Bereaved mothers and fathers : Grief and psychological health 1 to 5 years after losing a child to cancer

Bereaved parents often experience severe suffering and are at elevated risk for developing grief complications such as prolonged grief and other negative psychological health outcomes. The general aim of this thesis was to investigate symptoms of prolonged grief, depression, posttraumatic stress, anxiety, rumination, and sleep disturbance in parents who had lost a child to cancer 1 to5 years earlier. Attention was also given to the potential impact on the parents’grief of their experiences during the child’s illness, and finally to the parents’ views on their coping with grief. Methods: A cross-sectional design for data collection was used for all four studies in this thesis. Both quantitative and qualitative methods were used for data analysis, to provide various and complementing perspectives on bereaved parents’ grief and their psychological health. Results:Bereaved parents’ symptom levels of prolonged grief and psychological symptoms were found to be elevated and neither time- nor gender-dependent across the first five years after the loss. We also found that some of the parents’experiences during their child’s illness were associated with their grief and psychological symptoms. These factors differed for mothers and fathers. Mothers valued trustful relations with health care professionals, while fathers reported better psychological health when they had received support in practical matters. Findings also showed that parents found certain factors facilitated or complicated their coping with grief. Unsurprisingly, social support promoted positive coping with grief, while a less familiar factor – going back to work – could make coping with grief harder. Clinical implications: The findings provide knowledge which can improve the care for children, through development of support to their parents in pediatric oncology contexts and in bereavement

Bereaved mothers and fathers : Grief and psychological health 1 to 5 years after losing a child to cancer

Bereaved parents often experience severe suffering and are at elevated risk for developing grief complications such as prolonged grief and other negative psychological health outcomes. The general aim of this thesis was to investigate symptoms of prolonged grief, depression, posttraumatic stress, anxiety, rumination, and sleep disturbance in parents who had lost a child to cancer 1 to5 years earlier. Attention was also given to the potential impact on the parents’grief of their experiences during the child’s illness, and finally to the parents’ views on their coping with grief. Methods: A cross-sectional design for data collection was used for all four studies in this thesis. Both quantitative and qualitative methods were used for data analysis, to provide various and complementing perspectives on bereaved parents’ grief and their psychological health. Results:Bereaved parents’ symptom levels of prolonged grief and psychological symptoms were found to be elevated and neither time- nor gender-dependent across the first five years after the loss. We also found that some of the parents’experiences during their child’s illness were associated with their grief and psychological symptoms. These factors differed for mothers and fathers. Mothers valued trustful relations with health care professionals, while fathers reported better psychological health when they had received support in practical matters. Findings also showed that parents found certain factors facilitated or complicated their coping with grief. Unsurprisingly, social support promoted positive coping with grief, while a less familiar factor – going back to work – could make coping with grief harder. Clinical implications: The findings provide knowledge which can improve the care for children, through development of support to their parents in pediatric oncology contexts and in bereavement

Patientorganisationer som företräder riskgrupper under covid-19-pandemin : förändringar i organisation och relation till andra aktörer

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 Sverige uppvisar resiliens under covid-19-pandemin

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

Övergången från att vara patient med cancer till person med erfarenhet av cancer - Civilsamhällets roll i rehabilitering

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..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

Övergången från att vara patient med cancer till person med erfarenhet av cancer : Civilsamhällets roll i rehabilitering

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.

Övergången från att vara patient med cancer till person med erfarenhet av cancer : Civilsamhällets roll i rehabilitering

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.

Rumination in bereaved parents : Psychometric evaluation of the Swedish version of the Utrecht Grief Rumination Scale (UGRS)

Background Bereaved parents may be at higher risk to develop persistent, severe and disabling grief, termed prolonged grief. Grief rumination, repetitive thinking about the causes and consequences of the loss, is a malleable cognitive process that maintains prolonged grief. Grief rumination can be measured with the Utrecht Grief Rumination Scale (UGRS). The present study aimed to examine the psychometric properties of the new Swedish version of the UGRS in a sample of bereaved parents. Methods A Swedish nationwide postal survey including measures of demographic and loss-related variables, grief rumination (UGRS), and symptoms of prolonged grief, posttraumatic stress, anxiety, depression, and insomnia, was completed by 226 parents (133 mothers and 93 fathers) who lost a child to cancer in the past five years. Psychometric properties of the UGRS were examined through confirmatory factor analyses (CFA), reliability analyses, and assessment of UGRS score associations with symptoms of prolonged grief, posttraumatic stress, depression, anxiety, and insomnia. Results The internal consistency of the Swedish UGRS was good. The CFA yielded an acceptable fit for a two-factor hierarchical model with five sub-factors. Grief rumination was positively associated with all psychopathology symptom measures. Higher scores on UGRS were found in parents with possible prolonged grief disorder compared to those without (d=1.47). Moreover, the Swedish UGRS was associated with prolonged grief symptoms over and above loss-related and demographic variables and other psychopathology symptoms. Conclusions The Swedish UGRS demonstrated good psychometric properties, which supports its use as a measure to assess grief rumination in Swedish bereaved parents in research and practice

Communication about diagnosis and prognosis-A population-based survey among bereaved parents 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