Bakgrund: Akut lymfatisk leukemi (ALL) är den vanligaste cancerformen bland barn och ungdomar och kan innebära stor fysisk och psykisk påfrestning hos föräldrar och barn. När barnet drabbas av ALL kan föräldrar känna oro och rädsla för att förlora barnet. Syfte: Syftet med studien var att belysa föräldrars upplevelser när barnet har drabbats av akut lymfatisk leukemi (ALL). Metod: En litteraturstudie med induktiv ansats genomfördes där elva artiklar granskades och valdes till resultat. Resultat: I resultatet framkom huvudkategorin: Upplevelse av att vara förälder till barn som drabbats av ALL med underkategorier: att känna livet krascha, att känna otillräcklighet, att oroas över ekonomin, att känna behov av förändrade föräldrastrategier och att blicka framåt. Andra huvudkategorin var Upplevelse av sjuksköterskans betydelse med underkategorier: att känna emotionellt stöd och att uppleva behov av information och undervisning. Föräldrar upplevde kommunikation med sjuksköterska som viktigt och hjälpte föräldrar hantera påfrestningen. Vid bristande kommunikation upplevde föräldrar att sjuksköterskan undanhöll information och tilliten till sjuksköterskan försvann. Slutsats: Studien kan ge kunskap om föräldrars upplevelser när barnet drabbas av ALL och vilka behov som finns av hjälp och stöd. Mer forskning krävs för att undersöka på vilket sätt sjuksköterskan kan underlätta för föräldrar under den påfrestande tiden. / Background: Acute lymphocytic leukemia (ALL) is the most common cancer in children and youth and may cause great physical and psychological burden on parents and children. Parents might worry and fear losing the child when their child has ALL. Aim: The aim of this study was to explore parent's experiences when their child suffered from acute lymphocytic leukemia (ALL). Method: A literature review with an inductive structure was performed where eleven articles were analyzed and chosen for results. Result: The result presents main category: Experience of being a parent off a child affected by ALL with subcategories: to feel life crashing, to feel insufficient, to worry about economics, to feel the need of changing parent strategies, to focus ahead. The second main category was The experience of the importance of the nurse with subcategories: to feel emotional support and to experience the need for information and education. Parents experienced that communication with the nurse was important and helped parents manage burden. Lack of communication made parents experience that the nurse withheld information and the trust disappeared. Conclusions: The study can provide knowledge about parent's experiences when their child has ALL and the need of help and support. More research is required to investigate in which way the nurse can ease parent's burden during the stressful time.

Les progrès thérapeutiques ont conduit à une augmentation de la survie à 5 ans des enfants traités pour un un cancer et qui dépasse actuellement 80%. En France il a été estimé que 50 000 adultes guéris d’un cancer pédiatrique, mais la prévalence des complications à long terme causées par la maladie et par ses traitement dépasse 60% après un suivi de 30 ans. L’objectif général de cette thèse était de faire avancer les connaissances actuelles sur la mortalité et la morbidité à long terme liées aux cancers pédiatriques.Avec les données de la cohorte FCCSS (French Childhood Cancer Survivor Study) qui inclut des sujets ayant été traités pour entre 1946 et 2000 pour un cancer pédiatrique solide, nous avons observé que le risque de mortalité chez ces patients demeure plus élevé que la population générale même à plus de 40 ans après le diagnostic de leur premier cancer. D’autre part, la mortalité liée plus aux effets à long terme des traitements anticancéreux, plus spécifiquement les seconds cancers et maladies circulatoires, a significativement baissé parmi les sujets traités plus récemment.Par ailleurs, nous avons aussi confirmé le rôle des anthracyclines dans la survenue de l’insuffisance cardiaque et montré que la fraction du volume médian du cœur ayant reçu 30 Gray était beaucoup plus élevés chez les sujets ayant développé une insuffisance cardiaque par rapport aux autres. Nous avons aussi observé que des faibles volumes du cœur (10% du volume du ventricule gauche) ayant reçus ≥30 Gy sont associés à un risque élevé de développer une insuffisance cardiaque. Cette étude est la première à rapporter une relation dose-effet basée sur des indicateurs dose-volume et ces résultats peuvent être utilisés dans la pratique clinique couranteNos travaux ont aussi montré que les patients ayant subi une néphrectomie unilatérale étaient à risque de développer une maladie rénale chronique à très long terme. L’effet de la dose de radiation reçue aux reins différait selon si les patients ayant subi une néphrectomie unilatérale ou non . En effet, une dose au seul rein même <5Gy était associée à un risque élevé de dysfonctionnement rénal. Par ailleurs, grâce aux données du registre REIN, nous avons pu montrer que l’incidence de l’insuffisance rénale terminale liée aux anticancéreux était en train d’augmenter au fil des années. Cependant ces patients étaient moins inscrits en liste d'attente comparés à d’autres malades rénaux et avaient par conséquent un accès très limité à la transplantation rénale.En conclusion, le travail effectué courant cette thèse pourrait aider à identifier les patients à risque accru de complications tardives majeures liées aux traitements anticancéreux. Nos résultats pourraient être utilisés dans la pratique clinique courante pour l’adaptation de la prise en charge thérapeutique des enfants atteints de cancer et pour les recommandations de leurs suivi à long terme. / Advances in treatment have increased the overall 5-year survival rate for childhood cancers to approximately 80%. In France, it estimated that about 50,000 adults have survived childhood cancer. However, previous studies have demonstrated that by the second decade of life, more than 60% of survivor of childhood malignancies (CCS) will suffer from at least one chronic disease related to the treatment they have received.The general objective of this thesis was to advance knowledge about the very long morbidity associated with childhood cancer, with the ultimate target to improve both the long term outcome and quality of life of survivors.Using data from the French Childhood Cancer Survivor Study (FCCSS) cohort, which includes patients treated for a solid pediatric malignancy between 1942 and 2000, we found that that mortality among CCS remained higher than the general population even after more than 40 years of the primary cancer diagnosis. A major finding of this study was that mortality attributed to adverse effects of cancer treatments (secondary primary neoplasm and circulatory disease) declined among patients treated in more recent treatment periods. We also conducted a case control study nested in the FCCSS cohort and further affirmed the role of anthracycline in the occurrence of heart failure. We demonstrated that the median heart volume that received at least 30Gy was higher among heart failure cases and that exposing small volumes of the heart (10% of the volume of the left ventricle) to at least 30Gy was associated with an elevated risk of cardiac failure. This study was the first to derive a dose response relationship based on dose-volume metrics which can be used in current clinical practice.Our results also showed that unilateral nephrectomy was associated with a high risk of renal impairment. The effect of radiation dose to the kidneys was also different among nephrectomized patients for whom any exposure to radiation was associated with an elevated risk of chronic kidney disease even at doses less than 5 Gy.Furthermore, data from the renal epidemiology and information network (REIN) registry allowed us to investigated ESKD (end stage kidney disease) related to nephrotoxic chemotherapy and/or radiation. Our registry-based study showed that ESKD related to nephrotoxic cancer treatment has been steadily increasing over the past decade in the French population. These patients experienced a much lower rate of wait-listing than matched controls with other causes of ESKD, despite similar survival on dialysis.To conclude the results of this thesis are useful to identify survivors of childhood malignancies who are at risk of developing severe long term adverse effects related to the treatment of their primary cancer. Our results could be applied in current clinical practice to help adapt current treatment strategies and improve the long-term follow-up recommendations of childhood cancer survivors.

Välgörenhetsorganisationer använder sig av emotionell marknadsföring, via bland annat storytelling i reklamfilmer, med avsikten att väcka känslor och erhålla monetära gåvor från mottagarna. En av dessa organisationerna är Barncancerfonden som år 2013 ändrade sitt kommunikationskoncept i takt med att forskningen inom barncancer gick framåt. Numera används den blå stolen, som är en symbol för Barncancerfonden sedan år 2009, för att signalera ett budskap om hopp istället för död och saknad. Detta genom att fylla stolen med barn och inte längre låta den stå tom i deras reklam. Denna studie syftar till att undersöka hur Barncancerfonden konstruerar tre utvalda reklamfilmer som använder storytelling för att förmedla sitt budskap om hopp, samt hur mottagarna i åldern 25-30 år upplever dem. Genom kvalitativa samtalsintervjuer med fem respondenter inom målgruppen, samt analys av reklamfilmernas innehåll kan denna studie konstatera att mottagare upplever reklamfilmer på olika sätt beroende på deras värderingar och tidigare erfarenheter. Faktorer som empati, relaterbarhet och berättelsens dramaturgi influerar mottagarens upplevelse av reklamfilmerna. Studien visar även att den blå stolen, som sedan 2013 är tänkt att vara en symbol för hopp om överlevnad, väcker sorgsna och oroliga känslor samt att stolen upplevs representera att något inte står rätt till.  Förtroendet för Barncancerfonden och trovärdigheten för deras budskap är beroende av hur organisationen framställer sig själva och förmedlar sina värderingar, samt att dessa stämmer överens med mottagarens uppfattning om dem. / Charities use emotional marketing, including storytelling in commercials, with the intention of evoking emotions and obtaining monetary donations from recipients. One of these organizations is the Children's Cancer Foundation, which changed its communication concept in 2013 as research into childhood cancer progressed. Nowadays, the blue chair, which has been a symbol of the Children's Cancer Fund since 2009, is used to signal a message of hope instead of death and missing. This is done by filling the chair with children and thus no longer leaving it empty in their advertising. This study aims to investigate how the Children's Cancer Fund constructs three selected commercials that use storytelling to convey their message of hope, and how the recipients aged 25-30 years old experience them. Through qualitative interviews with five respondents in the target group, as well as analysis of the content of the commercials, this study finds that recipients experience commercials differently depending on their values and past experiences. Factors such as empathy, relatability and the dramaturgy of the story influence the recipient's experience of the commercials. The study also shows that the blue chair, which since 2013 is supposed to be a symbol of hope for survival, evokes sad and anxious feelings and that the chair is perceived to represent that something is not right. Trust in the Swedish Childhood Cancer Foundation and the credibility of its message depend on how the organization presents itself and conveys its values, and whether these are consistent with the recipient's perception of them. / <p>Examensarbetet är utfört vid Institutionen för teknik och naturvetenskap (ITN) vid Tekniska fakulteten, Linköpings universitet</p>

Introduction - Quel est le modèle de suivi à long terme adapté aux attentes et besoins des jeunes adultes guéris d’un cancer dans l’enfance ? Méthode - Cette étude a pour objectif d’évaluer l’impact sur la santé de jeunes adultes guéris d’un cancer pédiatrique d’un modèle de suivi associant auto-questionnaire et consultation médicale. De jeunes adultes ayant eu un cancer entre 1987 et 1992 en Rhône-Alpes-Auvergne ont été vus en consultation médicale et psychologique de Suivi A Long Terme (SALTO), précédée et suivie d’un auto-questionnaire. De plus, la capacité d’adaptation de leur système nerveux autonome (SNA) a été évaluée afin de déterminer les caractéristiques des sujets dont le SNA était altéré. Résultats - 207 jeunes adultes ont rempli un questionnaire pré-consultation et 197 ont déclaré avoir de nombreuses séquelles, en moyenne 3,4 séquelles, ce qui a été confirmé par l’observation médicale faite chez les 150 consultants (2,6 séquelles observées/sujet). Après la consultation, près de 70% des sujets ont modifié leur nombre de séquelles déclarées. Aucune caractéristique particulière n’a pu être clairement mise en évidence quant aux personnes ayant une capacité de régulation du SNA altérée mais une relation significative a été établie entre SNA altéré et observation d’une séquelle cardiovasculaire (P=0,049). Une enquête de satisfaction a montré une opinion très favorable à la consultation SALTO. Environ 80% des sujets présentant un trouble psychiatrique au moment de la consultation ne bénéficiaient d’aucun suivi psychologique.Conclusion - Un suivi à long terme des jeunes adultes guéris d’un cancer dans l’enfance est nécessaire, faisable et répond à une demande réelle / Introduction - What is the model of long-term follow-up adapted to the expectations and needs of youngadults cured of a childhood cancer? Method – The aim of this study was to estimate the impact of a long-term follow-up care (LTFU) associated self-questionnaire and medical consultation, on the health of young adult survivors of childhood cancer. Young adults with childhood cancer between 1987 and 1992 in Rhône-Alpes-Auvergne were seen during a LTFU medical and psychological consultation (SALTO), which was preceded and followed by a self-questionnaire. Furthermore, the capacity of adaptation of their autonomous nervous system (ANS) was estimated to determine the characteristics of the subjects whose ANS was altered. Results - 207 young adults completed a questionnaire before consultation and 197 of them declared having sequalae, on average each self-reported 3.4 late effects, which was confirmed by a medical observation made at 150 consultations (mean 2.6 observed late effects/subject). After the consultation, about 70 % of the subjects modified their number of self-reported late effects. No particular characteristic was clearly highlighted in people with an altered capacity of ANS regulation but a significant relationship was established between altered ANS and cardiovascular complication (P=0,049). A satisfaction survey showed a very favorable opinion about the SALTO consultation. Approximately 80% of the subjects presenting a psychiatric disorder at the time of the consultation had received no psychological follow-up at this time. Conclusion - Long-term follow-up of young adult survivors of a childhood cancer is necessary, feasible and answers a real need

When a child is diagnosed with cancer, the roles and responsibilities of family members change to accommodate the demands of the illness. The current study aimed to explore the experiences of mothers of children with cancer, focusing on their constructed roles within the family context and their social support. A case study design within the qualitative research approach was employed, underpinned by social constructionism as a theoretical framework. Three mothers were selected, using a combination of purposive and snowball sample techniques. Rich descriptive data were collected from three mothers through semi-structured interviews and reflective essays, and analysed using thematic analysis techniques. Results showed that although mothers of children with cancer experience some common themes, there are contextual differences influencing how they construct their stories. The following main themes were identified in the comparative analysis: events leading to the diagnosis, emotions, life changes, the effect of the illness and coping. / Psychology / M.A. (Psychology)

Abstract Leukemia treatment has been implicated to be responsible for a diversity of long-term adverse effects (Pui 2008), which can occur even years after diagnosis and can seriously impair survivors’ performance status and quality of life (Campbell et al. 2007, Zeltzer et al. 2008). The aim of the present work was to assess health-related quality of life in long-term survivors of acute lymphoblastic leukemia (ALL), and to find out whether vocational rehabilitation can promote the coping at work of young people who take part in a training intervention or help them find employment. Neuropsychological testing was performed on 64 survivors. Cranial irradiation had been administered to 44 of the survivors, while 20 survivors had been treated solely with chemotherapy. A control group consisted of 45 healthy young adults. We found that young adult survivors of childhood ALL treated with cranial irradiation had clear progressive deficits in their neurocognitive functioning at a mean of 20 years after diagnosis compared with healthy controls. Non-irradiated ALL survivors performed significantly better, but even they had statistically significant impairments in some of the neuropsychological test scores compared with the controls. Rand-36-Item health Survey (RAND-36) was used to assess subjective HRQoL, depressive symptoms were assessed with Beck Depression Inventory (BDI-21), and mental distress with General Health Questionnaire (GHQ-12) in 74 survivors of ALL. The control group consisted of 146 healthy young adults selected from local population registry. ALL survivors showed good HRQoL scores in comparison to the control group. Patients who had been treated for an ALL relapse and had received the most intensive chemo- and radiotherapy had significantly higher scores on mental health and vitality than the controls. Survivors of ALL report fewer depressive symptoms and equal mental well-being compared to healthy controls. Nine out of 63 survivors were selected for rehabilitation based on their occupation and psychosocial difficulties. The occupational rehabilitation course improved physical fitness and decreased overweight in long-term survivors of ALL, but impaired their HRQoL. Our findings support the idea that ALL survivors’ subjective experience of well-being is possibly affected by a repressive adaptive style. / Tiivistelmä Leukemiahoidoilla on todettu olevan pitkäaikaisvaikutuksia (Pui 2008), jotka voivat ilmetä jopa vuosia diagnoosin jälkeen heikentäen sairaudesta selvinneiden toimintakykyä ja elämänlaatua (Campbell et al. 2007, Zeltzer et al. 2008). Tämän tutkimuksen tavoitteena oli arvioida akuutista lymfaattisesta (ALL) leukemiasta selvinneiden terveyteen liittyvää elämänlaatua pitkällä aikavälillä sekä selvittää, voidaanko ammatillisen kuntoutuksen avulla edistää interventioon osallistuneiden työssä selviytymistä tai työllistymistä. Neuropsykologiseen tutkimukseen osallistui 64 ALL pitkäaikaisselviytyjää. Heistä 44 oli saanut pään alueen sädehoitoa ja 20 pelkästään solunsalpaajahoitoa. Verrokkiryhmässä oli 45 tervettä nuorta aikuista. Havaitsimme, että lapsuudessa pään alueen sädehoitoa saaneilla ALL-selviytyjillä oli verrokkeihin verrattuna selkeitä progressiivisia muutoksia neurokognitiivisessa toimintakyvyssä keskimäärin 20 vuotta diagnoosista. Ne, jotka eivät olleet saaneet sädehoitoa suoriutuivat huomattavasti paremmin, mutta heilläkin havaittiin tilastollisesti merkittäviä puutoksia joillakin neuropsykologisten testien osa-alueilla verrokkeihin verrattuna. 74 entisen ALL-potilaan terveyteen liittyvää elämänlaatua (HRQoL) mitattiin Rand-36 -mittarilla, masennusoireita Beckin masennustestillä (BDI-21) ja henkistä hyvinvointia General Health Questionnaire -mittarilla (GHQ-12). Verrokkiryhmäksi valittiin väestörekisteristä 146 tervettä nuorta aikuista. ALL-ryhmässä tutkittavien terveyteen liittyvää elämänlaatua mittaavat pisteet olivat hyvät verrokkiryhmään verrattuna. Ne potilaat, joita oli hoidettu leukemian uusiutumisen takia ja jotka olivat saaneet intensiivisintä solunsalpaaja- ja sädehoitoa saivat huomattavasti paremmat pisteet psyykkisen hyvinvoinnin ja vitaalisuuden osa-alueilla kuin verrokit. ALL -selviytyjät raportoivat vähemmän masennusoireita, ja he arvioivat psyykkinen hyvinvointinsa yhtä hyväksi kuin verrokit. Yhdeksän ALL pitkäaikaisselviytyjää osallistui heille suunnattuun ammatilliseen kuntoutusinterventioon. Ammatillinen kuntoutuskurssi paransi ALL -selviytyjien fyysistä suorituskykyä ja vähensi ylipainoa, mutta heikensi terveyteen liittyvää elämänlaatua. Tutkimustulokset tukevat ajatusta, että repressiivinen adaptaatio voi vaikuttaa lapsuusiän leukemiasta selvinneiden subjektiiviseen hyvinvoinnin kokemukseen.

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Increasing time trends in the recorded incidence of childhood cancer have been reported in many different settings. The extent to which these trends reflect real changes in incidence, rather than improvements in methods for diagnosis and registration, is controversial. Using data from the National Registry of Childhood Tumours (NRCT), this thesis investigates time trends in cancer diagnosed under age 15 in residents of Britain during 1966-2005 (54650 cases), and considers potential sources of artefact in detail. Several different methods are used to estimate completeness of NRCT registration. The history of methods for diagnosis and registration of childhood cancers in Britain is described, and predictions are made for effects on recorded incidence. For each of the 12 main diagnostic groups, Poisson regression is used to fit continuous time trends and ‘step’ models to the annual age-sex-standardised rates by year of birth and year of diagnosis. Age-specific rates by period, and quinquennial standardised rates for diagnostic subgroups, are shown graphically. For three broad groups (leukaemia, CNS tumours and other cancer), geographical variation is compared by period of diagnosis. The results of these analyses are discussed in relation to the predicted artefacts. The evidence for a positive association between affluence and recorded incidence of childhood leukaemia is briefly reviewed. A special form of diagnostic artefact, the ‘fatal infection’ hypothesis, is proposed as an explanation of both this association and the leukaemia time trend. This hypothesis is examined in a novel test based on clinical data. The recorded incidence of childhood cancer in Britain increased in each of 12 diagnostic groups during 1966-2005 (from 0.5% per year for bone cancer to 2.5% for hepatic cancer, with 0.7% for leukaemia). Evidence presented here suggests that these increases are probably artefacts of diagnosis and registration. The potential implications for epidemiological studies of childhood cancer should be considered.

This study examines through autoethnographic inquiry my research journey in the world of childhood cancer. The unfolding research experience eventually led to the focus of this investigation which is exploring stories of coping with childhood cancer in a support group for parents. Using the principles of ethnographic epistemology this study explores the stories of eight parents whose children were diagnosed with cancer and who decided to join the support group for parents called, TOUCH. An overview of the existing body of knowledge on childhood cancer and the family is presented as well as the value of a social support group in parenting a child with cancer. The need of a conceptual shift in order to understand the problem of parenting a child with cancer is propagated. The stories of eight parents within the setting of a social support group are presented. Through the principles of the qualitative method of ethnography the story of the child's cancer is described by means of emerging themes. The coping mechanisms used to cope in this world of uncertainty and ambiguity, follows. Finally the contribution of the support group is discussed in terms of my relationship with the group member, the group members' communication pattern and what was perceived to be helpful to the group member. The eight stories discussed all follow the same pattern. Four hypotheses emerged from the eight stories described and are presented in the final chapter. The strengths and limitations of the study are discussed as well as recommendations for future research. / Psychology / D. Lit. et Phil. (Psychology)