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.

Background Education in palliative care for undergraduate nursing students is important for the competence of general nurses. Newly graduated nurses have reported challenges in coping with their own emotions when encountering dying persons. They express a wish for more education before they graduate, particularly in psychosocial and existential areas, such as having difficult conversations and supporting grieving persons. Despite awareness of the importance of palliative care education for nurses, there is a lack of knowledge on how to effectively convey this knowledge to students. The aim of the present study was to explore how teaching to prepare undergraduate nursing students for palliative care practice is conducted in Sweden.

Methods Educators from 22 Bachelor of Science nursing programmes in Sweden were interviewed about how they conducted palliative care education, with a focus on teaching situations that have been successful or less successful. The interviews were transcribed and analysed using qualitative inductive content analysis.

Results Educators described that they play a crucial role in preparing undergraduate nursing students to face death and dying and to care for persons at the end of life. In the main theme, “Transforming person-centred palliative care into student-centred education”, educators described how they incorporated the person-centred palliative approach into their teaching. Educators used a dynamic style of teaching where they let the students’ stories form the basis in a co-constructed learning process. The educators trusted the students to be active partners in their own learning but at the same time they were prepared to use their expert knowledge and guide the students when necessary. Discussion and reflection in small groups was described as being essential for the students to achieve a deeper understanding of palliative care and to process personal emotions related to encountering dying and grieving individuals.

Conclusions This study suggests that palliative care education for undergraduate nursing students benefits from teaching in smaller groups with room for discussion and reflection. Furthermore, gains are described relating to educators taking the role of facilitators rather than traditional lecturers, being flexible and ready to address students’ emotions. Educators also draw on their experiences as palliative care nurses in their teaching practices.

En avslutad cancerbehandling innebär inte automatiskt ett avslut på de utmaningar som följer med cancer. Behovet av cancerrehabilitering ökar i takt med fler som överlever cancer. Det råder viss otydlighet kring vilka rehabiliteringsinsatser som efterfrågas och vilka aktörer som erbjuder dessa. Denna studie har genom en litteraturöversikt satt ljuset på deltagares erfarenheter av cancerrehabilitering samt civilsamhällets roll i rehabilitering efter genomgången cancer i de nordiska länderna. Resultatet av litteraturöversikten visar att få studier finns publicerade om civilsamhällets roll i cancerrehabilitering. Personer som har genomgått en cancersjukdom har ofta behov av stöd under sin rehabilitering, där stöd från personer i liknande situation uppskattas av många. Resultatet visar även att organisationer i civilsamhället spelar en betydande roll. Studien har genomförts vid Centrum för civilsamhällesforskning, Marie Cederschiöld Högskola.

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. 

Being a parent of a child with spinal muscular atrophy (SMA), a disease that causes progressive muscle weakness, involves a range of challenges. The purpose of this study was to explore what advice parents of children with severe SMA, in absence of effective therapies, would like to give to other parents. The study derives from two nationwide parental surveys in Sweden and Denmark where content analysis was used to analyse one open-ended question about parents’ advice to other parents. Of eligible parents, n=113, (parents of children diagnosed with SMA type 1 or 2, for whom respiratory support was considered during first year of life), 95 participated in the study (response-rate: 84%), and 81 gave written advice. The advice covered coping with everyday life with the ill child, involvement in care of the child, and existential issues of living with and losing a child with SMA. Parents highlighted leading normal lives insofar as possible, e.g., by trying to see the healthy aspects in the child, not only focusing on care and treatment. The advice can be related to resilience strategies for parents with a child with severe SMA which can help healthcare professionals and others to support parents in similar situations.

Under covid-19-pandemin, skedde stora förändringar i svenska samhället, förändringar som även påverkade de patientorganisationer som företräder personer med extra utsatt risk vid smitta. Patientorganisationer har en roll i utformningen av svensk sjukvårdspolitik, utöver att även fungera som en servicefunktion för sina medlemmar. Det har dock diskuterats vilken förmåga patientorganisationerna har att anpassa sig efter förändringar i samhället. Den akuta inledande fasen av covid-19-pandemin har studerats i denna studie och hur pandemin påverkat patientorganisationers relation till medlemmar, andra aktörer och stat. Ledande representanter för fem patientorganisationer som företräder personer i riskgrupp för covid-19 intervjuades. Studien visar att patientorganisationer var snabba med att göra omstruktureringar i organisationen för att möta nya akuta behov. Bland annat skapades nya aktiviteter för medlemmar, stadgar ändrades och samarbetskanaler med andra organisationer intensifierades för politisk påverkan.

During the COVID-19 pandemic major changes took place in Swedish society, changes that also affected patient organizations representing people with increased risk of severe illness of COVID-19. This study focuses on the initial phase of the COVID-19 pandemic and how patient organizations’ relationships with their members and other actors were affected. The study shows that patient organizations were fast to make the necessary organisational reforms and thus able to meet new urgent needs.

Purpose: This study aims to explore negotiations of hope in everyday life for families where a child with spinal muscular atrophy (SMA) has received a new drug treatment.

Methods: A narrative design was used, drawing on interviews and participant observations in two families with children with SMA, types 1–2, to situate family experiences of hope in everyday life. Narrative analysis was used on the data.

Results: Results are presented as stories, with details about situations and contexts, to illustrate how hope was used by families to reconstruct their own family narratives.

Conclusions: Hope was negotiated and struggled with in different ways by different family members, but contributed to each person’s own way of dealing with the disease and outlook for the future.

Ömsesidiga hjälporganisationer i det svenska civilsamhället står för ett omfattande socialt stöd samt påverkansarbete till förmån för sina medlemmar. Som en följd av Folkhälsomyndighetens rekommendationer i samband med covid-19 pandemin, om social distansering för att förebygga smittspridning och att skydda personer i riskgrupper, har dessa organisationer behövt ändra sitt arbetssätt drastiskt. Syftet med denna studie var att studera hur ömsesidiga hjälporganisationer fungerade under covid-19 pandemin och spegla resultatet utifrån begreppet resiliens. Digitala intervjuer med nio representanter för ömsesidiga hjälporganisationer utfördes. Resultatet visar att det trots ändrade förutsättningar, fanns ett fortsatt stort engagemang och en vilja att fortsätta hjälpa och stödja sina medlemmar. Organisationerna visade kreativ problemlösningsförmåga och lyckades inom kort tid anpassa sina kontakter med medlemmarna till digitala alternativ eller andra innovativa lösningar. Resultatet diskuteras utifrån begreppet resiliens, och dess betydelse på både individ- och samhällsnivå.

Mutual aid organizations in Sweden provide extensive social support and advocacy work. Restrictions and guidelines to limit the spread of COVID-19 have forced to these organizations adapting their ways of working significantly. We conducted remote interviews with representatives of nine such organizations. The results indicate that they largely have been able to continue to support their members, despite the changed conditions, creatively adjusting their activities using new solutions. In this paper, the results are discussed using resilience as a key concept, including its significance at both an individual and a societal level.

This thesis focuses on children with severe spinal muscular atrophy (SMA) and their families. Although the disease is severe, and the families are faced with challenges in everyday life related to the progressive muscle weakness that SMA causes, knowledge of their experiences of the situation is limited. The overall purpose of this thesis was therefore to explore how families, with a child who has SMA, experience the care received and their everyday life.The thesis encompasses two projects: a two-nationwide survey with 95 bereaved and non-bereaved parents (response rate of 84%) and an ethnographical study with two families (17 interviews and participant observations at six occasions).The findings showed that parents were generally pleased with the care their children received. However, there were some shortcomings, especially that staff lacked knowledge about the diagnosis, leading the parents to feel that they themselves had to take initiatives for measurements and treatments (Paper II).Further, the parents reported deficiencies in coordination between care providers (Papers I–II). The parents emphasised the importance of having a good relationship with staff (Paper II), to find ways to cope with everyday life and get practical support in everyday activities, as well as social support in dealing with disease and grief (Paper III). With the new medicine for SMA, the families’narratives were rewritten, and the families were facing slow improvements; small events that made a big difference. Hope was negotiated and struggled with indifferent ways by different family members, but contributed to how they dealt with the disease and the outlook on the future (Paper IV).Many of the experiences described by the families can be useful for professionals in modifying their work to support these families in accordance with their needs.

BACKGROUND AND AIMS:: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about parents' experience of care and its coordination between settings is required. This study explores (1) whether parents felt that health professionals took every opportunity to help the child feel as good as possible, (2) parents' satisfaction with various care settings, and (3) parents' satisfaction with coordination between settings.

METHODS:: Data derive from nationwide Swedish and Danish surveys of bereaved and nonbereaved parents of children with severe spinal muscular atrophy born between 2000 and 2010 in Sweden and 2003 and 2013 in Denmark (N = 95, response rate = 84%). Descriptive statistics and content analysis were used.

RESULTS:: Although most of the parents reported that care professionals had taken every opportunity to help the child feel as good as possible, one-third reported the opposite. Bereaved parents were significantly more satisfied with care than nonbereaved (81% vs 29%). The children received care at many different locations, for all of which parents rated high satisfaction. However, some were dissatisfied with care coordination, describing lack of knowledge and communication among staff, and how they as parents had to take the initiative in care management.

CONCLUSIONS:: This study highlights the importance of improving disease-specific competence, communication and knowledge exchange among staff. For optimal care for these children and families, parents should be included in dialogues on care and staff should be more proactive and take care management initiatives.

AIM: To explore parents' advice to healthcare professionals working with children with spinal muscular atrophy (SMA).

MATERIALS AND METHODS: This study derives from a Swedish nationwide survey and uses content analysis to make inferences from answers to an open-ended question concerning parent's advice to healthcare professionals. Of eligible parents who had a child born in Sweden between 2000 and 2010, diagnosed with SMA type 1 or 2, and for whom respiratory support was considered in the first year of life, 61 participated in the study (response rate: 87%). Of these, 51 parents answered the question about advice to healthcare professionals working with children with SMA.

RESULTS: More than half of the advice from parents was related to professional-family relations. The second most frequent type of advice related to two aspects of knowledge about SMA: desire that healthcare professionals possess knowledge, and desire that they provide knowledge. The parents also had advice concerning support in daily life, both to the parents and to the affected child. Other pieces of advice were related to organization of care and the parents' desire to be involved in the child's care.

CONCLUSIONS: Parents advised healthcare professionals to increase their disease-specific knowledge, to treat the parents as experts on their child, and to treat the family with respect, particularly in situations where the child's case is used as an opportunity to improve healthcare professionals' competence. Increased practical support in daily life and a case coordinator is also among parents' advice to healthcare professionals.