra till personcentrerad palliativ vård av barn kommer att presenteras. Inom äldreomsorg ställs stora krav på att bevara integritet och personcentrering när funktion, kognition och möjlighet till självbestämmande börjar avta. Vi presenterar forskning om hur kroppslig omvårdnad inom äldreomsorg kan bli mer personcentrerad och en modell för att förbättra självbestämmande och därmed bidra till en personcentrerad palliativ vård inom äldreomsorgen. De 6S:n har diskuterats, preciserats och utvecklats av det nationella 6S-nätverket för att beskriva det teoretiska innehållet och för att utveckla den praktiska användbarheten. Diskussionen är levande och ständigt fortgående för att förbättra personcentrerad palliativ vård för personer i olika åldrar och olika vårdkontext.

Background: COVID-19 is an infectious disease caused by a novel Coronavirus which transmits from person to person throughout the world. This study aimed to explore the lived experiences of nurses' caring for patients with COVID-2019 in the context of the healthcare system of Iran.

Methods: This is a phenomenological study with 13 participant nurses (6 men and 7 women) who were caring for COVID-19 patients in one of the university hospitals in Southeast of Iran. Qualitative data were analysed by the seven steps of Colaizzi's method.

Results: Participants reported around a five-month history of caring for COVID-19 patients. After analysis, 597 codes, 16 categories, four sub-themes, and one theme were extracted. "Caring from self-sacrifice to avoidance" was the main theme of the study with sub-themes of "Anxiety Chain", "Manifestation of Humanitarian Caring", "Ethical Challenges", and "Challenges of Overcoming Crisis".

Conclusions: Nurses explained their caring experiences with patients on a continuum from humanitarian caring and self-sacrifice to caring avoidance. Because of the multi-sources of psychological stress and ethical challenges together with this infection, healthcare managers should plan for holistic regular psychological support services, prevention of job inequalities, and do strategic planning for access to enough resources in the healthcare system.

OBJECTIVES: Multiple studies have focused on severely ill patients in the role as parents of dependent children, yet few have explored the thoughts and feelings within this group during palliative home care.

METHODS: This qualitative study derives from a pilot intervention study, the Family Talk Intervention (FTI), in specialized palliative home care. The FTI is a support program with the main goal to increase family communication about illness-related topics. The study is based on field notes from 104 sessions with 20 parents taken by an interventionist during intervention delivery. The field notes were analyzed using the principles of qualitative content analysis.

RESULTS: The field notes revealed several challenging situations for parents with severe illness. A major issue was how to find ways to talk to their children about their illness and prognosis. The parents expressed guilt for being unable to fulfill their roles as parents and partners. Existing family conflicts had escalated with the illness, according to some parents. Despite being affected by illness, parents tried to have hope, if only for small things - such as a period of ordinary family life.

SIGNIFICANCE OF RESULTS: Severely ill parents in specialized palliative home care seek support regarding how to communicate and stay connected to their roles in the family, which is a struggle when a parent is cared for at home, while it in contrast may promote normality and hope. Communication with children is vital and needs to be brought to the attention of health-care professionals. A family-centered focus, involving both parents and children, should be embraced.

BACKGROUND: Among a growing population of older persons, many affected by multiple diseases and complex needs, are cared for in nursing homes. Previous studies of nursing homes have highlighted the importance of personalised palliative care. Nevertheless, we know little about whether everyday care practice involving assistant nurses and frail older persons accomplishes ethical encounters, especially in assisted bodily care. Therefore, the aim of this study was to understand and conceptualize the encounter between residents and assistant nurses in bodily care-situations at the end of life in a nursing home.

METHODS: Focused ethnographic design was used. Residents and assistant nurses from one nursing home in an urban Swedish area participated in this study. Data were collected for 6 months and consisted of 170 h of fieldwork, including participant observation and interviews. Observations and digitally recorded interviews were analysed thematically. Five public community stakeholders contributed to the analysis by discussing preliminary results and clinical implications in a focus group.

RESULTS: Four themes, each encompassing both barriers to and facilitators of ethical encounters in assisted bodily care, were identified: Coping with the impact of workplace demands; Interacting in dialogue and communication; Experiencing involvement in the provision of assisted bodily care; and Adapting to good care and comfort.

CONCLUSIONS: The findings suggest that accomplishing ethical encounters in assisted bodily care practice in a nursing home context has many barriers that are related to communication, relationships, and quality of care. Barriers included lack of resources, ineffective communication, and work values, which hinder ethical encounters. Nevertheless, moral sensitivity, genuine interest in resident engagement, and collaborative practices facilitated ethical encounters and are thus central to person-centred care. Uniquely, assistant nurses must be aware of their responsibility for performing their tasks in response to residents' vulnerability. We therefore suggest that moral deliberation over issues of communication, compassion, decision-making, and behavior, with particular consideration for the care relationship. To further improve the quality of care, organisations must provide resources for the building of relationships, as well as time for assistant nurses to recover after long shifts. Additional research is warranted, including implementation of ethically grounded palliative care.

BACKGROUND: Nursing homes (NHs) are populated by the frailest older people who have multiple physical or mental conditions and palliative care needs that may convey the violation of dignity. Although dignity is a commonly used concept and a core value of end-of-life care, it is assumed to be complex, ambiguous, and multivalent. Thus, the aim of this study was to explore aspects of dignity in older persons' everyday lives in a NH.

DESIGN: A focused ethnographic study design.

METHODS: Data consisted of 170 h of fieldwork, including observations (n = 39) with residents (n = 19) and assistant nurses (n = 22) in a Swedish NH. Interviews were undertaken with residents several times (in total, n = 35, mean 70 min/resident). To study dignity and dignity-related concerns, we used the Chochinov model of dignity to direct the deductive analysis.

RESULTS: The study showed that residents suffered from illness-related concerns that inhibited their possibilities to live a dignified life at the NH. Their failing bodies were the most significant threat to their dignity, as loss of abilities was constantly progressing. Together with a fear of becoming more dependent, this caused feelings of agony, loneliness, and meaninglessness. The most dignity-conserving repertoire came from within themselves. Their self-knowledge had provided them with tools to distinguish what was still possible from what they just had to accept. Socially, the residents' dignity depended on assistant nurses' routines and behaviour. Their dignity was violated by long waiting times, lack of integrity in care, deteriorating routines, and also by distanced and sometimes harsh encounters with assistant nurses. Because the residents cherished autonomy and self-determination, while still needing much help, these circumstances placed them in a vulnerable situation.

CONCLUSIONS: According to residents' narratives, important dignity-conserving abilities came from within themselves. Dignity-conserving interventions did occur, such as emphatic listening and bodily care, performed in respect for residents' preferences. However, no strategies for future crises or preparing for death were observed. To protect residents' dignity, NHs must apply a palliative care approach to provide holistic care that comprises attention to personal, bodily, social, spiritual, and psychological needs to increase well-being and prevent suffering.

Purpose

Registered nurses have a key role in supporting patients during the trajectory of allogeneic hematopoietic cell transplantation (allo-HCT). However, the circumstances for performing nursing are not previously outlined therefore the purpose of this study was to explore the conditions for nursing care in allo-HCT.

Method

An explorative design, inspired by Experienced based co-design was used to gather experiences, thoughts and visions of nursing care in allo-HCT by means of workshops. Thematic analysis was applied to analyse the data.

Result

An overarching theme that was defined from the data was nursing as a balancing act and illustrating conditions for performing nursing in a highly medical-technical environment. The theme included three sub-themes: Fragmented care vs holistic care outlining how the holistic approach to care disappeared when the care became fragmented; Proximity vs distance illuminating the balance between seeing the patient as an independent person despite illness and the need for support; Teamwork vs stand-alone demonstrating the difficulties inherent in adapting to both teamwork and independence in nursing.

Conclusion

This study shows that the conditions for RNs and nursing care in allo-HCT care is to balance tasks and approach towards the patient and themselves. RNs must weigh and balance what is most important in the moment and where something else often has to be put aside. It is difficult for RNs to find the time to plan each patient's care and to support the patient in the way they see as most optimal to prepare for discharge, self-care and rehabilitation.

BACKGROUND: Palliative care services seek to improve the wellbeing of family carers of people living with serious and life-limiting illness. To help achieve this goal, systematic reviews have recommended priority areas for family carer research and the need to improve the quality of study design. Policy makers have also advocated for enhanced family carer support. However, there are specific methodological considerations and challenges in designing and conducting carer research conducted during the course of the serious illness trajectory and in bereavement.

AIM: To develop strategies to improve the design and conduct of research with family carers.

DESIGN: Expert elicitation study using an adapted version of the 'Identify, Discuss, Estimate and Aggregate' elicitation protocol, supplemented with strategies from peer-reviewed literature.

SETTING/PARTICIPANTS: Nine members of the management committee of the European Association for Palliative Care's Reference group on family carer research, comprising international senior research academics in family caregiving.

RESULTS: A compilation of recommended strategies and checklist was created to: (a) help researchers plan research involving family carers focussing on: preparation, conduct and dissemination and (b) assist ethics committees and funding bodies to evaluate proposals.

CONCLUSIONS: The strategies and checklist for conducting research with family carers may enhance methodologically rigorous research. Consequently, researchers, practitioners and policy makers will not only gain a more comprehensive understanding of the unmet needs of family carers but also promote the development of empirically sound interventions.

Bakgrund: Det är vanligt att närstående tar stort ansvar för vård i hemmet men också att de känner sig oförberedda inför livet med en svårt sjuk partner. Många upplever en psykiskt och social påfrestning, nedsatt hälsa och bristande insikt om framtiden. Högre grad av förberedelse kan bidra till mindre oro, ångest, nedstämdhet och bättre välbefinnande. Med syfte att erbjuda stöd har en webbplats, narstaende.se, innehållande filmer där sjukvårdspersonal (autentiska) möter närstående (skådespelare) i en situation likt den de närstående befinner sig i utvecklats. Det finns även informativa texter samt länkar till vidare information och ett chattforum.

Syfte: Att utvärdera användbarhet, innehåll och de närståendes upplevelse av narstaende.se.

Metod: Närstående vid ASIH enheter i Stockholm inkluderas och de besvarar en enkät innan tillgång tillwebbplatsen samt efter 4 veckor. I enkät två ingår frågor om användande av webbplatsen, hur de uppfattat filmer, texter, länkar samt chatt, inverkan på förberedelse att vårda. De närstående som samtycker intervjuas för att få djupare förståelse.

Resultat: Data från enkäter visar att flertalet anser att tillgången till narstaende.se kom vid lämplig tidpunkt och att de skulle rekommendera den till andra i liknande situation. I intervjuer har närstående uttryckt att de tagit vara på dagarna på ett annat sätt, känt stöd i att arbeta eller vara hemma mer, göra aktiviteter på egen hand, förberett praktiska frågor samt fått bekräftelse i att ”det här är vanligt eller naturligt att känna”. Några uttrycker att delar av informationen samt enkäterna varit till särskild hjälp, tankar och känslor har väckts som kan vara svåra men som samtidigt beskrivs viktiga i bearbetning av situationen.

Betydelse: Projektet kan ge kunskap om hur stöd i webbaserad form tas emot, om och hur det används och om intervention kan bidra till ökad förberedelse.

OBJECTIVES: Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, "narstaende.se," from the perspective of spouses of patients receiving specialized home care.

METHODS: A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used.

RESULTS: Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend "narstaende.se" to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life.

SIGNIFICANCE OF RESULTS: A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website's potential to provide support and increase preparedness for family caregivers in general.

Bakgrund Stöd till närstående är en grundläggande del av palliativ vård. Stödinterventioner som erbjudits i grupp in-real-life har utvärderats med positiva effekter. Det kan dock vara svårt för närstående att delta på grund av svårigheter att lämna den sjuke och formatet passar heller inte alla. Webbaserade lösningar kan möjliggöra för fler att ta del av stöd utifrån egna förutsättningar och behov. Olika alternativ finns men mer kunskap om webbaserat stöd behövs.

Syfte Att undersöka närståendes erfarenheter av stöd i samband med deltagande i en webbaserad intervention ’Närstående.se’ under pågående specialiserad hemsjukvård.

Metod Webbsidan ’Närstående.se’ är baserad på tidigare forskning och innehåller kortare filmer där vårdpersonal (autentisk) samtalar med närstående (skådespelare) om ämnen som ofta är angelägna för närstående. Filmerna kompletteras med fördjupande texter och på webbsidan finns ett modererat chattforum. Studien ingår i ett projekt med randomiserad kontrollerad design. Kvalitativa intervjuer genomfördes med 7 närstående varav 5 partners, 1 syskon och 1 dotter, mellan 46–80 år. Data analyserades med kvalitativ innehållsanalys.

Resultat Möjligheten att vid behov och i lugn och ro ta del av stöd hemifrån uppskattades. Närstående uttryckte att det genom ’Närstående.se’ kunde vara lättare att närma sig frågor om svår sjukdom och död. Användning av webbsidan gav närstående igenkänning, bekräftelse och normaliserande av svåra känslor. Att ta del av webbsidan bidrog till att svåra ämnen hamnade i fokus vilket kunde underlätta samtal inom familjen. Webbsidan hade använts i olika omfattning men vetskapen om att ha tillgång till den upplevdes som en trygghet.

Konklusion Närstående upplever att webbaserat stöd finns när de behöver det. Att närstående kan välja att ta del av specifikt stöd vid behov innebär att stödet blir personcentrerat och anpassat för deras behov.

PURPOSE: Allogeneic hematopoietic stem cell transplantation (HSCT) is an intensive curative treatment that increases family caregivers' burden. The aim of this study was to explore the feasibility of remotely assessing and addressing family caregivers' support needs in terms of demand and acceptability using the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the HSCT context.

METHODS: CSNAT-I consists of an evidence-based tool and a five-stage person-centred process. The intervention was performed remotely by two designated nurses from two HSCT centres, one before HSCT and the second 6 weeks after (November 2020 to March 2021). To capture the experiences of using CSNAT-I, interviews were conducted with family caregivers and reflections were gathered from the designated nurses.

RESULTS: Of 34 eligible family caregivers, 27 participated, 70% were partners and the rest children, siblings or other relatives. The main support needs were knowing what to expect in the future and dealing with your feelings and worries. The most frequent support actions according to CSNAT-I were psychological support and medical information. Four categories summarised family caregivers and designated nurses' experiences: CSNAT-I was relevant and became an eye opener; nurses' experiences were important for enabling trustful CSNAT-I conversations; CSNAT-I provided family caregivers with support and a sense of security; and CSNAT-I gave family caregivers insight and enabled change.

CONCLUSION: Both family caregivers and designated nurses experienced that using CSNAT-I in an HSCT context was feasible and had the potential to provide valuable support for most of the participating family caregivers.

Barn och familjer i behov av palliativ vård är fokus för denna session. Det finns variationer i möjligheten till palliativ vård för barn i hemmet beroende på var i landet man bor och kan inkludera alltfrån interprofessionella team i barnets hem till stöd på distans via telefon och digital teknik. Du som lyssnar kommer få ta del av aktuell forskning inom området samt få vårdpersonal- och föräldrar perspektiv på fördelar och utmaningar med palliativ vård i hemmet.

Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6-14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school-a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death-not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling's palliative care needs.

Bakgrund: Antalet människor som drabbas av sjukdomar och behöver palliativ vård kommer öka världen över. Sjuksköterskor är i position för avgörande insatser riktade för både patient och närstående. Kunskap finns om stora variationer i utbildning om palliativ vård i sjuksköterskeutbildningar i Sverige medan kunskap om hur palliativ vård ingår i utbildningsplaner och hur undervisningen utformas är bristfällig.

Syfte: Att undersöka omfattning och innehåll, samt vilka pedagogiska strategier som används för utbildning om palliativ vård i sjuksköterskeprogram i Sverige. Dessutom att utforska erfarenheterna hos lärare om att undervisa om palliativ vård.

Metod: En studie med mixad design genomföres. Alla 24 universitet som ansvarar för att tillhandahålla sjuksköterskeutbildning i Sverige deltog genom en lärare med kunskap om utbildningens innehåll. Beskrivande statistik användes för att analysera kvantitativa data och innehållsanalys för kvalitativa data.

Resultat: Endast ett fåtal sjuksköterskeprogram i Sverige inkluderade en specifik kurs om palliativ vård i sina utbildningsplaner. Lärare upplevde sig tvungna att konkurrera med andra områden inom utbildningen för att undervisa om palliativ vård. Utbildningen som gavs om palliativ vård var främst teoretisk och lärare använde olika pedagogiska strategier och den egna yrkesmässiga och personliga erfarenheter för att stödja studenterna att förstå palliativ vård. Vissa områden, som döende och död var svåra ämnen att lära ut.

Betydelse: Utbildning om palliativ vård är viktig för att klara kommande behov. Studien visar att lärare ofta strävar på egen hand för att utveckla studenters förståelse genom olika undervisningsstrategier och måste också konkurrera med andra områden inom utbildningen. Kartläggningen kan vara ett stöd för enskilda lärare och lärosäten för att möjliggöra utbildning om palliativ vård. Utbildning om palliativ vård måste prioriteras inte bara av enskilda lärosäten utan också på nationell nivå.

När barnfamiljer drabbas av svår sjukdom uppstår det stora utmaningar för alla i familjen. Vid Marie Cederschiöld högskola pågår forskning om stöd till dessa familjer. En intervention som involverar alla familjemedlemmar är stödprogrammet the Family Talk Intervention. Den utvärderas och implementeras inom specialiserad palliativ hemsjukvård och cancervård där en förälder är sjuk, men också inom pediatrisk vård och barnhospice där ett barn har palliativa vårdbehov.

Barnfamiljer som lever med svår sjukdom står inför många utmaningar. Trots detta finns få vetenskapligt utvärderade stödprogram för dessa familjer. Denna föreläsning berör stödprogrammet "the Family TalkIntervention" (FTI), som ursprungligen kommer från psykiatrin, men som pilot-testats inom somatisk vård. Målet med FTI är att främja sjukdomsrelaterad kommunikation inom familjen (t ex prognos), öka kunskap omsjukdomen, samt att stödja föräldraskapet. Pilotstudien inom specialiserad palliativ hemsjukvård (när en förälder är sjuk) samt pediatrisk onkologi (när ett barn är sjukt) visade att FTI var genomförbar och att stödet familjen fått resulterade i att familjen funnit fungerande sätt att prata i familjen om det som är svårt. Det positiva utfallet har resulterat i att FTI nu implementeras på ett universitetssjukhus i Sverige där anställda hälso- och sjukvårdskuratorer utbildas. Parallellt genomförs en fullskalig studie inom specialiserad palliativ hemsjukvård. Förhoppningen är att FTI ska kunna utgöra ett nytt arbetssätt för att stödja barnfamiljer med svår sjukdom.

Att samtala om det som är svårt, exempelvis prognos, är utmanande för både barn, familj och vårdpersonal. Trots denna utmaning är det viktigt att hitta former för detta så att familjen får möjlighet att välja hur de vill leva sitt liv.

Vårdprogram, journalsystem och arbetsrutiner bör ändras för att öka säkerheten för kvinnor med skyddade personuppgifter. 

Acute lymphoblastic leukaemia (ALL) has a high survival rate, but treatment is lengthy with risk of severe side-effects, which may also impact parents' health-related quality of life (HRQOL). We present data on 526 parents of 310 children treated for ALL according to the NOPHO ALL2008-protocol, in Sweden, Finland and Denmark. Parents were asked to complete the 36-Item Short Form Survey (SF-36) at least 6 months after end of treatment and data were compared with Norwegian reference data. Parental background factors were collected via a study-specific questionnaire. Participating parents scored significantly lower than the reference population on both physical and mental summary indexes, but only surpassed a minimal clinically important difference for the mental summary index (Mental Component Summary [MCS]). Mothers scored lower than fathers in the MCS and stopped working and took care of the affected child more often than the fathers. Higher mental HRQOL was associated with male gender and living in Finland or Denmark (compared to Sweden). Correlations within spouses in physical and mental scores were weak to moderate. In conclusion, ALL negatively affects parental HRQOL, especially the mental domains, even after treatment. Findings suggest that mothers are more affected than fathers and may require extra support.

Intensive Care Unit (ICU) nurses prescribe medication for patients in many countries. However, there is still no evidence on the legitimacy of nurse prescribing roles in the healthcare system of Iran. This qualitative study with 30 experts was conducted to explore the experiences regarding the expanding role of prescribing medication by the ICU nurses. Data were collected through 31 individual semi-structured interviews and analyzed using the conventional content analysis method by MAXQDA 10. One major theme, "applicability of prescribing medication by ICU nurses", together with three sub-themes of "facilitators", "potential risks of nurse prescribing" and "the professional pathway", emerged. The use of successful global experiences, patient-oriented healthcare system policies, current culture and positive professional position of nurses, physician shortage, and high capacity of ICU nurses appeared as facilitators to perform the new role in our context. For the expansion of the new role, different professional pathways such as discussion with physicians and special groups with conflicts of interests, training qualified nurses in this area, and gradual development were proposed by the participants. The next step of the research is to prepare a set of standards for the prescription of medication by the ICU nurses in our context.

Family caregivers are crucial providers of support and care for patients with lifethreatening illness and many report unmet support needs. With the use of quantitative and qualitative methods this thesis aimed to evaluate the Carer Support Needs Assessment Tool (CSNAT) and explore experiences and potential effects of utilising the Carer Support Needs Assessment Tool Intervention (CSNAT-I) among family caregivers and registered nurses in the context of specialised home care. The results showed that the CSNAT tool was valid and reliable for use among family caregivers in specialised home care (I). Family caregivers reported most the need for additional support concerning “Knowing what to expect in the future” (I, II). They reported and described how higher levels of need for more support were associated with poorer quality of life (II). The intervention was effective in significantly increasing family caregivers’ preparedness for caregiving (p = 0.002) (IV). Participating nurses expressed that their everyday clinical practice changed while learning to use the CSNAT-I and they experienced professional and personal growth (III). Their assessments and supportive inputs shifted from reactive towards proactive and more in collaboration with family caregivers. When utilizing the CSNAT-I, family caregivers experienced their conversations with nurses as co-created, providing new perspectives and insights which increased their involvement and helped in finding solutions (V).

In conclusion, this thesis gives further weight to the importance of addressing family caregivers' support needs as a part of nursing.

Bakgrund: Närstående är betydelsefulla för patienter som vårdas i hemmet vid livets slut och tar ofta ett stort ansvar. De ger ofta den sjuke både socialt och existentiellt stöd samtidigt som de ibland utför omfattande vård. I sin nya vårdande roll riskerar närstående sin egen hälsa och välbefinnande. Kontinuerligt och anpassat stöd för den närstående kan göra det möjligt för närstående att på bästa sätt stödja patienten men även att upprätthålla sin egen hälsa och välbefinnande.

Syfte: Att undersöka sjuksköterskors förväntningar och farhågor inför att prova en personcentrerad intervention för närstående i specialiserad palliativ hemsjukvård.

Metod: CSNAT-I testas vid sex specialiserade hemsjukvårdsenheter i Sverige. CSNAT interventionen består av 1) ett formulär med 15 frågor om behov av stöd strukturerat kring 15 områden inom praktiska, emotionella, existentiella och sociala aspekter och 2) en personcentrerad process som utifrån fem steg guidar bedömning och beslut om stödinsatser utifrån närståendes egna reflektioner och prioriteringar. Intervjuer har genomförts med 11 sjuksköterskor. För analys används tolkande beskrivning.

Resultat: Resultat från de hittills 11 genomförda intervjuerna visar att sjuksköterskorna saknar ett strukturerat arbetssätt som gör det möjligt identifiera närståendes individuella stödbehov under hela patientens vårdtid. Förhoppningar framkom om att CSNAT-I ska ge plats för närståendesamtal i det dagliga arbetet, ge guidning i samtalet så att så att alla närstående har samma möjlighet till stöd utifrån sina egna behov vilket de hoppades skulle göra stödet mer effektivt. Farhågor uttrycktes om att de föreställde sig att samtalen skulle kunna ta mycket tid i deras dagliga arbete.

Betydelse: Ger en ökad kunskap om sjuksköterskors förväntningar och farhågor inför en ny intervention för att stödja närstående. Kunskapen kan hjälpa till i utveckling och implementering av framtida interventioner.

Bakgrund: Närstående uttrycker ofta att de saknar tillräcklig kunskap för att vårda och ge stöd till en familjemedlem med livshotande sjukdom. Många beskriver konsekvenser som sömnlöshet, ångest, depression, trötthet, ensamhet och nedsatt hälsa vilket gör att de löper risk för en försämrad livskvalitet.

Syfte: Att undersöka associationer mellan närståendes stödbehov och livskvalitet när deras partner vårdas i specialiserad palliativ hemsjukvård.

Metod: Denna beskrivande tvärsnittsstudie, som är ett internationellt samarbete, rekryterade 114 närstående till en partner med livshotande sjukdom, från två specialiserade hemsjukvårdsenheter i Sverige. Deltagarna besvarade en enkät med validerade instrument: The Carer Support Needs Assessment Tool (CSNAT) och The Quality of Life in Life-Threatening Illness – Family caregiver version (QOLLTI-F) och 43 närstående besvarade även en öppen fråga om deras situation som närstående. Svaren analyserades med beskrivande statistik, multipla linjära regressionsanalyser och kvalitativ innehållsanalys.

Resultat: Högre nivåer av ej tillgodosedda behov av stöd hos närstående var signifikant associerat med sämre livskvalitet. Det var tydligt att alla frågor som CSNAT innehåller, dvs stödbehov utifrån praktiska, emotionella, sociala och existentiella aspekter, var associerade med livskvalitet enligt QOLLTI-F. De statistiska sambanden stärktes av att närstående i den öppna frågan beskrev hur deras liv och livskvalitet påverkades av sjukdomens konsekvenser. Närstående rapporterade mest behov av att få veta vad de kunde förvänta sig av framtiden. Sämst livskvalitet rapporterades närstående i förhållande till patientens tillstånd, och deras egen fysiska och emotionella hälsa.

Betydelse: Livskvalitet och stöd till närstående är båda viktiga begrepp för palliativ vård. Fördjupad kunskap om närståendes situation och hur deras stödbehov kan påverka livskvalitet kan skapa möjlighet för framtida interventioner som främjar närståendes livskvalitet.

Aim: To explore nurses' experiences of supporting family caregivers in specialised home care while learning to use the Carer Support Needs Assessment Tool Intervention.

Background: The Carer Support Needs Assessment Tool Intervention can provide guidance for discussions with family caregivers in specialised home care concerning their specific support needs. Little attention has been paid to how nurses experience the use of the intervention in their everyday practice.

Design: This longitudinal study adopted an inductive qualitative approach using inter-pretive description.

Methods: Interviews were conducted at two time points. A total of 22 interviews took place with 12 nurses recruited from six specialised home care services. Data were analysed using interpretive description.

Results: Nurses' everyday clinical practice changed while learning to use the Carer Support Needs Assessment Tool Intervention, and they experienced professional and personal growth. Their supportive inputs shifted from being reactive towards being more proactive. Their approach changed from taking on great professional responsi-bility, towards a shared responsibility with family caregivers. The support altered from ad hoc contacts in the hallway, towards scheduled trustful conversations. Nurses were concerned about the amount of time and energy this kind of support might require. They pointed to the importance of holding good nursing skills to conduct this new way of having conversations.

Conclusion: Nurses' everyday clinical practice can be further developed through the use of the Carer Support Needs Assessment Tool Intervention. Nurses may develop both professionally and personally, increasing their ability to provide person-centred support.

Relevance to Clinical Practice: With the use of the Carer Support Needs Assessment Tool Intervention, nurses can create trusting conversations with family caregivers of patients with life-threatening illnesses cared for in specialised home care.

Reporting Method: Reporting of the study follows the Consolidated Criteria For Reporting Qualitative Research (COREQ) checklist (File S1).

Patient or Public Contribution: Participating nurses were involved in discussing the study design.

Purpose The Carer Support Needs Assessment Tool Intervention (CSNAT-I) was designed to help family caregivers identify, reflect upon, and express their support needs in a conversation with a health care professional and gain tailored support. The CSNAT-I has shown positive effects for both nurses and family caregivers but for more comprehensive understanding this study aims to examine family caregivers' experiences of discussing their needs with a nurse during specialised home care, utilizing the CSNAT-I.

Methods The study used an inductive qualitative descriptive design based on framework analysis. Data was collected using individual semi-structured telephone interviews with 10 family caregivers, with a median age of 66, from four specialised home care services.

Results Family caregivers appreciated having scheduled meetings with nurses utilizing the CSNAT-I which gave them an opportunity to focus on what was important to them. Family caregivers experienced that the conversations were co-created with a flexible dialogue. The conversations provided new perspectives and insights which helped in finding possible solutions. Family caregivers felt empowered by the co-created conversation and took on a more active role in involving the rest of their family to find support to themselves and the patients.

Conclusion The CSNAT-I can facilitate communication between family caregivers and nurses leading to adequate supportive inputs. The intervention gives family caregivers an increased opportunity to be involved in their own support, which may enhance their sense of security. According to family caregivers’ experiences, CSNAT-I may be an adequate way to support family caregivers to reflect and discuss their needs.

OBJECTIVES: Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care.

METHODS: The study had a pre-post intervention design and was conducted at 6 specialized home care services in Sweden. Family caregivers who received the intervention completed a questionnaire, including the Preparedness for caregiving scale, Caregiver Burden Scale, and Quality of Life in Life-Threatening Illness - Family carer version, at 2 time points, baseline and follow up, about 5 weeks later. Data were analyzed using descriptive statistics and Wilcoxon signed-rank test.

RESULTS: Altogether, 33 family caregivers completed the baseline and follow-up assessment. A majority were retired (n = 26, 81%) and women (n = 19, 58%) and two-fifths had a university degree (n = 13, 41%). The family caregivers had significantly increased their preparedness for caregiving between the baseline and follow-up assessment (Mdn = 18 vs. 20, p = 0.002). No significant changes were found on caregiver burden or quality of life.

SIGNIFICANCE OF RESULTS: The results add to knowledge regarding the Carer Support Needs Assessment Tool Intervention's potential to improve family caregiver outcomes. Findings suggest that the intervention may be used to improve the preparedness for caregiving and support among family caregivers in specialized home care.

Aims  and  Objectives: To explore the longitudinal experiences using an application named remote home care for remote palliative care among patients with cancer living at home.

Background: Introducing welfare technology in home- based care for patients with cancer in the palliative phase is internationally suggested as a measure to remotely support palliative care needs. However, little is known about the experiences of patients utilising welfare technology applications to receive home-based care from healthcare professionals in a community care context. Although living with cancer in the palliative phase often presents rapidly changing ailments, emotions and chal-lenges with patients' needs changing accordingly, no studies exploring the longitudinal experiences of patients were found.

Design: A qualitative study with a longitudinal, exploratory design.

Methods: Data were collected through individual interviews with 11 patients over 16 weeks. The data were analysed using qualitative content analysis. The COREQ checklist guided the reporting of the study.

Results: Three themes were identified: (1) potential to facilitate self- governance of life-limiting illness in daily life, (2) need for interpersonal relationships and connections, and (3) experiences of increased responsibility and unclear utility of the Remote Home Care.

Conclusion: The results showed that remote home care facilitated patients' daily routines, symptom control and improved illness- management at home. Interpersonal relationships with healthcare professionals were considered pivotal for satisfactory follow-up. Infrastructural glitches regarding data access, information sharing and lack of continuous adjustments of the application represented major challenges, with the potential to impose a burden on patients with cancer in the palliative phase.

Relevance to Clinical Practice: By exploring the experiences of patients in palliative care over time as the disease progresses, this study provides constructive insights for the design and development of welfare technology applications and optimal care strategies.

Patient or Public Contribution: The remote home care was developed by interdisciplinary healthcare professionals.

Background Research shows that undocumented migrants have difficulties in accessing healthcare. Act 2013:407 came into force in 2013 and entitled undocumented migrants to healthcare that cannot be deferred. To date, studies about undocumented migrants’ access to care in Sweden and the impact of Act 2013:407 are sparse. Hence, the aim of this study was to describe professionals’ experiences of access to healthcare for undocumented migrants in Sweden and the impact of Act 2013:407.

Methods A qualitative design with semi-structured interviews was employed. Nine interviews were carried out in 2015 with nurses at two NGO healthcare centres for undocumented migrants – and an additional seven interviews in 2022 with staff at an NGO healthcare centre for undocumented migrants and personnel at a regional health and medical care administration. Interpretive description was used for the analyses.

Ethical considerations Permission to carry out the study was obtained from managers at the participating NGOs and the regional health and medical care administration. Participants received verbal and written information about the study, and informed consent was obtained from all participants.

Findings Six categories emerged from the analysis: Changes since the Act was introduced, General problems with healthcare access, Care for undocumented migrants – politics and social economy, Lack of knowledge, ‘Healthcare that cannot be deferred’ and Being an undocumented migrant.

Conclusion Undocumented migrants’ social needs are as great as their needs for healthcare. Healthcare staff are burdened with healthcare cost considerations which affect their judgement of care provision and prioritization. Healthcare staff attitudes towards undocumented migrants affect their access to healthcare. Undocumented migrants in need of healthcare are especially vulnerable due to their legal status, being ill and the fear of being reported and deported. To assure undocumented migrants’ access to healthcare and maintain healthcare ethics, the only possible solution is to provide healthcare based on needs.

Bakgrund: Integritet är ett viktigt etiskt värde i vården och ska främjas enligt Hälso- och sjukvårdslagen och Patientlagen. Men en entydig definition om vad integritet är saknas. Syftet med denna studie var att undersöka hur sjuksköterskor ser på integritet och på deras roll i att främja respekt för integritet när patienter i livets slutskede vårdas inom intensivvård.

Syfte: Att undersöka hur sjuksköterskor ser på integritet och på deras roll i att främja respekt för integritet när patienter i livets slutskede vårdas inom intensivvården.

Metod: En kvalitativ beskrivande design. Individuella semi-strukturerade intervjuer genomfördes med 16 specialistsjuksköterskor inom intensivvård.

Resultat: Trots att integritet är ett centralt etiskt begrepp och ett kärnvärde i vården så var begreppet svårfångat för sjuksköterskorna. Sjuksköterskorna menade att patienternas integritet riskerade att suddas ut på grund av patienternas allvarliga tillstånd, deras totala beroende av vårdpersonalen och miljön inom intensivvården. Respekten för patientens integritet framkom som ett centralt tema där en förutsättning var att sjuksköterskorna själva hade integritet. Temat byggdes upp av de fem kategorierna: Se den unika människan, Känslig för patientens sårbarhet, Observant på patientens fysiska och psykiska sfär, Lyhörd för patientens kultur och religion samt Respektfull i möten med patienten.

Betydelse: Studien bidrar med kunskap om att sjuksköterskor anser integritet vara ett viktigt värde i vården, hur begreppet integritet förstås samt hur vården utförs på ett respektfullt sätt som främjar integriteten. Studien visar att sjuksköterskor inom intensivvård behöver få möjlighet att regelbundet diskutera etiska utmaningar och värderingar.

Sorg är en naturlig del av livet, för att vi människor är sociala och knyter relationer igenom hela livet. Att bearbeta förlusten när en älskad person dör kräver ett sorgearbete, många klarar det på egen hand med stöd i sitt sociala nätverk. Sorg som är ihållande och behöver behandling, brukar benämnas komplicerad sorg. Presentationen på denna konferens kommer att fokusera på mötet med människor med komplicerad sorg, samt faktorer som kan ge en djupare förståelse av fenomenet.

BACKGROUND: Coronary artery disease (CAD) is among the most common causes of death in almost all countries across the world. Awareness of risk factors for the management and prevention of the disease can reduce complications and mortality rates. This study was conducted with the aim to investigate the mortality and potential risk factors of myocardial infarction (MI) as well as their relationships in patients who were admitted to one university hospital in the North of Iran from 2014 to 2018.

METHODS: This study had retrospective descriptive design. Using a checklist, all necessary information was extracted from 5-year medical records data of MI patients in the university hospital from 2014 to 2018 (n = 564). The data analysis was performed in SPSS software using descriptive statistics and two binary logistic regression analyses.

RESULTS: The results showed that the mean age of the patients was 62.78 +/- 13.38 years, and most of them were men (66.3%). The patients' mortality was 18.6% in a 5-year analysis. However, the number of mortalities was higher in the women (P = 0.001). Descriptive analysis showed that the most common risk factors of the disease in both genders were hypertension (46.6%), diabetes mellitus (DM) (38.5%), hyperlipidemia (24.1%), smoking (20%), and family history of CVDs (18.8%), respectively. However, the results of the adjusted regression model showed that the odds ratio (OR) of the patients' mortality increased in diabetic MI patients (OR: 2.33; 95%CI: 1.42-3.81; P = 0.001), but this ratio decreased in MI patients with a history of hyperlipidemia (OR: 0.23; 95%CI: 0.11-0.44; P < 0.001).

CONCLUSION: Based on the results, individual- and population-based prevention strategies by focusing on hypertension and diabetes are recommended in our health programs. Surprisingly, the mortality rate of MI patients was lower among those with a history of hyperlipidemia. There are different hypotheses for the cause of this. Therefore, laboratory studies with animal models and prospective cohorts are suggested for future studies.

OBJECTIVE: Signs and symptoms are important in monitoring prostate cancer, but there is a lack of understanding about the men's interpretation of signs and symptoms in relation to disease progression in advanced phases of the disease. The aim was to illuminate the experience of signs and symptoms in relation to disease progression in men with metastatic castration-resistant prostate cancer (mCRPC).

METHOD: Thirty longitudinal interviews were conducted with 11 men undergoing life-prolonging treatment for mCRPC. Conventional content analysis was used.

RESULTS: The results illuminate an uncertainty that the men experience when interpreting signs and symptoms. The overarching theme was The experience of an uncertain illness situation within the framework of progression, with four subthemes: Symptoms triggering thoughts about disease progression; Making sense of signs, also in the absence of symptoms; Making sense of symptoms during treatment; Progression triggering thoughts about the remainder of life.

CONCLUSION: In the uncertain illness situation, the men strive to make sense of signs and symptoms based on previous experiences and in relation to disease progression. Understanding the men's perspectives on signs and symptoms in this late phase may help health care professionals communicate about disease progression considering the balance between treatment outcome and quality of life.