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.

Background: Childhood cancer impacts the family system and has psychosocial consequences for all family members. For the parents, the ill child, and the siblings to be able to adjust to this challenging situation, the whole family needs access to psychosocial support. However, only a few such family interventions in pediatric oncology have been evaluated. The aim of this study was to explore the potential effects of a family-centered intervention, the Family Talk Intervention (FTI), in pediatric oncology from the parents’ perspectives.

Methods: A concurrent mixed methods design was used for this study. Data were derived from a pilot study of 26 families recruited from one pediatric oncology center in Sweden. This study focused on questionnaire and interview data from 52 parents.

Results: After participation in FTI, the parents felt more satisfied with the conversations within the family about the illness. FTI also contributed to strengthened family togetherness, including more open communication and improved family relations, as described by the parents. Parents further expressed that they felt more empowered in their parenting role following FTI.

Conclusions: The findings regarding FTI’s ability to improve family communication and family relations, thus strengthening family togetherness in families with childhood cancer, are promising. This provides motivation for a large-scale study of FTIs in pediatric oncology.

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/Aim Family caregivers and patients in palliative care are often mutually dependent, supporting each other through the impact of serious illness. The possibility to cope as a couple is of particular importance for family caregivers when providing care at home. A psycho-educational website was developed to support family caregivers in this situation. In short videos healthcare professionals and family caregivers (actors) interact, discussing issues known to be of importance for family caregivers, for example illness-related communication and planning for the future. This study aimed to explore influences of web-based support on experiences of mutual support between family caregivers and patients with life-threatening illness.

Methods This study was part of a randomised controlled trial and used a qualitative approach. In total, 8 couples were interviewed, one family caregiver and one patient together in each interview (age 46–85). Data were analysed using interpretive description.

Results Both family caregivers and patients appreciated the opportunity for family caregivers to have their own private platform of support. For each of them personally, and as a couple, it was relieving that also family caregivers’ needs gained attention and were put into focus. Family caregivers expressed feelings of normalisation as their own thoughts were addressed in the videos. Recognising the situations described in the videos was empowering, helping to cope with their own stress and strain, as well as facing the patient’s similar feelings. This facilitated their everyday life as a couple supporting each other in illness. Couples described themselves as being a team.

Conclusions This website, supporting family caregivers, influenced family caregivers’ and patients’ mutual life by enhancing understanding of the shared situation and how to approach it. Although only family caregivers did access the website, it was beneficial for both of them in their everyday life.

Background/Aims Even though in person supportive group interventions for family caregivers have been effective they can also be challenging to implement. Web-based support could be an alternative and hence we developed a website focused on a psycho-education for family caregivers. In short videos healthcare professionals and family caregivers (actors) interact, discussing issues known to be of importance for family caregivers. Informative texts and a moderated chat forum are also included. This study aimed to explore family caregivers’ experiences of the website while caring for a patient with life-threatening illness at home.

Methods The present study was a part of a randomised controlled trial and used a qualitative approach. Interviews were performed with 16 family caregivers (age 42–85); 12 partners, 2 adult children, 1 parent, and 1 sibling. Data were analysed using qualitative content analysis.

Results Family caregivers appreciated the flexibility and possibility to access the website at a time and place of their own convenience when ready to do so. Having access to the website was perceived as reassuring because caregivers knew they could access support when needed throughout the illness progression. Using the website made it easier to approach and reflect upon issues related to incurable illness and death, it also facilitated addressing such issues with the patient. The videos contributed to a sense of recognition and comfort when the family caregivers’ own thoughts, concerns, and feelings were described by others. This was important to gain new insights on difficulties and challenges in their role as caregivers. Family caregivers hesitated to use the chat forum even though they wanted to. They expressed waiting for others to initiate a conversation.

Conclusions Psycho-education content via a website allowed family caregivers to decide what support they wanted depending on needs, time, and situation. Future research should focus on evaluating effects of web-based support through experimental designs.

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.

I den här sessionen presenterar vi akademisk SÄBO ur olika perspektiv. Vi kommer att berätta om: (x) samskapande, utveckling och uppbyggnad av akademisk SÄBO(x) att vara kommundoktorand och vägen dit. Vi kommer även att berätta om (x) att vara forskare på SÄBO och om (x) samverkan mellan forskning, utveckling och utbildning. I sessionen knyter vi an till palliativ vård genom våra olika exempel. Bland annat kommer vi att beskriva SÄBO som arena för utveckling, följeforskning och deltagarbaserad forskning.samt SÄBO som arena för strukturerade förbättringsarbeten och ett doktorandprojekt om förberedande samtal om livet och döden på SÄBO tillsammans med personal och chefer på SÄBO i Stockholm

Interviews with individuals experiencing homelessness can be challenging for various reasons, including mental and physical health issues, substance use, and negative experiences with authority figures. Researchers have used photos to facilitate communication and empower participants during data collection. We analyzed data from a previous study to explore the use of researcher-generated photos during interviews about health with 13 women experiencing homelessness. Conversation analysis revealed clear patterns regarding the use of the photos during the interviews. The photos were referred to 118 times over the total interview length, 6 hours and 23 minutes, with the interviewer making 62% of the referrals and the women accounting for 38%. Fifty-nine percent of the referrals occurred within the first 5 minutes of the interviews. The women used the photos to trigger associations and emotions, to describe photo content, or in a minor role during the interview. Interpretations from an advisory board of six women with lived experiences of homelessness suggested that the photos did not engage participants as intended, highlighting the importance of considering participants’ perspectives when designing photo-elicitation methods. The feedback also provided valuable insights into interview locations and incentives in research that may have influenced the women’s willingness to use the photos. This study emphasizes the importance of understanding the complexity of choosing researcher-generated photos in interviews with underserved, hard-to-reach populations.

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.

Background Despite the challenges that caring for a child with cancer brings for parents, little knowledge is available concerning the effects on the parents’ couple relationship. Furthermore, few interventions have been designed to support parents in their couple relationship. The aim of this paper was, therefore, to explore parents’ experiences of their couple relationship while having a dependent child with cancer and the support they received from a family-based intervention, the Family Talk Intervention (FTI).

Methods Data for this paper were taken from semi-structured interviews performed in a pilot study of the FTI in the context of pediatric oncology. In total, 22 couples were interviewed after participating in the FTI. The interviews were transcribed and analyzed using qualitative content analysis.

Results Parents described how maintaining a couple relationship while living with childhood cancer could be very challenging and was not given the highest priority. The FTI was considered a way of providing important support to the couple and a chance for them to sit down together and listen to each other's perspectives on the situation. Parents described that the FTI had helped them gain an increased mutual understanding, sometimes also helping them to realize that they needed more extensive professional support in their relationship.

Conclusions Living with childhood cancer and upholding a healthy couple relationship is challenging for parents. The FTI has the potential to support couples, mainly by providing opportunities for parents to communicate with each other. However, some couples may be in need of a tailored clinical intervention.

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.

PURPOSE

The aim of this study was to explore patients' experiences of being prepared for allogenic haematopoietic cell transplantation and to explore their perceived self-efficacy and preparedness for self-care after allogenic haematopoietic cell transplantation.

METHODS

Nine participants, who recently underwent allo-HCT, were interviewed regarding their views on preparedness, self-efficacy and self-care. The interviews were analysed using inductive qualitative content analysis.

RESULTS

An overarching theme, Life is taken apart, then you have to know how to put the pieces together, and four sub-themes: Convert information into something understandable; Taking responsibility, maintaining and preparing for an uncertain time in life; Balancing vigilance with independence; and Reorientating in an altered body places new demands on self-care illustrate the dismantlement of life during treatment and how actions and approaches can build a new life.

CONCLUSIONS

Both participants and healthcare professionals prioritised preparing for allo-HCT in the period before admission. However, during admission, preparation decreased and the time was not used for preparatory learning. This meant that participants were well prepared for the acute phase but unprepared for life after completion of treatment. Among the participants, self-efficacy was good. They sought information about taking care of their health before and in the aftermath of allo-HCT.

IMPLICATIONS FOR CANCER SURVIVORS

This study provides insight into, and knowledge about, how patients prepare before, during and after treatment. This knowledge should primarily be directed towards healthcare professionals to be used for future patients who may need advice and support, as well as continued preparation for a life after transplantation.

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.

The purpose of this study was to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer and (2) explore modifiable preparedness factors, such as communication and support. Data was derived from a baseline questionnaire collected in specialized home care. The questionnaire included socio-demographics, the Preparedness for Caregiving Scale, and single items addressing preparedness for death, received support and communication about incurable illness. Data was analyzed using descriptive statistics and Spearman correlations. Altogether 39 family caregivers participated. A significant association was found between preparedness for caregiving and preparedness for death. Received support and communication about the illness was associated with higher levels of preparedness for caregiving and death. This study contributes to evidence on the association between preparedness for caregiving and death, but also that communication and support employed by healthcare professionals could improve family caregiver preparedness and wellbeing. 

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.

Aim: To explore registered nurses' experiences with pain management in patients with opioid use disorder (OUD) in home care.

Design: Qualitative explorative-descriptive design.

Methods: Data were collected via nine individual semi-structured interviews with registered nurses working in home care meeting patients with OUD. Data were analysed using systematic text condensation.

Results: Three categories were identified: Reciprocity in relationships and a professional approach enhance pain management; Discrepancies between guidelines, patient-reported pain and RNs' observations challenge pain management; and Interprofessional collaboration makes or breaks pain management.

Low health literacy (HL) has been linked to low self-rated health, reduced efficacy of behaviour change, and challenges in preventing, treating, or managing health conditions. People experiencing homelessness are at risk of poor HL; however, few studies have investigated HL in relation to mental and spiritual well-being among people experiencing homelessness in general, or women experiencing homelessness specifically. This cross-sectional study of 46 women experiencing homelessness in Stockholm, Sweden, recruited during the period October 2019–December 2020, aimed to examine how HL was associated with mental and spiritual well-being among women experiencing homelessness. Participants answered questions about socio-demographic characteristics (age, length of homelessness, education) and digital technology (mobile phone/the Internet) use, in addition to Swedish language versions of three questionnaires administered through structured, face-to-face interviews: the Communicative and Critical Health Literacy Scale, the General Health Questionnaire 12 and the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being. Data were analysed using linear regression, which revealed statistically significant associations between HL and mental well-being (p = .009), and between HL and spiritual well-being (p = .022). However, neither socio-demographic characteristics nor digital technology use were significantly associated with HL. In conclusion, promoting HL may improve mental and spiritual well-being in this vulnerable population. An advisory board of women with lived experiences of homelessness (n = 5) supported the interpretation of the findings and emphasised the need to consider HL in relation to basic needs such as ‘housing first’. Moreover, health information and services should be accessible to people with different degrees of HL.

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.

Given the fact that women in homelessness face considerable health inequities, the question of how digitalization can be understood in relation to social rights and right to health surfaces. The objective of this qualitative interview study was to explore the use of mobile phones and internet for women experiencing homelessness. Women (n = 26) shared experiences of healthcare access by using a mobile phone or internet. Data were analyzed using NVivo software. The results are presented in two themes: Conditions and circumstances of having a mobile phone; and Structural and intrapersonal challenges affecting social rights. The results show that digitalization actively influenced everyday life for women experiencing homelessness. Whether women wanted it to or not, digitalization presents a line of demarcation for participation and inclusion or exclusion, in health- and social-care services.

Fatigue is one of the most distressing symptoms experienced by cancer patients. The suggested biological mechanism for cancer related fatigue (CRF) includes immune activation triggered by tumor tissue or by anticancer treatment but other mechanisms have also been proposed. Previous large meta-analysis of interventions on fatigue focuses mostly on patients early in the disease trajectory, with only one tenth of included studies performed in palliative cohorts. The aim of this narrative review is therefore to present a background on CRF with focus on the palliative setting. A summary of recent randomized, controlled trials on pharmacological interventions on CRF in palliative care is presented, including studies on psychostimulants, corticosteroids, testosterone and melatonin. Interestingly, in several of these studies there was a positive and similar effect on fatigue in both the intervention and the placebo arm—indicating an important placebo effect for any pharmacological treatment. In addition, studies on dietary supplements and on pharmacological complementary medicines are discussed. To conclude, the evidence is still weak for using pharmacological treatments on CRF in palliative care patients—although methylphenidate and corticosteroids might be considered.

Background

Performing clinical trials in palliative cancer care is known to be challenging.

Objective

This study aimed to explore how patients with advanced cancer experienced their participation in a randomised, placebo- controlled trial while receiving palliative cancer care at end of life.

Method

A descriptive design with a qualitative approach was used. 14 patients who had participated in the ‘Palliative- D’ study were interviewed. Data were analysed using content analysis.

Results

Three categories were identified understanding the study design, willingness to participate and collaboration with the research team alongside standard care. Being randomised, with the risk of receiving placebo, was perceived as non- problematic since it was understood as being important for the quality of the research. Patients showed a willingness to participate for the sake of others and also for their own sake, hoping for a cure or at least to live as long as possible. Patients felt proud of being useful and contributing to research. Consent to participate was made autonomously without discussing with others. Patients considered the study design uncomplicated and well- integrated into the standard care.

Conclusion

Study participation in a randomised, placebo- controlled trial can be a positive and meaningful experience for patients despite advanced cancer in end of life. Participation may support patients’ autonomy and give hope, and therefore, might have a positive effect on quality of life. A carefully planned and simple study design, well integrated into standard care, can facilitate the feasibility of clinical studies in specialised palliative home care.

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.

Background

Communication is central to implementing palliative care (PC) and effective interdisciplinary team functioning. Communication about existential issues is often urgent in PC, yet interdisciplinary teams frequently lack the time and education to meet these communication needs. Thus, more knowledge of existential conversations in different PC contexts is required.

Aim

This study aimed to gain an in-depth understanding of healthcare professionals’ (HCPs) experiences of existential conversations with patients with PC needs and their next-of-kin by generating a theoretical model.

Method

Seven focus-group interviews that included 26 HCPs who worked with PC patients in different care settings were carried out in 2020 and 2022. The grounded theory method was used to analyse and compare data from the interview transcripts.

Results

The HCPs’ primary concern in daily work was establishing a trusting relationship, a prerequisite for enabling existential conversations with a person with PC needs and/or their next-of-kin. The main concern was characterised by the core category maintaining presence and four categories describing interdisciplinary strategies that the HCPs used to achieve a trusting relationship and enable existential conversations in the late phase of life. Several potential barriers also hindered existential conversations. The theoretical model ‘meaningful existential conversations in PC’ was constructed.

Conclusions

The interdisciplinary strategies used to establish existential conversations, the potential barriers to these conversations and the model we present can be used as a basis for re ection in professional collaborative learning in PC, as a tool for teachers in educational PC programmes and as a guide for HCPs in PC.

The objective of this study was to estimate change over time in health-related quality of life (HRQoL) of children with spinal muscular atrophy (SMA) in Sweden. Children with SMA were identified via the National Patient Register by the National Board of Health and Welfare in Sweden. Patient HRQoL was caregiver proxy-assessed using the Pediatric Quality of Life Inventory 4.0 Generic Core Scales at baseline, as well as at 6, 12, and 18 months of follow-up. Results were stratified by SMA type. Mothers and fathers to 27 children with SMA (mean patient age: 9.17 years; 59% female) participated in the study. All patients received disease-modifying therapy. At baseline, across SMA types, the mean total score was estimated at between 52.68 and 59.19, Physical Functioning score at between 26.39 and 40.34, Emotional Functioning score at between 66.82 and 68.57, Social Functioning score at between 55.00 and 70.45, and School Functioning score at between 70.45 and 78.33. The mean annual total score change was estimated at −2.03 for SMA type I, 4.11 for SMA type II, and 1.12 for SMA type III. In conclusion, we show that SMA has a detrimental impact on HRQoL that extends above and beyond somatic disability. Children with SMA type II experienced a dramatic increase in HRQoL over time, predominantly related to improvement in physical and social functioning. Our data helps quantify the patient burden of disease and adds to the rapidly expanding body of evidence of the effectiveness of recently approved disease-modifying therapies for SMA.

This study aims to examine posttraumatic growth and its associations with parental bereavement among adolescents and young adults. Fifty-five young adults who had lost a parent to cancer at least 2 months earlier and were about to attend a support group at a palliative care service were recruited. Data was collected through questionnaires before support group participation, about 5-8 months after the loss and at a 6-month follow-up, about 14-18 months after the loss. The result shows that the young adults experienced posttraumatic growth, mostly in the domains Personal strength and Appreciation of life. Posttraumatic growth was associated with bereavement outcomes, especially life satisfaction, a feeling of meaning in future life and psychological health. The result is of value for health care professionals as it adds information about the importance of supporting constructive rumination to enhance the possibility to positive psychological change after a parent's death.

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.