Background: Cancer is still the leading cause of non-accidental death in childhood, although the majority of children diagnosed in high-income countries survive their illness. In accordance with international standards, equal and early access to palliative care should be available to children and adults. Yet communication and prognostic disclosure may influence the timing of involvement in palliative care.

Purpose: To investigate whether parents perceived that their child receivedpalliative care and to what extent that contrasted parents’ perceptions of their child’s care and symptoms in the last month of life.

Methods: A nationwide population-based parental questionnaire study in Sweden, one to five years after their child’s death (n=226). Descriptive statistics were used.

Results: A majority of parents (70%) reported that they were aware that their child received palliative care and they were informed about the incurable disease (57%) within 3 months before the child died. The most common diagnosis among children receiving palliative care was a brain tumor (45%) with a disease related death (90%) andthecarewasoftenreceivedat home(44%).Basedonthereports of parents who felt that their child did not receive palliative care, 45% were informed within days or hours about the child’s incurable disease, 45% of these children were diagnosed with leukemia, 60% died at the intensive care unit, and 49% died of treatment-related complications. It was most common for families who lived in urban areas (28%) to report their child received palliative care, in comparison to families living in sparsely populated areas (11%). A significant proportion of parents whose child received palliative care (96%) stated that the healthcare professionals were competent in caring for their child, for those who reported no palliative care it was slightly lower (74%). In both groups many children were affected by multiple symptoms the last month of life.

Conclusions: The study findings highlight the role of understanding parental perceptions of pediatric palliative oncology care, the role of initiating palliative care early, the need of access to national equitable PC and professional competence across the lifespan, regardless of diagnosis and place of residence.

Palliativ vård av barn är en aktiv, multidimensionell vårdform som inkluderar familjen och bedrivs av interdisciplinära team.

En nationell studie med frågeformulär har undersökt om vårdnadshavare till barn med cancer uppfattade att deras barn fick palliativ vård innan barnet dog och deras syn på den vård barnet fick den sista månaden.

Majoriteten av vårdnadshavarna rapporterar att barnet har fått palliativ vård och att personalen var kompetent. Många vårdnadshavare uppfattade att deras barn upplevde smärta den sista tiden i livet. 

Geografiska skillnader föreligger, och färre vårdnadshavare i glesbygd rapporterar att barnet fått palliativ vård.

Studien visar på behovet av tillgång till nationell jämlik palliativ vård.

[Palliative care in paediatric oncology - a national parental perspective]

The WHO definition of paediatric palliative care (PPC) emphasises the role of active multidimensional care, carried out with interdisciplinary competence, and providing support to the entire family. The aim of the current national study was to investigate whether parents perceived that their child received palliative care (PC) before the child died of cancer and the parent's view of the care during the child's last month of life. In 2016, parents (n=226) completed a study-specific survey, and a majority reported that their child had received PC with good professional competence. However, many parents reported that the child was greatly affected by pain in the last month of life. Geographical differences indicated that parents who live in sparsely populated areas to a lesser extent reported that their child received PC. Lastly, our conclusion is that access to equal PPC and improved symptom control is crucial for children and their families.

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. 

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.

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.

Bereaved individuals often experience sleep problems. The aim of this study was to evaluate feasibility and preliminary effects of internet-delivered cognitive behavioral therapy for insomnia (iCBT-i) in bereaved parents. Parents were randomized to iCBT-i (n = 10) or an active control group (n = 11). Primary outcome (insomnia) and secondary outcomes (prolonged grief, depression, posttraumatic stress, and grief rumination) were assessed pre- and post-treatment, with 9- and 18-month follow-ups. Feasibility was assessed post-treatment and one month later. Most parents reported positive effects of the treatment. The intervention group improved significantly from pre- to post-treatment and had a significantly larger reduction of insomnia when analyzed over all four time-points (Wald χ² = 30.0, p < 0.001), although the effect at post-treatment was very small (d = 0.1) for insomnia. Thus, iCBT-i was feasible and was related to reduced insomnia and psychological distress in bereaved parents, both short- and long-term, but the results regarding the treatment effect are preliminary due to the small sample size.

Communication is as important as the drug and the knife in medical care, particularly when patients are facing life-threatening conditions. However, the ability to communicate effectively has been commonly associated with strong emotional barriers among healthcare professionals and family members. Studies that have focused on paediatric oncology have showed that openness about the transition from curative to palliative care is frequently avoided. As long ago as the 1980s a paper in this journal reported that children often wanted to share their thoughts and feelings at the end of life, but that adults often failed to recognise that need.

Objectives: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to bereaved parents. This study, therefore, aimed to explore parents' views on what facilitated or complicated their grief coping after losing a child to cancer.

Methods: This study was derived from a nationwide postal survey. Cancer-bereaved parents (n = 161) provided written responses to two open-ended questions: "Is there anything that has helped you cope with your grief after your child's death?" and "Is there anything that made it difficult for you to cope with your grief?" Content analysis was used to analyze the responses.

Results: Parents reported that a supportive social network of family and friends, and having remaining children, facilitated their coping with grief. Meeting professional counselors and meeting other bereaved parents, connecting to memories of the deceased child in various contexts, including school and pediatric care settings, were also reported facilitating grief coping. Parents stated that the following experiences had complicated grief coping: additional losses in their family or social network; not being able to share emotions with their partner; when they perceived that friends, relatives, or colleagues lacked empathy or patience; when they felt challenging demands from employers at a too early stage.

Significance of results: This study contributes to the understanding of parents' grief experiences and what has facilitated or complicated their coping with grief, which can help health care professionals and others improve bereavement support services.

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.

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.