External beam radiation therapy is often used as a form of treatment for individuals diagnosed with cancer. However, because staying completely still can often be difficult for children, sedation is often used daily to remedy the need for stillness. In this document, we introduce the development, implementation, and testing of a technology designed to teach healthy children to self-monitor and control their movements. This technology monitored a child's body movement and created a continuous feedback loop, playing a preferred movie based on the amount of body movement observed. Study 1 compares the amount of body movement observed when children were instructed to remain still (instructions alone) to access to a movie contingent on maintained low rates of movement (contingent movie). Study 2 compares the amount of body movement observed in the instructions alone condition with two other conditions: non-contingent access to a movie (non-contingent movie) and contingent movie. Study 3 compares the amount of body movement observed in the instructions alone condition to the contingent movie condition over an extended period of time. Lastly, Study 4 compares the amount of body movement observed when children have previously been taught to stay still using the technology described above across various days throughout various conditions. Generally, we found three things: a) instructions alone were insufficient to produce the level of control over motion required; b) some control over motion was established in the non-contingent movie condition relative to the instructions alone condition; and c) the combination of movies and feedback contingent on movement was necessary to gain the level of control over body motion necessary to adhere to the medical protocol.

Bakgrund: Varje år får omkring 300 barn i Sverige cancer. När ett barn får ett cancerbesked drabbas hela familjen. Tiden efter diagnos är en jobbig period för alla inblandade. Vardagen förändras och känslor av besvikelse, ilska och sorg kan tränga sig på. På sjukhuset spelar sjuksköterskan en central roll i omvårdnaden och konfronteras oundvikligen med familjen och deras känslor. Syfte: Att beskriva sjuksköterskans upplevelse av att bemöta en familj i sorg när deras barn får en cancerdiagnos. Metod: Semistrukturerade intervjuer med fyra sjuksköterskor genomfördes vid två olika sjukhus. Insamlad data sammanställdes och bearbetades utifrån en kvalitativ innehållsanalys. Resultat: Tre teman identifierades utifrån sjuksköterskans upplevelser: Sjuksköterskans roll, Familjens känslomässiga berg- och dalbana och Uppmärksamma de unika mötena. Slutsats: Cancer förknippas med döden. Däremot förekommer inte sorg bara vid död. Som sjuksköterska är det viktigt att inte gå in i familjens sorg, utan istället, genom god kommunikation och information, stärka familjen och ge dem hopp. Familjen är en viktig del i omvårdnaden av sjuka barn. Genom att involvera familjen i vårdandet skapas en helhet vilket ger familjen ett inre lugn. / Background Every year, about 300 children in Sweden are diagnosed with cancer. When a child gets a cancer diagnosis it affects the whole family and it is a difficult time for everyone involved. The everyday life changes and feelings of disappointment, anger and grief can be presented. At the hospital, the nurse plays a central role in the care and is inevitably confronted by the family and their feelings. Aim: To describe the nurse’s experience of caring for a family in grief when their child gets a cancer diagnosis. Method: Semi-structured interviews with four nurses were conducted in two different hospitals. Collected data were compiled and processed by using a qualitative content analysis. Results: Three themes were identified by the nurse's experiences: The nurses’ role, The families emotional rollercoaster, and Notice the unique meetings. Conclusion: Cancer is associated with death. Grief however, does not only apply death. As a nurse it is important to avoid going into the family's grief, but instead, through good communication and information, provide them with strength and hope. The family is an important part in the care of sick children. By involving the family, a sense of wholeness and inner calm is created.

Indiana University-Purdue University Indianapolis (IUPUI) / Purpose The experience of surgical patient decision-making for amputation, rotationplasty, or limb salvage surgery for the lower extremity was explored with osteosarcoma survivors and parents. Issues and patient concerns were examined prospectively in Facebook posts and retrospectively in personal interviews. Recommendations were sought for the development of a decision aid. Methods A qualitative inquiry was conducted in two studies: 1) a content analysis of 15 Facebook posts on the Osteosarcoma and Ewing’s Sarcoma Support Group about the surgical decision, and 2) a narrative analysis of 20 interviews with survivors and parents about their lived experience. The interview guide was informed by a knowledge translation theoretical model. In-person or video interviews included 29 parents or adolescent-young adults between the ages of 14-71 across 15 states. Results Participants were concerned about making the best decision for themselves or their child. Having little time to make the decision contributes to feeling overwhelmed and uninformed. The lack of information about options, potential limitations, prosthetic needs, and long-term functional outcomes impacts the decision-making process. Resources for finding information are limited. Shared decision-making approaches were preferred though many decisions were made by the surgeon. Patients felt unprepared for complications encountered after limb salvage. Conclusions Limb salvage surgery remains the gold standard for most providers; participants felt there was a bias on the surgeon’s part for salvage. Potential complications and uncertainties of each option were largely omitted in consultations; information about living with a prosthesis is an unmet need for decision-making. The decision affected their quality of life in ways they did not anticipate, resulting in additional decisions. Implications The findings of this study can be used in medical education for orthopedic surgeons to understand the long-term outcomes of limb salvage surgery. Patient preferences matter in the decision and patients who are involved in the decision are more satisfied if they are prepared for the unknown and potential complications. Recommendations for a decision aid include an online format, content that includes a discussion of uncertainties as well as complications of each option, patient stories for long-term outcomes, and resources for psychosocial support.

Bakgrund: Varje år drabbas ungefär 400 000 barn i världen av cancer. Cancer är en livshotande sjukdom som innebär en intensiv period av tuffa behandlingar. När ett barn får en cancerdiagnos ställs livet på sin ända och allt runt omkring tappar betydelse. I dessa stunder är det viktigt för vårdpersonal att se hela den familj som står bakom barnet.  Syfte: Syftet var att studera föräldrars upplevelser, känslor och erfarenheter av att ha ett cancersjukt barn. Metod: En litteraturöversikt med deskriptiv design innehållande originalartiklar med kvalitativ metod. Kvalitetsgranskning av studierna utfördes med SBU:s granskningsmall och resultatet analyserades med Fribergs analysmodell.   Resultat: Resultatet visade tre huvudkategorier: Psykisk och fysisk påverkan, stöd och förändringar i vardagen med totalt åtta subkategorier. Föräldrar upplevde en stor psykisk påverkan i form av chock och förnekelse som sedan övergick i reaktioner som sorg samt rädsla. För att hitta ett sätt att ta sig igenom vardagen behövde många föräldrar finna hopp och se positivt på framtiden. Praktiskt och känslomässigt stöd från vårdpersonal och närstående ansågs viktigt för att öka tryggheten. Efter barnets cancerdiagnos förändrades hela världsbilden och föräldrar fick hitta nya sätt att klara av vardagen.   Slutsats: Föräldrar påverkades både psykiskt och fysiskt. Sjuksköterskan behöver därmed ha kunskap om hur ett cancerbesked kan ge uttryck och hur man bemöter människor i kris. / Background: Each year approximately 400 000 children in the world are diagnosed with cancer. Cancer is a life-threatening disease that involves a difficult period of intensive treatments. When a child receives a cancer diagnosis, their lives are turned upside down and everything around them loses significance. In these moments it's important to consider the entire family behind the child.  Aim: The aim was to study parents' experiences and emotions of having a child affected by cancer.  Method: A literature review with descriptive design using original articles with a qualitative method. Quality review of the studies was performed using SBU´s template and the results were analyzed using Friberg´s analysis model.  Result: The result was divided in three main categories: Psychological and physical impacts, support, and changes in everyday life. These categories were split into eight subcategories. Parents experienced psychological impacts that included trauma and denial, that then turned into reactions such as grief and fear. To find a way to get through everyday life many parents needed to find hope and see the future in a positive way. Practical and emotional support from healthcare professionals and relatives was considered important to increase security. After the child's cancer diagnosis, the whole world changed, and the parents had to find new ways to cope with everyday life.   Conclusion: Parents were affected both psychologically and physically. The nurse therefore needs to have knowledge about how a cancer diagnosis can manifest and how to support people in crisis.

Syfte: Syftet med studien var att undersöka barn och unga vuxnas (5-25 år) upplevelser av att ha ett syskon med barncancer. Metod: Metoden var en allmän litteraturöversikt med deskriptiv design för datainsamling. Studien baserades på tretton vetenskapliga artiklar med kvalitativ ansats. Sökningarna efter artiklar genomfördes i databaserna PubMed och PsycInfo. De insamlade artiklarna kvalitetsgranskades utifrån mallen Bedömning av studier med kvalitativ metodik av Statens beredning för medicinsk och social utvärdering och analyserades genom en latent innehållsanalys där meningsbärande enheter identifierades. Därefter kondenserades, kodades och kategoriserades datan. Utifrån detta skapades fyra teman.  Resultat: Resultatet delades in i fyra teman; förändringar inom familjen, starka känslor, involvering och livet utanför familjen. Det visade att syskonen upplevde blandade känslor som exempelvis sorg, ilska, avundsjuka och försummelse. Det framkom även att syskonen hade olika stort behov av information och hanterade situationen på olika sätt. Vidare upplevde syskonen ett ökat ansvar och en rollförändring inom familjen i och med det sjuka barnets cancerdiagnos. Vänner och skola kunde bidra både positivt och negativt till syskonens upplevelse av situationen. Slutsats: Slutsatsen var att syskonen upplever blandade känslor efter det sjuka barnets cancerdiagnos och hanterar situationen på olika sätt. Syskonen har även olika stort behov av att få ta del av information angående det cancersjuka barnet. Det är nödvändigt att fler studier genomförs på detta område för att ytterligare öka kunskapen om syskonens upplevelser. Denna studie bidrar med en ökad kunskap kring hur sjuksköterskor bör bemöta syskonen till cancersjuka barn för att underlätta deras situation och kunna vara ett stöd för dessa. / Aim: The aim of this study was to examine the experiences of children and young adults (5-25 years) when having a sibling with cancer.  Method: The used method was a general literature study with a descriptive design for data collection. The study was based on thirteen scientific articles with a qualitative approach. The search was performed in the databases PubMed and PsycInfo. The collected articles were quality reviewed through Assessment of studies with a qualitative methodology of Governmental preparation for medical and social evaluation and were analyzed through a latent content analysis where meaning units were identified. Further, the data was condensed, coded and categorized. Based on this, four themes were established. Results: The result was categorized into four themes; changes within the family, strong emotions, involvement and life outside the family. It showed that siblings experienced mixed feelings such as grief, anger, jealousy and neglect. It also appeared that siblings had a varied need of receiving information and that they coped with the situation in different ways. Furthermore siblings experienced an increased responsibility and a change of roles within the family because of the sick child's cancer diagnosis. Friends and school could contribute with both positive and negative aspects of siblings experiences of the situation. Conclusion: The conclusion was that siblings experienced mixed feelings after the sick child's cancer diagnosis and were coping with the situation in different ways. Siblings also had a varied need of receiving information about the child with cancer. It is necessary to perform other studies in the same area to continue to increase the knowledge about siblings' experiences. This study contributes with an increased knowledge about how nurses should meet the needs of siblings of a child with cancer to help ease their situation and to support them.

Introduktion: I Sverige insjuknar cirka 350 barn per år i cancer vilket medför en ny situation och påfrestning för hela familjen. Sjuksköterskor och föräldrar har uppgett att syskon ofta blir åsidosatta vid vården av det sjuka barnet, vilket kan påverka syskonets hälsa negativt.  Syfte: Syftet var att undersöka barns och ungdomars upplevelser och känslor av att ha ett syskon med cancer. Metod: Litteraturstudie med en beskrivande design baserat på 13 kvalitativa originalartiklar. Litteratursökningen genomfördes i databaserna PubMed och CINAHL. Artiklarna granskades utifrån SBU:s granskningsmall för bedömning av studier med kvalitativ design och resultatanalysen genomfördes med hjälp av Popenoe ́s modell vid analys av kvalitativa studier. Resultat: Resultatanalysen genererade fyra kategorier:Upplevelser av en förändrad vardag, Känslan av att vara ensam i sina tankar, Sjukdomens upplevda påverkan på familjen samt Upplevelser av vården. Syskon upplevde ett flertal nya situationer och bemötande de fick anpassa sig efter, och många upplevde flera svåra känslor som ensamhet och känslan att vara bortglömd. Den nya situationen de befann sig i var en stor påfrestning som syskonen hade svårt att hantera själva. Slutsats: De huvudsakliga upplevelserna hos syskon till barn som har fått en cancerdiagnos var starka känslor som var svårhanterliga, till följd av syskonens föreställning av att vara tvungen att hantera dessa på egen hand. Detta berodde främst på upplevelsen av brist på information och stöd från föräldrar och sjukvården. Vikten av att inkludera hela familjen i vården av det sjuka barnet, och behovet av ett familjefokuserat förhållningssätt belystes. / Background: In Sweden, approximately 350 children are diagnosed with cancer each year, which brings a new situation and strain on the whole family. Nurses and parents have stated that siblings are often neglected in the care of the sick child, which can negatively affect the sibling's health. Aim: The aim of this study was to investigate childrens' and adolescents' experiences and feelings of having a sibling with cancer. Methods: Literature review with a descriptive design based on 13 qualitative original articles. The literature search was conducted in the databases PubMed and CINAHL. The articles were reviewed on the basis of SBU's review template for assessing studies with qualitative design and the results analysis was carried out using Popenoe's model when analysing qualitative studies. Results: The result analysis generated four categories: Experiences of a changed everyday life, The feeling of being alone in one's thoughts, The disease's perceived impact on the family and Experiences of care. Siblings experienced a number of new situations and treatment they had to adapt to, and many experienced several difficult feelings such as loneliness and the feeling of being forgotten. The new situation they found themselves in was also a great strain that the siblings found difficult to handle themselves. Conclusion: The main experiences of siblings of children who have been diagnosed with cancer were strong emotions that were difficult to handle, as a result of the siblings' perception of having to deal with them on their own. This was mainly due to the experience of a lack of information and support from parents and the healthcare system. The importance of including the whole family in the care of the sick child, and the need for a family-focused approach were highlighted.

No description available.

Background: Every year, hundreds of children are diagnosed with cancer. This affects the whole child's family, which means that the nurse during the child's cancer care must be there to support the whole family. The parent needs to feel involved in the child's care and have a trusting relationship with the nurse. As a parent, you have to go through a great deal of suffering, which requires the nurse to adapt her support to the needs of the parent and the child. Aim: The purpose of this study was to shed light on how a parent with a child with cancer experiences the nurse's support during and after cancer care. Method: A literature-based study was conducted. Ten qualitative articles were selected and analyzed, based on Friberg's analysis step model. This participates in three categories and a total of eight subcategories. Results: The results showed that the nurse's support was an important factor in an attempt to reduce the parent's suffering. This support could be divided into three categories: Cooperation between nurse and parent, parent's need for support and accessibility and communication. Conclusion: Pediatric cancer affects the whole child's family, and the parent is in great need of support to deal with their suffering and at the same time support their child. During their child’scancer care, the parent goes through many feelings of no longer recognizing their own child, as well as being helpless in their parenting role. By the nurse working in an empathetic and inclusive way where there is an opportunity to build meaningful and strengthening relationships between the parent and the nurse and that the parent's needs are also met, the parent's suffering can be reduced with the help of the nurse's support.

Bakgrund: I Sverige drabbas ungefär ett barn om dagen av cancer. Barncancervård är komplext och ansvaret hos sjuksköterskan är stort och kräver kunskap. Sjuksköterskor som arbetar med barncancer upplever arbetet emotionellt intensivt och är utsatta för emotionell stress. Syfte: Syftet var att beskriva sjuksköterskors känslomässiga upplevelse av att vårda barn med cancersjukdom. Metod: En kvalitativ intervjustudie med induktiv ansats användes till studien. Genom en semistrukturerad intervjuguide intervjuades 11 sjuksköterskor. Materialet analyserades genom kvalitativ innehållsanalys, vilket resulterade i fyra kategorier och sju underkategorier. Resultat: Resultatet redovisas utifrån studiens fyra kategorier: Känsla av meningsfullhet, Känsla av otillräcklighet, Behov av begriplighet och Hanterbarhet eftersträvas. Konklusion: Sjuksköterskor påverkas emotionellt både positivt och negativt av att vårda barn med cancersjukdom. Det är emotionellt krävande men också givande och glädjefyllt. Arbetet kräver erfarenhet och kompetens. Det är viktigt att uppmärksamma sjuksköterskors känslomässiga upplevelse inom barnonkologi för att de ska trivas och stanna kvar i yrket. / Background: In Sweden, approximately one child per day is diagnosed with cancer. Pediatric oncology care is complex, and the responsibility of the nurse is significant and requires expertise. Nurses working with pediatric cancer experience intense emotion and are exposed to emotional stress. Aim: The aim of the study was to describe nurses' emotional experiences of caring for children with cancer. Method: A qualitative study based on interviews with inductive design was used for the study. Eleven nurses were interviewed using a semi-structured interview guide. The material was analyzed through qualitative content analysis which resulted in four categories and seven subcategories. Result: The results are presented based on the study’s four categories: Sense of meaningfulness, Sense of inadequacy, Need for comprehensibility and Strive for manageability. Conclusion: Nurses are emotionally affected both positively and negatively by caring for children with cancer. It is emotionally demanding, but also rewarding and joyful. The work requires experience and competence. It is important to recognize nurses' emotional experiences to ensure them to thrive and stay in the profession.

Made available in DSpace on 2016-04-04T18:30:03Z (GMT). No. of bitstreams: 1 Claudiane Aparecida Guimaraes.pdf: 2983552 bytes, checksum: aba711518948193019418dfbe4debee0 (MD5) Previous issue date: 2015-02-27 / Cancer is a disease that causes great emotional imbalance, physical, social and spiritual in the patient and family, especially when it involves a child or adolescent. The family caregiver is the fundamental core of support throughout the disease process, being the key piece of the triad patient-family-health professionals. It features increased physical, emotional and social disorders as consequences of practical and emotional demands of treatment. This study describes and analyzes the coping process of family caregivers of children and adolescents with cancer, according to the Theory of Coping Motivational also assessing the impact of the disease in the family. The sample consisted of 4 mothers of children between 7 and 13 years, with cancer at different stages of the disease - [M1] diagnosis, [M2] treatment, maintenance [M3] and terminally [M4] - which were attended by a charity institution in a city named Uberaba, Minas Gerais state. Data were collected by the instruments: a) Economic Classification Criteria Brazil; b) PedsQLTM Family Impact Module [PedsQL-FIM], with 36 items, 8 dimensions; c) Interview Protocol on Coping Mothers of Children and adolescents with cancer, based on the Motivational Theory of Coping Scale-12 [MTC-12], with 34 issues; d) Responses to Stress Questionnaire - Cancer [RSQ-CA-PTC], with 57 items and e) Interview Protocol semi structured [PES], with 30 questions. Data were analyzed in qualitative and quantitative terms, making the description of cases, identifying the maternal beliefs, stressors and mother?s coping strategies [EE]. All families are impacted by the disease, differentially in relation to the stage of the disease, in descending order: M4 - M2 - M1 - M3, as shown by PedsQL-END. The dimensions with worse functioning were: Physical Functioning (M1); Daily Activities (M2); Relationships (M3) and Communication (M4). The biggest stressors are related to the difficulty of the case prognosis, lack of time and energy to devote to the family, financial difficulties, less often for M1 and more often for M4. The beliefs and values of mothers include feelings of self guilty or fatality of the disease, self-denial and self-neglect, with exclusive dedication to the child, miracle expectation, impotence and denial of death, for example. Stress responses were different according to the stages of the disease: M1- Voluntary Engagement for Secondary Control (Positive Thinking, Cognitive Restructuring and Acceptance); M2 and M3 - Voluntary Engagement for Primary Control (Problem Solution, Emotional Regulation and Emotional Expression); and M4 - Involuntary Engagement (Rumination, Intrusive Thoughts, Excitement Physiological, Emotional Excitement and Involuntary Action), according to RSQ-CA-PTC. Mothers use more adaptive coping strategies [EE] to deal with the situation, such as: Self-Confidence, Problem Solution, Search for Information and Accommodation, indicative of perceived challenge to Relationship needs, Competence and Autonomy. Other coping strategies [EE] used for the majority (N = 3) were: Search for Support, Negotiation (adaptive), Isolation and Submission (nonadaptive, with perceived threat). The data emphasize the need to assess and take care of the demands of this population, considering the stage of the disease and the psychological variables of the mother, assisting the process of coping with a major life stressors - the risk of death of the son. / C?ncer ? uma doen?a que gera grande desequil?brio emocional, f?sico, social e espiritual no paciente e na fam?lia, principalmente quando atinge uma crian?a ou adolescente. O cuidador familiar ? o n?cleo fundamental de apoio durante todo o processo da doen?a, sendo a pe?a-chave da tr?ade paciente-fam?lia-profissionais de sa?de. A ele cabe a maior sobrecarga f?sica, emocional e social, por centralizar as exig?ncias pr?ticas e emocionais do tratamento. Esta pesquisa descreveu e analisou o processo de enfrentamento de cuidadores familiares de crian?as e adolescentes com c?ncer, segundo a Teoria Motivacional do Coping, tamb?m identificando o impacto da doen?a na fam?lia. A amostra foi composta por 4 m?es de meninos de 7-13 anos, com c?ncer em fases distintas da doen?a diagn?stico [M1], tratamento [M2], manuten??o [M3] e terminalidade [M4] - os quais eram atendidos por uma institui??o beneficente de Uberaba, MG. Os dados foram coletados pelos instrumentos: a) Crit?rio de Classifica??o Econ?mica Brasil; b) PedsQLTM Family Impact Module [PedsQL-FIM], com 36 itens, em 8 dimens?es; c) Protocolo de Entrevista sobre Enfrentamento de M?es de Crian?as e Adolescentes com c?ncer, baseado na Motivational Theory of Coping Scale-12 [MTC 12], com 34 quest?es; d) Responses to Stress Questionnaire Cancer [RSQ-CA-PTC], com 57 itens; e e) Protocolo de Entrevista Semiestruturada [PES], com 30 quest?es. Os dados foram analisados qualitativos e quantitativamente, compondo a descri??o dos casos, com a identifica??o das cren?as maternas, estressores e estrat?gias de enfrentamento [EE] das m?es. Todas as fam?lias sofrem o impacto da doen?a, diferencialmente em rela??o ? fase da doen?a, em ordem decrescente: M4 M2 M1 M3, pelo PedsQL-FIM. As dimens?es com pior funcionamento foram: Funcionamento F?sico (M1); Atividades Di?rias (M2); Relacionamentos (M3) e Comunica??o (M4). Os maiores estressores relacionam-se ? dificuldade do progn?stico do caso, ? falta de tempo e energia para dedicar-se ? fam?lia e ?s dificuldades financeiras, com menor frequ?ncia para M1 e maior para M4. As cren?as e valores das m?es incluem a autoculpabiliza??o ou fatalidade da doen?a, abnega??o e autoneglig?ncia, com dedica??o exclusiva ao filho, expectativa de milagre, impot?ncia e nega??o da morte. As respostas ao estresse se diferenciaram segundo as fases da doen?a: M1- Engajamento Volunt?rio por Controle Secund?rio (Pensamento Positivo, Reestrutura??o Cognitiva e Aceita??o); M2 e M3 - Engajamento Volunt?rio por Controle Prim?rio (Resolu??o de Problemas, Regula??o Emocional e Express?o Emocional); e M4 - Engajamento Involunt?rio (Rumina??o, Pensamentos Intrusivos, Excita??o Fisiol?gica, Excita??o Emocional e A??o Involunt?ria), pelo RSQ-CA-PTC. As m?es recorrem mais EE adaptativas para lidar com a situa??o, como: Autoconfian?a, Resolu??o de problemas, Busca de informa??o e Acomoda??o, indicativas de percep??o de desafio ?s necessidades de Relacionamento, de Compet?ncia e de Autonomia. Outras EE utilizadas pela maioria (N = 3) foram: Busca de suporte, Negocia??o (adaptativas), Isolamento e Submiss?o (mal adaptativas, com percep??o de amea?a). Os dados evidenciam a necessidade de avaliar e atender ?s demandas dessa popula??o, considerando a fase da doen?a e as vari?veis psicol?gicas da m?e, auxiliando seu processo de enfrentamento de um dos maiores estressores de vida o risco de morte do pr?prio filho.