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Podpora družini pri skrbi za otroka, ki je zbolel za rakom
ID Krivograd, Eva (Author), ID Mešl, Nina (Mentor) More about this mentor... This link opens in a new window, ID Kreft Hausmeister, Ivana (Comentor)

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Abstract
Ko otrok zboli za rakom, je življenje tako otroka kot vseh družinskih članov postavljeno v novo realnost, polno edinstvenih preizkušenj. Tako je namen moje raziskave prispevati k boljšemu razumevanju življenjskega sveta družin, katerih otrok je zbolel za rakom. V tem težkem obdobju je namreč ključnega pomena celovito razumevanje potreb in izzivov, s katerimi se soočajo družinski člani, ter oblikovanje njim prilagojenih programov podpore ter pomoči. Zanimalo me je predvsem, kako so starši doživljali otrokovo bolezen, s kakšnimi izzivi so se srečevali, kako se je spreminjala družinska dinamika in kakšna podpora jim je bila na voljo tekom otrokovega zdravljenja. Ugotovila sem, da so se starši v procesu zdravljenja njihovih otrok soočali s številnimi neprijetnimi čustvi in občutki. Poleg začetnega šoka so se pojavljali še strah, groza, žalost, obup, tesnoba, občutek krivde in občutek nemoči. Z otrokovo boleznijo so se spoprijemali na različne načine in se čez čas tudi prilagodili. Starši so prav tako opazili spremembe v doživljanju sveta in samega sebe. Z boleznijo otroka so se pri njih pojavili številni izzivi, ki so jim povzročali dodatno stisko. Povezani so bili s komunikacijo tako z zdravstvenim osebjem kot najbližjimi, usklajevanjem skrbi za otroke, reorganizacijo poklicnega življenja, finančnimi in potnimi stroški, skrbjo zase, izolacijo, odzivom okolice ter prijateljev. Pojavile so se skrbi glede bolnega otroka, osebni izzivi ter izzivi, povezani s ponovno vzpostavitvijo ravnovesja v družinski dinamiki. Bolezen otroka je bila namreč povezana s spremembami v družinski dinamiki, natančneje s spremembami v partnerskem odnosu, v odnosu z otroki, v vlogah družinskih članov, v komunikaciji med partnerjema in v mejah ter pravilih, ki so pred otrokovo boleznijo veljala znotraj družine. Starši so se posluževali predvsem neformalne pomoči in podpore, medtem ko je bilo sodelovanje s strokovnjaki redko. Ugotovila sem, da večina staršev ni imela izkušnje sodelovanja s socialno delavko in si vloge le-te pri pomoči in podpori družinam niti ne zna predstavljati. To kaže na slabo razvitost socialnega dela v zdravstvu v Sloveniji, natančneje na področju otroške hematologije in onkologije, ter po mojem mnenju nujno potrebo po spremembi.

Language:Slovenian
Keywords:rak v otroštvu, proces zdravljenja, soočanje z boleznijo otroka, spremembe družinske dinamike, podpora družini
Work type:Bachelor thesis/paper
Organization:FSD - Faculty of Social Work
Year:2024
PID:20.500.12556/RUL-160158 This link opens in a new window
Publication date in RUL:22.08.2024
Views:193
Downloads:63
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Secondary language

Language:English
Title:Supporting a family in caring for a child with cancer
Abstract:
When a child falls ill with cancer, both the child and all family members have to face a new reality, full of unique trials. Thus, the purpose of my research is to contribute to a better understanding of the situation of families whose children have been diagnosed with cancer. In this difficult period, a comprehensive understanding of the needs and challenges faced by family members, as well as the creation of support and assistance programs adapted to them, is of key importance. I was mainly interested in how the parents experienced their child's illness, what challenges they encountered, how the family dynamic changed and what support was available to them during the child's treatment. I found that parents faced many unpleasant emotions and feelings in the process of treating their children. In addition to the initial shock, fear, horror, sadness, despair, anxiety, guilt and helplessness appeared. They coped with their child's illness in different ways and adapted over time. Parents also noticed changes in their perception of the world and themselves. With the child's illness, many challenges arose for the parents, which caused them additional distress. They were related to communication with both medical staff and relatives, coordination of care for children, reorganization of professional life, financial and travel expenses, self-care, isolation, reaction of their environment and friends. Additionally, they had to take care of a sick child, personal challenges, and challenges related to rebalancing the family dynamic. The child's illness was associated with changes in family dynamics, more precisely with changes in the relationship between partners, in the relationship with children, in the roles of family members, in communication between partners and in the boundaries and rules that applied within the family before the child's illness. Parents mainly used informal help and support, while cooperation with professionals was rare. I found that most parents had no experience of working with a social worker and could not even imagine her role in helping and supporting families. This shows the poor development of social work in healthcare in Slovenia, more precisely in the field of pediatric hematology and oncology, and, in my opinion, the urgent need for change.

Keywords:childhood cancer, treatment process, coping with the disease, changes in family dynamics, family support

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