Objective Siblings of childhood cancer patients experience social challenges. The results presented in this article are part of a larger qualitative study aiming to generate empirical knowledge about social consequences of childhood cancer from the family's perspective. Methods Data were collected through interviews, observational studies, and questionnaires. The study included 68 childhood cancer patients, 39 siblings, and 39 parents from a total of 78 families. Grounded theory informed the data analysis. Results Major life changes caused by childhood cancer entail an emotional hierarchy regarding the accommodation of each family member's need for help. This study identified a dynamic three‐variable, four‐adaption model for adaption strategies among siblings towards their parents, based on the sibling's perspective: (1) receives help without asking; (2) receives help after asking; (3) receives no help despite asking; and (4) receives no help and does not ask. Three variables are elaborative to understand the dynamic in adaption strategies: the patient's prognosis, the course of the disease, and the current situation of the diagnosed child. Even though the adaptions are reported by siblings, both patients and parents are aware of and concerned about the siblings' challenges. Conclusions These results have implications for practice and have the potential to improve social and health care professionals' awareness and ability to offer support and information needed by the families and the siblings. The knowledge presented in this article should be considered basic health care information in line with other information such as treatment protocols.
Objective: Families affected by childhood cancer need to adapt either temporarily or permanently. This study identifies variables that influence this adaption in positive or negative ways by presenting a classic grounded theory. Methods:This inductive, qualitative study included 69 childhood cancer patients, 39 siblings, 42 parents, and 24 childhood cancer survivors from 104 families. Results:The families enter a social process after diagnosis characterized by either shuttling between the well-known and the new or being in a situation with both aspects. The extent depends on the stage of the treatment (initial phase, during treatment, or the end of the course of treatment) and on four variables: (1) the diagnosis and prognosis; (2) the course of the disease, including duration of treatment or hospitalizations, and separation from the remaining family; (3) the child's current state, including symptoms, hospitalizations, and current risk of death or relapse; and (4) whether previous and current needs have been met. Conclusions:These variables offer a possible explanation of insufficient coping strategies, and they should be used to identify potentially vulnerable families. The dynamic of the variables imply that families should be reevaluated during each of the three phases, as the risk of changes to the family's everyday life may increase and therefore their needs may also change. K E Y W O R D Schildhood cancer, child health, family, grounded theory, oncology nursing, psycho-oncology | INTRODUCTIONEvery year approximately 300,000 children (aged 0 to 19 years) are diagnosed with cancer. 1 This condition affects the everyday life and routines in the entire family to varying degrees, and a change in family roles occurs as the parental attention is shifted to the child with cancer. 2,3 Consequently, all family members must deal with changes in responsibilities, intense feelings, and communication to manage the family challenges directly linked to the childhood cancer. [4][5][6] Research has demonstrated that some families adapt while others do not, 4,7,8 and it is the families who do not adequately adapt who are at risk of problems at both the individual and family levels. 4,[9][10][11][12] This study aims to clarify why some families do not have the ability to adapt sufficiently either temporarily or permanently. In addition, the study aims to identify variables that influence this adaption in either a positive or negative way. Three research questions were used to investigate (1) how the disruption caused by childhood cancer affects the family, how they process the disruption, and where the disruptions are experienced; (2) what factors influence 282 -
Livet forandres uden varsel for børn og familier, der rammes af børnekræft. Den trygge og kendte hverdag ændres, og børnekræftpatienter mister muligheden, periodisk eller permanent, for at leve et »normalt« børne- og ungdomsliv. Børnekræftoverlevere fortæller, at deres overlevelse af kræften betegnes med positive ord såsom en succes og en sejr, og at »man« har vundet over kræften. At overleve kræft og vinde livet er dog sjældent uden fysiske, mentale og sociale konsekvenser. Der er en underbelyst skyggeside: et liv med senfølger, der fylder meget for overleverne og har store konsekvenser for deres mulighed for at indgå i og bidrage til samfundet. Artiklen er et empirisk vidensbidrag, der præsenterer delresultater fra ph.d.-projektet »Sociale konsekvenser af børnekræft« med udgangspunkt i kvalitative interviews og observationsstudier af og med 23 børnekræftoverlevere (18-39 år). Artiklen formidler viden om nogle af de sociale senfølger af børnekræft, der kan optræde i ungdoms- og voksenlivet. Yderligere belyser artiklen, hvorfor der ikke er mere fokus på senfølger, og hvilke forklaringer børnekræftoverlevere selv har på dette. I tillæg benyttes Erwing Goffmans og Aaron Antonovskys teorier samt anden relevant forskningslitteratur om børnekræftoverlevere til at forstå og underbygge de udfordringer, børnekræftoverlevere beskriver.
Forskningsetiske refleksioner er en obligatorisk del af videnskabelig forskning. Nationale og internationale forskningskodeks tilbyder regelsæt samt principielle retningslinjer såsom ikke at gøre skade og at indhente informeret samtykke, men hvordan omsættes det til praksis? Der argumenteres for, at etiske refleksioner har en saerlig karakter, når sorgramte børns viden og erfaringer inddrages i kvalitativ forskning. Artiklen præsenterer tre opmærksomhedspunkter, der kan supplere de forskningsetiske kodekser og vejlede forskere, som påbegynder undersøgelser med sorgramte børn. Artiklen diskuterer vigtigheden af at inkludere børneperspektiver på trods af de forskningsetiskeudfordringer, der kan opstå. Tre cases fra forfatternes egen forskning, som omhandler børn berørt af livstruende sygdom og dødsfald, eksemplificerer, hvilke forskningsetiskeudfordringer man kan møde i praksis, og hvordan disse kan imødekommes.
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