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Roller coasters and uphill struggles : the impact of the medical management of childhood life-threatening and life-shortening conditions on family relationships, roles and emotional wellbeingDawson, Pamela Mary January 2009 (has links)
This study is the result of observations and questions that stem from my professional role as a senior key worker with families where a child has a life-threatening or life-shortening illness. This project explores the cultures of families where a child has been diagnosed with a potentially fatal medical condition. By examining parents' accounts, other family members' accounts and professionals' accounts of the ways treatment regimes are experienced, the study indicates typical differences in the ways life-threatening and life-shortening illnesses affect family relationships. The study also examines variations in what these illnesses 'mean' for families and the ways that treatment regimes help to shape these meanings. A combination of qualitative research methods was used via in depth, semi-structured and informal interviews with families and professionals, and included participant observation. Data was collected from five informant groups: a) mothers where a child had been diagnosed with cancer or was living with a life-shortening condition; b) families of the ill children, suffering from both cancer and from a number of severe chronic medical conditions; c) well siblings living alongside an ill sibling; d) ill children themselves; e) professionals from health and psychosocial backgrounds who worked with the families. A detailed summary of the sample may be found in Appendix 1 page 291 Although limited, the findings have helped to provide a hypothesis outlining typical differences in the ways life-threatening illnesses and lifeshortening illnesses affect family relationships. They also offer health professionals and others working with ill children insight into the crises and challenges which might typically face families during the course of their children's treatment. Medical technology is successfully prolonging the lives of children diagnosed with lifethreatening and life-shortening illnesses who would not have survived the same illness some years ago. In the light of these improvements, findings from this study indicate that when the illness is life-threatening as in childhood cancer, the treatment regimes and the sudden and frequent hospitalisation of the mother and ill child impact on the daily life of the family, changing the family dynamic and creating a sense of an emotional rollercoaster ride - with horror, hope, fear, relapse and remission all part of their journey. Conversely, findings suggest that in cases of rare, often difficult to diagnose, lifeshortening conditions, the family is drawn into a life-long up-hill struggle where the medical management of the child takes priority over, and increasingly dictates, other family members' relationships, roles and activities. Unlike the intermittent but extreme crises of life-threatening illnesses such as cancer, life-shortening conditions continue for the lifetime of the child, creating enduring long-term pressures on the family. However, in both categories of illness the families' lives are entwined with various professionals who appear largely unaware of how the medical management of these illnesses drain the practical, financial and emotional resources of the family. The findings of this research raise implications for practice and future policy. I conclude by suggesting that there is a need for an increased understanding, acknowledgement and respect from professionals that the primary carers in both categories of illness are to a greater or lesser extent, experts in their own children's illnesses. NHS Trusts, Children's Hospices and Children's Agencies produce a variety of care pathways for sick children, and although training in communication with patients is already in place, there is considerable room for improving the day-to day skills and approaches of the various professionals, particularly health professionals involved in paediatrics and their communication with the parents and the ill child. There is also a need for increased understanding by professionals of the particular daily challenges faced by families with children undergoing treatment for these conditions.
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Familjens upplevelse av hur livet kan påverkas när ett barn drabbats av cancer - Behov av stöd från vårdpersonal: En litteraturöversikt / The families’ perceptions of how life might be affected when a child is diagnosed with cancer - Support they indicate they need from healthcare professionals: A literature reviewMikkola, Mimmi, Sundberg, Madelene January 2017 (has links)
Bakgrund : Årligen drabbas ungefär 300 barn av cancer. När ett barn blir sjukt drabbas hela familjen, och därför är det viktigt att vårdpersonal förstår vilka behov av stöd familjen har, samt hur vårdpersonalen kan tillfredsställa dessa behov. Att arbeta familjecentrerat underlättar för vårdpersonalen att se dessa behov, och främjar familjens upplevelse av vården. Syfte : Syftet med denna litteraturöversikt var att undersöka familjens upplevelse av hur livet påverkas när ett barn drabbas av cancer, samt vilket stöd de anger att de behöver av vården. Metod : En litteraturöversikt som baseras på 16 vetenskapliga artiklar. Resultat : Resultatet visade att familjens upplevelser var individuella, men det fanns några karaktäristiska drag. De flesta föräldrarna upplevde chock vid diagnostillfället, och även känslan av skuld över att inte kunna göra något åt situationen. Vardagen förändrades kraftigt för familjen, där bland annat föräldrarna upplevde sig kraftlösa och syskonen kände sorg, både över diagnosen men även på grund av den nedsatta uppmärksamheten de fick av sina föräldrar. Familjen fick anpassa livet efter sjukdomen, där relationerna blev påverkade men även ekonomin. Faktorer som underlättade situationen för familjen var bland annat socialt stöd, och för de som var troende var tron ett stort stöd. Informationen föräldrarna fick angående sjukdomen och behandlingen av vårdpersonalen påverkade deras mående. Slutsats : Familjens upplevelse var känslomässigt omtumlande, känslorna var individuella men många kände bland annat chock och kaos. Familjens upplevelse var att allt vändes upp och ned. Behovet av stöd hos föräldrar och syskon skiljde sig åt. Syskon uppskattar stöd i form av uppmärksamhet och information om deras syskons sjukdom och behandling. Föräldrar vill ha stöd i form av information, att få vara delaktiga och att kunna prata med vårdpersonalen. / Background : Yearly, approximately 300 Swedish children is diagnosed with cancer. When a child gets ill the whole family is involved, and therefore it is important for health care personnel to understand what needs the family has and how to satisfy these needs. To work family-centred facilitates for the health care personnel to see these needs, and promotes the family's experience of care. Aim : The aim of this study was to examine the families’ perceptions of how life is affected when a child is diagnosed with cancer, and what support they indicate they need from healthcare professionals. Method : A review based on 16 scientific articles. Result : The result showed that family experiences were individual, but there were some characteristic features. Most parents experienced shock at the time of diagnosis, and also the feeling of guilt over being unable to do anything about the situation. Everyday life changed dramatically for the family. The parents had feelings like powerless and the siblings felt sadness, both over the diagnosis, but also because of the reduced attention they received from their parents. The family had to adapt life after the disease, where the relationships were affected, but also the economy. Factors that facilitated the situation of the family included social support, and for believers, faith was a great support. The information the parents received of healthcare professionals regarding the disease and the treatment of the sick child affected their way to handle the situation. Conclusion : The family's experience was emotionally turbulent, the feelings were individual, but many felt shock and chaos. The family's experience was that everything was turned upside down. The need for support from parents and siblings was different. Siblings appreciate support in terms of attention and information about their sibling's disease and treatment. Parents want support in the form of information, being involved and being able to talk with healthcare professionals.
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Adaptive Styles and Coping Strategies of Youth Diagnosed with Cancer: Relationship to Well-Being, Psychosocial and Educational Adjustment, and Parents’ Adaptive StylesCorbett, Renee 31 October 2016 (has links)
Although almost 16,000 children and adolescents are diagnosed with cancer each year, the incident rates have remained stable over recent years, and mortality has decreased consistently since 1975 (American Cancer Society, 2016). With increased survivorship, research and practice in pediatric oncology has focused more on the psychosocial well-being of patients during and after treatment. With research repeatedly indicating that patients and families appear to exhibit great resilience and adjustment, and low incidences of psychosocial difficulties (e.g., Kazak, 1994, Eiser et al. 2000), some researchers have examined adaptive style as a possible construct that may help explain the predominantly positive outcomes (e.g., Phipps and Srivastava, 1997). The current study examined adaptive styles and coping strategies in youth diagnosed with cancer to determine relationships between these variables, as well as between each of these constructs and measures of subjective well-being, and psychosocial and educational adjustment. This study was also the first to examine relationships between youth and parent adaptive styles.
A total of 180 youth between 9 and 17 years old who have been diagnosed with cancer participated in this study. Each youth also had one parent who participated. Each youth participant completed a packet of self-report measures used to determine adaptive style group, coping strategy use, and subjective well-being scores. Each parent participant completed a questionnaire to provide sociodemographic information about the youth and parent, as well as information about their child’s illness and school experience. Parents also completed a packet of measures used to provide information about their child’s psychosocial adjustment and risk and to determine parent adaptive style. Data were analyzed to examine relationships between parent and youth adaptive style, group differences on measures of subjective well-being, psychosocial adjustment/risk, and academic variables, relationships between adaptive style and coping strategy use, and the predictive strength of adaptive style and coping strategies for the outcome variables.
Although the distribution of adaptive styles was similar among participants in the current study compared to those in previous studies of adaptive style for Repressive, Low Anxious, and Defensive High Anxious adaptive styles, there was a higher percentage of participants with High Anxious adaptive style in the current study. A statistically significant bidirectional relationship was found between youth and parents with a Repressive adaptive style. Results revealed significant differences between groups on measures of subjective well-being and internalizing behaviors, with Repressive adaptive displaying the highest subjective well-being and lowest internalizing behavior scores. Repressive and Low Anxious adaptive style differed significantly from the two High Anxious groups on the school scale scores, with the Repressive and Low Anxious groups having more positive outcomes on the measure. Relating to coping strategies, youth in the two High Anxious groups used more strategies all together, including both adaptive and non-adaptive strategies. However adaptive strategies were more frequently related to positive adaptive styles and outcomes, while non-adaptive strategies tended to have a stronger relationship to High Anxious adaptive style and negative outcomes. Limitations are discussed, and suggestions for future research and practical implications are offered, based on the results of the current study.
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"Câncer infantil e resiliência: investigação fenomenológica dos mecanismos de proteção na díade mãe-criança". / Childhood cancer and resilience: phenomenologic investigation of the protection mechanisms in the mother-child dyad.Teles, Shirley Santos 10 February 2006 (has links)
O presente estudo tem o objetivo de compreender o que mães e crianças percebem a partir de suas vivências com o câncer, que pôde contribuir para o enfrentamento da situação de doença, tratamento e hospitalização. O método utilizado foi o fenomenológico-existencial. O estudo foi desenvolvido no Ambulatório de Curados" do Serviço de Oncologia Pediátrica do Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto Universidade de São Paulo e contou com a colaboração de nove crianças com idades entre 6 e 11 anos, com diagnósticos diversos, e suas respectivas mães. Foi realizada uma entrevista com cada mãe a partir da questão norteadora Como foi o tratamento do seu filho?"; e com cada criança O que você lembra do seu tratamento?". A análise das entrevistas foi construída seguindo os passos propostos por Martins, Bicudo (1989) e Valle (1997), revelando-se três grandes categorias temáticas das falas das mães: a trajetória da doença e o tratamento, que coincide com o que já há descrito na literatura; condições que auxiliaram no enfrentamento do adoecimento: fé em Deus, equipe multidisciplinar, família, amigos, órgãos municipais, as outras mães, o brincar e ajuda da professora; e o momento atual, fora de tratamento. As falas das crianças também se mostraram em três grandes categorias temáticas: trajetória da doença e tratamento; situações que auxiliaram no enfrentamento da situação de adoecimento: família nuclear e estendida, equipe multidisciplinar, voluntárias e professor; e o momento atual, fora de tratamento. Para a compreensão das falas foi utilizado como referencial teórico algumas idéias do filósofo Martin Heidegger e autores que se fundamentaram nele. Pode-se concluir que frente a um mecanismo de risco, como a doença, mães e crianças se apropriaram de mecanismos de proteção, que auxiliaram no enfrentamento da doença, como a fé e o brincar, além de recursos externos como uma rede social de apoio, como a equipe, as voluntárias, a família, os amigos e as outras mães que estavam vivenciando a mesma situação. Fenomenologicamente, mães e crianças enfrentaram a situação de doença sendo-com o outro, estabelecendo relações autênticas de cuidado com os outros e entre eles (mães e filhos). E estas relações autênticas de cuidado só foram possíveis nos momentos em que ambos estavam inteiros na relação, ou seja, estavam verdadeiramente sendo-com o outro, pois só assim o indivíduo consegue percebe as reais necessidades do outro, podendo ajudar verdadeiramente. / The purpose of this research is to understand what mothers and children perceive, using their experience with cancer, which contributed for confronting the situation involving disease, treatment and hospitalization. The method that was applied is the existential-phenomenology. The research was developed in the Survivors Clinic" of the Pediatric Oncology Service of the Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto Universidade de São Paulo and rely on the collaboration of nine children form 6 to 11 years old with several diagnostics and with their respective mothers. An interview was done with each mother using the open question How was your childs treatment?" and with each child What do you remember about your treatment?". The analysis of the interviews, that was made by following the steps proposed by Martins, Bicudo (1989) and Valle (1997), exposed three main thematic categories of the mothers speech: the trajectory of the disease and the treatment, which is compatible with the literature; conditions that improve the coping with the disease faith in God, multi-disciplinary staff, family, friends, municipal entities, the other mothers, the play and the teachers help; the nowadays out of treatment. The childrens speeches also were grouped into three thematic categories: the trajectory of the disease and treatment; situations that improved the coping with the disease nuclear and extended family, multi-disciplinary staff, volunteers and teachers; the nowadays out of treatment. Some ideas of the philosopher Martin Heidegger were used as a theoretical direction. It was concluded that mothers and children faced with risk mechanism (as the disease) used protection mechanisms (as the faith and the playing beyond other resources as the social support the staff, the volunteers, the family the family and the other mothers who was facing the same situation). Phenomenologically, mothers and children coped with the disease situation being-with the others, establishing authentic relations of care with the others and among them (mothers and children). These relations was only possible when mother and children were complete in the relation, i.e., they were being-with the others truly, because this is the only way that a person can perceive the real necessities of the others and can help effectively.
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Föräldrars upplevelser och erfarenheter av att ha ett barn med cancer : En kvalitativ litteraturöversiktBjerselius, Cornelia, Pergament, Maja January 2021 (has links)
Introduktion: Varje år drabbas cirka 370 barn av cancer. Utöver det sjuka barnet kommer föräldrarna påverkas känslomässigt och socialt. Föräldrarollen till ett sjukt barn kan vara svår att hantera och känslor som stress, oro och ångest är vanligt förekommande. Även efter avslutad behandling upplever föräldrar stressymptom och det tar lång tid innan familjen återhämtat sig från den kris de gått igenom. Vårdpersonalen har en central roll i omvårdnaden av hela familjen. Syfte: Att beskriva föräldrars upplevelser och erfarenheter relaterat till vården av sitt cancersjuka barn under behandling samt upp till fem år efter avslutad behandling. Metod: En litteraturöversikt innehållande tio kvalitativa originalartiklar. Artiklarna hämtades från PubMed och CINAHL och kvalitetsgranskades med hjälp av SBU’s mall “bedömning av studier med kvalitativ metod” (Statens beredning för medicinsk och social utvärdering [SBU], 2020). Resultat: Föräldrar till cancersjuka barn upplevde psykisk-, ekonomisk- samt social påverkan under barnets cancerbehandling, samt upp till fem år efter avslutad behandling. De upplevde känslor såsom stress, ångest, oro och nedstämdhet. Deras ekonomiska situation förändrades då utgifter tillkom och arbetstider reducerades. Relationer med partner, familj samt vänner förändrades. Vårdens inverkan på föräldrarna var betydande och information samt delaktighet i sitt barns cancerbehandling ansågs värdefullt för föräldrarnas hälsa. Slutsats: När ett barn drabbas av cancer påverkas föräldrarna psykiskt, fysiskt, ekonomiskt och socialt. Vårdens bemötande och agerande kan påverka föräldrars hälsa under barnets cancerbehandling. / Introduction: Every year about 370 children get a cancer diagnosis, and the parents will be affected. The parental role after diagnosis can be difficult to handle and emotions such as stress, worry and anxiety are common. Even after treatment, many parents experience stress symptoms and it takes time before the family recovers from the crises. The healthcare staff has a central role in the care of the whole family. Objective: To describe parents' perceptions and lived experiences related to the care of their child with cancer during treatment and up to five years post treatment. Method: A literature review of ten qualitative original articles. The articles were from PubMed and CINAHL and was reviewed with the help of SBU’s template “assessment of studies with qualitative method” (Statens beredning för medicinsk och social utvärdering [SBU], 2020). Results: Parents of children with cancer experienced psychological, financial and social effects during their child’s cancer treatment and up to five years post treatment. They experienced emotions such as stress, anxiety, worry and depression. Their financial situation changed as expenses increased and working hours decreased. Relationships with partner, family and friends changed. The impact the healthcare staff had on the parents was significant. Conclusion: When a child suffers from cancer, the parents are affected psychologically, physically, financially and socially. The care and actions of the healthcare staff can affect the parents' health during the child's cancer treatment
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Fysisk aktivitet hos barn med cancer : En systematisk litteraturstudie / Physical activity in children with cancer : A systematic reviewSterner Westerberg, Filip, Ahangeri Tornberg, Sara January 2021 (has links)
Sammanfattning Bakgrund: Barn med cancer riskerar att drabbas av en rad allvarliga komplikationer till följd av sin sjukdom och cancerbehandling. Syftet med denna studie var att undersöka interventioner, utfallsmått och effekt av fysisk aktivitet hos barn med cancer genom att granska vetenskapliga artiklar Metod: Systematisk litteraturstudie. Sökning gjordes i databasen PubMed. Tio artiklar inkluderades och granskades sedan med PEDro-scale. Resultat: Interventionsformerna var aerob träning, kombinerad träning bestående av aerob träning, styrketräning, balans och rörlighet. En studie fokuserade främst på motorisk funktion. Utfallsmåtten var strukturella förändringar i hjärnan, kardiorespiratorisk förmåga, fysisk funktion, muskelstyrka, livskvalitet, bentäthet, kognition och rörelseomfång. Aerob kapacitet och muskelstyrka ökade signifikant i interventionsgrupperna jämfört med kontrollgrupperna. Plasticitet i hjärnan ökade signifikant inom grupperna. Ingen effekt på livskvalitet. Konklusion: Fysisk aktivitet som intervention hos barn med cancer har flera positiva effekter. I litteraturen råder ej konsensus gällande omfattningen av effekterna eller hur träningen ska utformas. Fler högkvalitativa studier krävs inom området. / Abstract Background: Children with cancer diseases experience long term negative effects on physical fitness and functioning after treatment. The aims of the study were to investigate interventions, outcome measures and effects of physical activity on children with cancer. Method: Systematic review. The search was conducted in the database PubMed. Ten studies were included in the study. The evidence quality of the studies was assessed with PEDro-scale. Results: The interventions used were aerobic exercise, combined training with aerobic exercises, muscle strengthening, balance and mobility. One study focused on motor function. Outcome measures were change in brain structure, cardiorespiratory fitness, physical function, muscle strength, quality of life, cognition, bone mineral density and range of motion. Cardiorespiratory fitness and muscle strength increased significantly in the intervention group compared to the control group after training. Significant increase of positive changes in brain structure within both groups. No effects were found on quality of life. Conclusion: Children with cancer diseases can benefit from physical activity and exercise training. The full extent of the effects is still unclear and more studies of high quality and with larger populations are needed. Keywords: Childhood cancer, physical activity, interventions, outcome measures, effect
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Ett känslomässigt och energikrävande arbete : Sjuksköterskors vårdande av barn med cancersjukdom / An emotional and tiring work : Nurses' care of children with cancerHärnqvist, Nora, Ulfengren Lindberg, Ida January 2022 (has links)
Bakgrund: Barncancer skiljer sig från vuxencancer. Orsaker är fortfarande okända och behandlingsprocessen är lång. Viktigt att tänka på är att barn ska fortsatt få vara barn och vara delaktiga i sin vård. Den familjecentrerade vården är en viktig del i vårdandet av sjuka barn. Sjuksköterskans ansvar ligger på att omvårdnad samt kommunikationen anpassas utefter individen. Den palliativa vården av svårt sjuka barn är en påfrestande situation för alla parter. Metod: En kvalitativ litteraturbaserad studie av tidigare genomförd forskning, där tolv vetenskapliga kvalitativa artiklar analyserades. Syfte: Syftet med denna studie var att beskriva sjuksköterskors upplevelser av att vårda barn med en cancersjukdom. Resultat: Det framkom två huvudteman och sex underteman; Arbetet med barn med cancersjukdom, betydelsen av god relation till barn med cancersjukdom, vikten av god samverkan i team, anpassad och tydlig information, fysisk och psykisk påverkan hos sjuksköterskor, upplevelser av otillräcklighet, bristen på kunskap leder till osäkerhet, emotionell påverkan hos sjuksköterskor. Konklusion: Sjuksköterskor ansåg att arbetet med barn med cancersjukdom var känsloladdat och energikrävande. Brist på teoretisk- och praktisk kunskap resulterade i sämre förutsättningar att vårda barn med cancer. Sjuksköterskor ansåg att det var viktigt med kollegialt stöd från både kollegor och anhöriga i arbetet med att vårda barn med cancersjukdom. / Background: Childhood cancer is different from adult cancer. Causes are unknown and the treatment is long. It is important to keep in mind that children should continue to be children and be involved in their care. Family-centered care is an important part of caring for sick children. The nurse´s responsibility is to ensure that nursing and communication are adapted to the individual. The Palliative care of seriously ill children is a demanding situation for all parties. Method: A qualitative literature-based study of previously conducted research in which twelve scientific qualitative articles were analyzed. Aim: The purpose of this study is to describe nurses´experiences of caring for children with cancer. Findings: Two main themes and six sub-themes emerged; The work with children with cancer, the importance of a good relationship with children with cancer, the importance of good collaboration in teams, adapted and clear information, physical and mental impact on nurses, experiences of inadequacy, lack of knowledge leads to insecurity, emotional impact on nurses. Conclusion: Nurses believe that working with children with cancer was emotionally charged and energy-intensive. Lack of theoretical and practical knowledge results in poorer conditions for caring for children with cancer. Nurses believe that it was important to have peer support from both colleagues and relatives in the work of caring for children with cancer.
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Föräldrars upplevelse av familjecentrerad omvårdnad vid cancer hos barnKjellin, Saga, Strömbeck, Klara January 2023 (has links)
Introduktion: När ett barn diagnostiseras med cancer, oavsett ålder, ökar barnets behov av föräldrarnas stöd och trygghet. Därför är föräldrarnas delaktighet i vården betydelsefull och något som bör uppmuntras och stödjas av samtlig vårdpersonal. Omvårdnaden av svårt sjuka barn ställer höga krav på sjukvården och som sjuksköterska är det viktigt att arbeta familjecentrerat för att möta och tillgodose hela familjens behov. Familjecentrerad omvårdnad innebär att varje familj ska betraktas som unik och att vården ska anpassas efter familjens behov och situation. Syfte: Syftet var att beskriva hur föräldrar till barn med cancer upplever möjligheter och hinder i den familjecentrerade omvårdnaden vid långvarig sjukhusvistelse. Metod: En litteraturöversikt med deskriptiv design baserad på 13 kvalitativa artiklar. Artiklarna kvalitetsgranskades med SBU bedömningsmall för kvalitativ metodik. Databearbetningen av litteraturstudien utfördes enligt Popenoe et al. (2021) beskrivning av allmän litteraturstudie. Resultat: I resultatanalysen framkom fyra kategorier; relation, kunskap, delaktighet och information. Under respektive kategori utformades underkategorier vilka beskrev möjligheter och hinder med familjecentrerad omvårdnad. Slutsats: Föräldrars upplevelser av möjligheter och hinder i den familjecentrerade omvårdnaden är mångfacetterade. En god vårdrelation, erfaren och kompetent vårdpersonal, främjad delaktighet och tillgodosett behov av information var möjligheter i den familjecentrerade omvårdnaden. Detta ställer krav på vårdpersonalens närvaro, engagemang samt deras förmåga att kommunicera och anpassa omvårdnaden - aspekter som annars utgjorde hinder för den familjecentrerade omvårdnaden. / Background: When a child is diagnosed with cancer, regardless of age, the child's need for parental support and security increases. Therefore, parents' participation in care is important and something that should be encouraged and supported by the staff. Nursing ill children places high demands on healthcare and as a nurse it is important to work family-centered to meet and satisfy the needs of the family. Family-centered care means that each family is considered unique, and that care must be adapted to the specific needs and situation. Aim: The aim was to describe how parents of children with cancer experience opportunities and obstacles in family-centered care during long-term hospital stay. Method: A literature review with descriptive design based on 13 qualitative articles. The articles were quality reviewed using the SBU assessment template for qualitative methodology. Data was analyzed using Popenoe et al. (2021) description of general literature review. Results: In the results analysis, four categories emerged; relationship, knowledge, participation and information. Under each category, subcategories were created which described possibilities and barriers for family-centered care. Conclusion: Parents' experiences of opportunities and obstacles in family-centered care are multifaceted. A good nursing relationship, experienced nursing staff, promoted participation and satisfied need for information were opportunities in family-centered nursing. This places demands on the care staff's presence, commitment and their ability to communicate and adapt the care - aspects that otherwise constituted obstacles for the family center regarding care.
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Education for Pediatric Oncology Nurses on Fertility Preservation of Pediatric Oncology PatientsBreit, Elyse 01 May 2014 (has links)
Although the survival rate of childhood cancer is high, nearly two thirds of these survivors experience negative long-term secondary side effects from cancer treatments. Infertility is one such side effect that can have a prominent impact on quality of life as the patient ages. It is important for nurses working with pediatric oncology patients to provide the patient and family with education about risk for infertility and fertility preservation (FP) in order to allow families to make decisions about FP before cancer treatment starts. However, pediatric oncology nurses report being uneducated about FP guidelines and are hesitant to broach this subject with families. The purpose of this HIM thesis is to review nurse perceived barriers related to educating patients and their families about the risk for infertility following cancer treatments and FP and to make recommendations for improving communication between nurses and families about FP. A search was performed using CINAHL, PreCINAHL, PsychINFO, PsychARTICLES, and Medline databases and examined peer-reviewed quantitative and qualitative research studies. Key terms used in the database searches were ped' OR child', onco' OR cancer', fert', and nurs'. Findings indicated that there were many barriers for pediatric oncology nurses, which inhibited the discussion of FP with patients and families such as lack of knowledge and resources, provider attitudes toward FP, and patient factors. Based on the findings, the researcher identified several interventions to aid pediatric oncology nurses in overcoming these barriers to FP discussion.
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School attendance following cancer diagnosis: A report based on the childhood cancer survivor studyWaldon, Eric G. 01 January 2007 (has links) (PDF)
Medical advances in the area of pediatric oncology have resulted in significantly increased rates of survivorship among children diagnosed with cancer. Accordingly, there has been increasing emphasis placed on long-term, quality-of-life issues for this population. Many agree that maintaining a typical or normalized lifestyle following diagnosis is important for positive adaptation and functioning during adulthood: many agree that, for children, school attendance is seen as an especially important developmental task. However, little attention has been paid to which variables are related to school absence and attendance following a cancer diagnosis. This study explored the extent to which illness-related and personal/environmental factors affect absence rates among a cohort of long-term survivors of pediatric cancer. Two samples ( n = 3039; n = 307) from the Childhood Cancer Survivor Study, a multi-institutional longitudinal investigation, were subjected to analysis. Findings suggest that: (1) The hypothesized set of illness-related factors do predict membership in either a high or low absence group; (2) Additional medical problems account for a significant proportion of the variance explaining school absence; (3) Several personal/environmental factors predict absence beyond that which is explained by the presence of additional medical problems; and (4) Self-esteem serves as a protective factor in terms of school absence, especially for those children receiving central nervous system treatment. Findings are discussed with regard to future research and recommendations aimed towards supporting school reentry for pediatric cancer patients.
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