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1.
Support Care Cancer ; 28(2): 809-817, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31154532

RESUMO

PURPOSE: Impaired fertility in cancer patients and survivors of reproductive age (15-45 years) may lead to psychological distress and poor mental health outcomes, and may negatively impact quality of life. Limited research has focused on the fertility experiences of those who have had access to supportive oncofertility care. This study aims to explore the fertility-care experiences and reproductive concerns of reproductive age cancer patients at the time of their cancer diagnosis who have had access to oncofertility care. METHODS: The qualitative data from a larger mixed method study is presented, comprising 30 semi-structured telephone interviews with newly diagnosed cancer patients across Australia and New Zealand, undertaken between April 2016 and April 2018. RESULTS: Interviews were undertaken with 9 male patients and 21 female patients aged between 15 and 44 years. All patients recalled a discussion about fertility and majority underwent some form of fertility preservation. Thematic analysis identified five main themes: (i) satisfaction with oncofertility care, (ii) a need for individualised treatment and support, (iii) desire for parenthood, (iv) fertility treatment can be challenging, and (v) fertility preservation provides a safety net for the future. CONCLUSIONS: Participants who access supportive oncofertility care report low emotional impact of threatened future infertility at the time of cancer diagnosis. These results suggest that such services may assist in lowering the emotional burden of potential infertility in survivors. Long-term research is needed to assess the longitudinal benefits for different models of care.


Assuntos
Preservação da Fertilidade/métodos , Preservação da Fertilidade/psicologia , Infertilidade/psicologia , Neoplasias/psicologia , Sistemas de Apoio Psicossocial , Adolescente , Adulto , Austrália , Feminino , Fertilidade/fisiologia , Humanos , Infertilidade/patologia , Masculino , Saúde Mental , Neoplasias/terapia , Nova Zelândia , Pesquisa Qualitativa , Qualidade de Vida/psicologia , Sobreviventes , Adulto Jovem
2.
Clin Genet ; 95(1): 10-22, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-29574695

RESUMO

Children and young people are increasingly likely to receive information regarding inherited health risks relevant to their genetic relatives and themselves. We reviewed the literature to determine what children and young people (21 years and younger) understand about inherited conditions and their attitudes towards genetic testing. We screened 1815 abstracts to identify 20 studies representing the perspectives of 1811 children and young people between the ages of 6 and 21 years (1498 children or young people at general population-level risk from 9 studies, 313 affected/at risk from 15 studies). Children and young people at general population-level risk demonstrated a basic understanding that disease predisposition can be inherited within families. Those affected by or at risk of genetic conditions inferred their genetic status from observable, relational characteristics within their family and the results of personal genetic testing if it had occurred, but some misunderstandings of important genetic concepts were evident. Children and young people expressed interest in and a willingness to undertake personal genetic testing, but also articulated concerns about the limitations and risks of testing. Paediatric patients require developmentally-sensitive genetic counselling and support in navigating the unique landscape of their condition.


Assuntos
Aconselhamento Genético/tendências , Doenças Genéticas Inatas/genética , Testes Genéticos/tendências , Conhecimentos, Atitudes e Prática em Saúde , Adolescente , Adulto , Criança , Bases de Dados Genéticas , Feminino , Doenças Genéticas Inatas/epidemiologia , Humanos , Masculino , Adulto Jovem
3.
Acta Oncol ; 58(2): 209-217, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30614350

RESUMO

INTRODUCTION: Understanding the cause of their cancer is important for many cancer patients. Childhood cancer survivors'/survivors' parents' beliefs about cancer etiology are understudied. We aimed to assess survivors'/parents' beliefs about what causes childhood cancer, compared with beliefs in the community. We also investigated the influence of clinical and socio-demographic characteristics on the participants' beliefs about cancer etiology. METHODS: This two-stage study investigated the participants' beliefs, by using questionnaires assessing causal attributions related to childhood cancer (stage 1) and then undertaking telephone interviews (stage 2; survivors/survivors' parents only) to get an in-depth understanding of survivors'/survivors' parents beliefs. We computed multivariable regressions to identify factors associated with the most commonly endorsed attributions: bad luck/chance, environmental factors and genetics. We analyzed interviews using thematic analysis. RESULTS: Six hundred one individuals (64.6% survivors and 35.4% survivors' parents) and 510 community comparisons (53.1% community adults, 46.9% community parents) completed the question on causal attributions. We conducted 87 in-depth interviews. Survivors/survivors' parents (73.9%) were more likely to believe that chance/bad luck caused childhood cancer than community participants (42.4%). Community participants more frequently endorsed that genetics (75.3%) and environmental factors (65.3%) played a major role in childhood cancer etiology (versus survivors' and survivors' parents: genetics 20.6%, environmental factors: 19.3%). Community participants, participants with a first language other than English, and reporting a lower quality of life were less likely to attribute bad luck as a cause of childhood cancer. Community participants, all participants with a higher income and higher education were more likely to attribute childhood cancer etiology to environmental factors. CONCLUSION: Causal attributions differed between survivors/survivors' parents and community participants. Most of the parents and survivors seem to understand that there is nothing they have done to cause the cancer. Understanding survivors' and survivors' parents' causal attributions may be crucial to address misconceptions, offer access to services and to adapt current and future health behaviors.


Assuntos
Sobreviventes de Câncer , Neoplasias/epidemiologia , Neoplasias/psicologia , Pais/psicologia , Adulto , Idade de Início , Atitude Frente a Saúde , Austrália/epidemiologia , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Causalidade , Criança , Cultura , Feminino , Comportamentos Relacionados com a Saúde , Humanos , Masculino , Nova Zelândia/epidemiologia , Qualidade de Vida , Características de Residência/estatística & dados numéricos , Inquéritos e Questionários , Adulto Jovem
4.
Support Care Cancer ; 27(6): 2087-2094, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-30229340

RESUMO

PURPOSE: Grandparents can be profoundly emotionally affected when a grandchild is diagnosed with cancer. They also often provide invaluable support for the family (e.g., caring for the sick child and/or siblings). Multigenerational family functioning may therefore change. Limited research has assessed grandparents' perspectives after their grandchild is diagnosed with cancer. In this study, we aimed to (1) assess differences in perceived family functioning among grandparents of a child with cancer and grandparents of healthy children and (2) assess the cancer-specific and demographic factors related to perceived family functioning in grandparents of a grandchild with cancer. PROCEDURE: Grandparents of a child with cancer (n = 89) and grandparents of healthy children (n = 133) completed the general functioning, communication, and problem-solving scales of the Family Assessment Device. We used multilevel models with a random intercept to detect (1) between-group differences and (2) identify factors related to perceived family functioning among grandparents with a grandchild with cancer. RESULTS: Grandparents with a grandchild with cancer reported poorer family functioning than grandparents with healthy grandchildren. Among the grandparents with a grandchild with cancer, impairments in family functioning were correlated with fewer years since diagnosis, providing care to their sick grandchild and/or siblings and living far away from the sick grandchild. CONCLUSIONS: The detrimental impact of childhood cancer likely extends beyond the immediate family members. Including grandparents in interventions-beginning at diagnosis-to reduce distress and increase cohesion for families of a child with cancer is warranted, particularly for grandparents who provide care to their sick grandchild or siblings.


Assuntos
Família/psicologia , Avós/psicologia , Neoplasias/psicologia , Idoso , Criança , Comunicação , Feminino , Humanos , Masculino , Percepção
5.
Death Stud ; 43(1): 62-69, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-29474116

RESUMO

BACKGROUND: Risk minimization in research with bereaved parents is important. However, little is known about which research methods balance the sensitivity required for bereaved research participants and the need for generalizable results. AIM: To explore parental experiences of participating in mixed method bereavement research via a pilot study. DESIGN: A convergent parallel mixed method design assessing bereaved parents' experience of research participation. SETTING/PARTICIPANTS: Eleven parents whose child was treated for cancer at The Royal Children's Hospital, Brisbane completed the questionnaire/interview being piloted (n = 8 mothers; n = 3 fathers; >6 months and <6 years bereaved). Of these, eight parents completed the pilot study evaluation questionnaire, providing feedback on their experience of participation. RESULTS: Participants acknowledged the importance of bereaved parents being central to research design and the development of bereavement programs. Sixty-three per cent (n = 5/8) of parents described completion of the questionnaire as 'not at all/a little bit' of a burden. Seventy-five per cent (n = 6/8) of parents opting into the telephone interview described participation as 'not at all/a little bit' of a burden. When considering the latest timeframes for participation in bereavement research 63% (n = 5/8) of parents indicated 'no endpoint.' Findings from the pilot study enabled important adjustments to be made to a large-scale future study. CONCLUSIONS: As a research method, pilot studies may be utilized to minimize harm and maximize the potential benefits for vulnerable research participants. A mixed method approach allows researchers to generalize findings to a broader population while also drawing on the depth of the lived experience.


Assuntos
Luto , Pais/psicologia , Projetos de Pesquisa , Sujeitos da Pesquisa/psicologia , Adulto , Atitude Frente a Morte , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Gestão de Riscos , Inquéritos e Questionários
6.
Qual Life Res ; 27(6): 1431-1443, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29372438

RESUMO

PURPOSE: Acute lymphoblastic leukemia (ALL) survivors are the largest group of childhood cancer survivors; however, their risk for late effects is high. Cancer-related late effects have the potential to compromise health-related quality of life (HRQL) long into survivorship. None of the reviews so far have focused on ALL solely, but described HRQL for all childhood cancers. We aimed to identify ALL survivors at risk for poor HRQL and identify possible risk factors. METHOD: Following PRISMA guidelines, we performed a systematic review, searching published literature in Pubmed, PsycInfo, Embase, and the Cochrane database including all publications up to December 16, 2016. Two independent reviewers (JV and ER) screened eligible articles and assessed article quality. RESULTS: We found 31 studies representing 4356 survivors and 901 proxies. Thirteen studies found worse, eight found no difference, and three better, overall HRQL scores compared with healthy controls or norms. ALL survivors typically had better overall HRQL scores than survivors of other childhood cancers. Clinical variables (e.g., treatment received) were not consistently associated with HRQL; however, experiencing worse late effects was associated with lower HRQL. Survivor and parent socio-demographic factors and psychological factors such as resilience and depression were also associated with HRQL. CONCLUSION: ALL survivors appeared to have worse or equivalent HRQL compared with controls, but better HRQL than survivors of other cancer types. However, studies reported a wide variability in HRQL and potential risk factors for poor HRQL. Measuring ALL survivors' HRQL longitudinally and comprehensively assessing potential risk factors might identify future avenues to intervene early.


Assuntos
Sobreviventes de Câncer/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Leucemia-Linfoma Linfoblástico de Células Precursoras/mortalidade , Adulto Jovem
7.
Clin Genet ; 92(6): 569-578, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-28170090

RESUMO

This review assessed parents' attitudes toward childhood genetic testing for health conditions, with a focus on perceived advantages and disadvantages. We also evaluated the factors that influence parents' attitudes toward childhood genetic testing. We searched Medline, Medline In-Process, EMBASE, PsycINFO, Social Work Abstracts and CINAHL. We screened 945 abstracts and identified 21 studies representing the views of 3934 parents. Parents reported largely positive attitudes toward childhood genetic testing across different genetic tests with varying medical utility. Parents perceived a range of advantages and disadvantages of childhood genetic testing. Childhood genetic testing was viewed by most as beneficial. Parents' education level, genetic status, sex and sociodemographic status were associated with reported attitudes. This yielded some conflicting findings, indicating the need for further research. Genetic counseling remains essential to support this population in making well-informed decisions. Targeted interventions tailored to specific families with different sociodemographic characteristics may be useful. Further research on the long-term impact of childhood genetic testing on families is warranted.


Assuntos
Aconselhamento Genético/psicologia , Doenças Genéticas Inatas/psicologia , Testes Genéticos , Conhecimentos, Atitudes e Prática em Saúde , Pais/psicologia , Adulto , Austrália , Criança , Tomada de Decisão Clínica , Feminino , Doenças Genéticas Inatas/diagnóstico , Predisposição Genética para Doença , Humanos , Masculino , Pessoa de Meia-Idade , Fatores Sexuais , Fatores Socioeconômicos
8.
Pediatr Blood Cancer ; 64(9)2017 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-28266135

RESUMO

Children with acute lymphoblastic leukemia (ALL) undergo intense anticancer treatment. We systematically reviewed 22 studies evaluating 2,073 ALL patients' health-related quality of life (HRQL) and its clinical/demographic correlates during treatment. Overall HRQL was significantly reduced on treatment. Despite HRQL improvements over time, longitudinal studies reported a proportion of children continued to experience reduced HRQL after treatment completion. We found inconsistent associations between clinical/demographic factors and HRQL outcomes. Tentative evidence emerged for worse HRQL being associated with intensive phases of chemotherapy, corticosteroid therapy, experiencing greater toxicity, older age, and female sex. Longitudinal studies are needed to identify children at-risk of reduced HRQL.


Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Feminino , Nível de Saúde , Humanos , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia
9.
Pediatr Blood Cancer ; 64(1): 163-171, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27442621

RESUMO

BACKGROUND: Grandparents can play a crucial role of providing emotional and practical support for families facing childhood cancer. Yet, many have their own healthcare needs. This controlled study systematically assesses the impact of childhood cancer on grandparents' quality of life (QOL). Our objective was to compare QOL in grandparents of children with and without cancer and to identify factors associated with grandparents' QOL. PROCEDURE: Grandparents (N = 222) completed two patient-reported outcome (PRO) measures assessing QOL: EQ-5D-5L and WHOQOL-BREF. Secondary endpoints included sleep, medications and hospitalizations. We used independent samples t-tests and multivariate linear regression to assess between-group differences and identify predictors. RESULTS: Grandparents of children with cancer (n = 89) reported significantly worse QOL than controls (n = 133) [mean WHOQOL-BREF score: 75.6 (SD = 17.6) vs. 81.5 (15.6), P = 0.007; mean EQ-5D-5L index value: 0.777 (0.20) vs. 0.874 (0.14), P < 0.001)]. They also reported more problems with anxiety and depression (47.2 vs. 21.8%, P < 0.001) and pain (64.8 vs. 49.6%, P = 0.031). Grandparents of children with cancer reported taking longer to fall asleep [mean: 30.4 min (55.6) vs. 18.2 (20.2), P = 0.011] and taking more medications in the last 4 weeks [mean: 2.9 (SD = 3.8) vs. 1.8 (SD = 2.3), P = 0.012]. Hospitalizations were comparable across groups. Grandmothers, those living in urban locations, and retired/unemployed grandparents experienced reduced QOL. CONCLUSIONS: Grandparents are significantly affected by childhood cancer. The impact appears across many domains of life and results in meaningful QOL differences. Given that four or more individuals may be affected per child, and that grandparent well-being can influence the whole family, interventions targeting at-risk grandparents are needed.


Assuntos
Avós/psicologia , Hospitalização/estatística & dados numéricos , Adesão à Medicação/psicologia , Neoplasias/terapia , Qualidade de Vida , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade/epidemiologia , Austrália/epidemiologia , Criança , Pré-Escolar , Terapia Combinada , Depressão/epidemiologia , Família , Feminino , Seguimentos , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Prevalência , Prognóstico , Inquéritos e Questionários , Adulto Jovem
10.
Artigo em Inglês | MEDLINE | ID: mdl-26776913

RESUMO

This review aimed to (1) summarise the psychosocial needs of children/adolescents (0-18 years) with a parent with cancer across the illness trajectory (diagnosis to bereavement) and (2) evaluate existing interventions for this population. Medline, CINAHL, PsychInfo, EMBASE and Social Work Abstracts were systematically searched for articles published from 1985 to 2015. Of 98 full text articles retrieved, 12 reported on children's psychosocial needs, and 12 intervention studies were identified. Each article was appraised in accordance with the Mixed Method Appraisal Tool. Three factors emerged as critical to consider in future intervention development: (1) Children need age-appropriate information about their parent's cancer; (2) Children require support communicating with parents, family members and health professionals and (3) Children need an environment where they feel comfortable sharing positive/negative emotions and can have their experiences normalised among peers. All intervention studies reported at least one positive outcome, however, only five reported significant improvements in child/family functioning based on validated quantitative measure/s. Variability in study design and quality, combined with considerable heterogeneity in intervention characteristics and outcome variables limited the conclusions, which could be drawn. Therefore, further carefully designed and scientifically evaluated interventions for children facing a parent's cancer diagnosis are clearly warranted.


Assuntos
Neoplasias/psicologia , Relações Pais-Filho , Pais/psicologia , Adaptação Psicológica , Adolescente , Luto , Criança , Pré-Escolar , Comunicação , Emoções , Relações Familiares , Feminino , Educação em Saúde , Humanos , Lactente , Recém-Nascido , Masculino , Avaliação das Necessidades , Grupo Associado , Ajustamento Social , Apoio Social , Estresse Psicológico/psicologia
11.
Child Care Health Dev ; 43(5): 645-662, 2017 09.
Artigo em Inglês | MEDLINE | ID: mdl-28543609

RESUMO

BACKGROUND: Serious chronic illness can have a detrimental effect on school attendance, participation and engagement, leaving affected students at risk of failing to meet their developmental potential. An improved understanding of factors that help to explain or mitigate this risk can help educators and health professionals deliver the most effective support. This meta-review critiqued the available evidence examining the link between six chronic illnesses (asthma, cancer, chronic kidney diseases, heart diseases, cystic fibrosis and gastrointestinal diseases) and children's and adolescents' school experiences and outcomes, as well as investigating the medical, school, psychosocial and sociodemographic factors that are linked to poorer or better school outcomes. METHODS: We searched CINAHL, Cochrane Database, EMBASE, ERIC, MEDLINE, ProQuest Theses and Dissertations, and PsycINFO (2000-2015). Systematic and narrative reviews, and meta-analyses, of original studies examining students' subjective school experiences and objective school outcomes were eligible. We used the Preferred Reporting Items for Systematic Reviews and Meta-analyses criteria to critically appraise all systematic reviews. The Grading of Recommendations Assessment, Development, and Evaluation system guided our recommendations for practice and research. RESULTS: Eighteen reviews of 172 studies including more than 40 000 students were eligible. Therefore, we chose to conduct a meta-review to provide an overview of the literature on the relationship between chronic illness and school experiences and outcomes. We also explored the associated medical, school, psychosocial and sociodemographic factors affecting the relationship between illness and school experiences and outcomes. CONCLUSION: Students with chronic illness demonstrate mixed school experiences and outcomes that are often worse than students without chronic illness. Modifiable factors, such as students' engagement with school, may be novel yet appropriate targets of educational support to ensure that these students reach their full schooling potential.


Assuntos
Sucesso Acadêmico , Doença Crônica/psicologia , Instituições Acadêmicas , Estudantes/psicologia , Absenteísmo , Adaptação Psicológica , Adolescente , Criança , Humanos , Relações Interpessoais , Serviços de Saúde Escolar , Estudantes/estatística & dados numéricos
12.
Support Care Cancer ; 24(7): 2945-52, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-26857925

RESUMO

PURPOSE: Distress screening in oncology has been widely endorsed in recent years. However, current knowledge of the impact of screening on delivery of clinical psychosocial services is limited. This study investigated the association between screening and psychosocial services in the early period following diagnosis of childhood cancer. METHODS: The Psychosocial Assessment Tool (PAT2.0) was administered by clinical social workers in two pediatric oncology centers shortly following diagnosis. Psychosocial service activity in the first 8 weeks post diagnosis was collected via social work surveys and extraction of information from hospital databases. RESULTS: PAT2.0 and psychosocial service data were obtained for 89 families with a child newly diagnosed with cancer. Distribution of PAT2.0 risk categories was consistent with previous studies (57.3 % universal, 38.2 % targeted, 4.5 % clinical). Significant, weak to moderate correlations between PAT2.0 and social workers' estimates of psychosocial risk were observed. No significant differences in the amount of psychosocial services provided to families with "universal" versus "elevated" (i.e., targeted or clinical) risk were found. Number of days in hospital was strongly and positively associated with the amount of psychosocial services families received in the first 8 weeks following diagnosis. CONCLUSIONS: Psychosocial risk, as measured by the PAT2.0, and allocation of psychosocial services were not significantly associated in the early period following diagnosis. Further investigation is required to understand if differences emerge over time when psychosocial screening is implemented clinically. Development of clinical pathways of care needs to account for patients who may predominantly be treated in the outpatient setting.


Assuntos
Neoplasias/psicologia , Pais/psicologia , Psicoterapia/métodos , Criança , Feminino , Humanos , Masculino , Inquéritos e Questionários
13.
Br J Cancer ; 112(1): 20-3, 2015 Jan 06.
Artigo em Inglês | MEDLINE | ID: mdl-25268376

RESUMO

BACKGROUND: Diagnostic delays may not have significant prognostic implications in paediatric oncology, but psychological impacts remain understudied. METHODS: Interviews exploring diagnostic experiences were conducted with childhood cancer survivors (n=19), parents (n=78) and siblings (n=15). RESULTS: Median diagnostic time was 3 weeks. Participants described a mixture of rapid diagnoses (28.9%), plus delayed appraisal intervals (that is, parent- or patient-associated diagnostic delays; 40.0%) and diagnostic intervals (that is, healthcare-associated delays; 46.7%). Families experiencing delays described guilt and anger and deleterious impacts on the family-clinician relationship. Some believed delays impacted on treatment and prognosis. CONCLUSIONS: The effect of the diagnostic experience can be considerable.


Assuntos
Neoplasias/diagnóstico , Neoplasias/psicologia , Adolescente , Adulto , Diagnóstico Tardio/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Pais/psicologia , Pediatria/métodos , Prognóstico , Sobreviventes , Adulto Jovem
14.
Support Care Cancer ; 22(3): 653-65, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24496800

RESUMO

PURPOSE: The current study sought to establish the psychometric properties of the revised Sibling Cancer Needs Instrument (SCNI) when completed by young people who have a brother or sister with cancer. METHODS: The participants were 106 young people aged between 12 and 24 who had a living brother or sister diagnosed with any type or stage of cancer in the last 5 years. They were recruited from multiple settings. The initial step in determining the dimensional structure of the questionnaire was exploratory factor analysis and further assessment followed using Rasch analysis. Construct validity and test-retest reliability (n = 17) were also assessed. RESULTS: The final SCNI has 45 items and seven domains: information; practical assistance; "time out" and recreation; feelings; support (friends and other young people); understanding from my family; and sibling relationship. There was a reasonable spread of responses across the scale for every item. Rasch analysis results suggested that overall, respondents used the scale consistently. Support for construct validity was provided by the correlations between psychological distress and the SCNI domains. The internal consistency was good to excellent; Cronbach's alphas ranged from 0.78 to 0.94. The test-retest reliability of the overall measure is 0.88. CONCLUSIONS: The SCNI is the first measure of psychosocial unmet needs which has been developed for young people who have a brother or sister with cancer. The sound psychometric properties allow the instrument to be used with confidence. The measure will provide a substantial clinical benefit in highlighting the unmet needs of this population to assist with the prioritisation of targeted supportive care services and evaluating the impact of interventions targeted at siblings.


Assuntos
Necessidades e Demandas de Serviços de Saúde , Neoplasias/psicologia , Irmãos/psicologia , Adolescente , Criança , Estudos de Coortes , Emoções , Feminino , Humanos , Masculino , Psicologia do Adolescente , Psicologia da Criança , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto Jovem
15.
Eur J Cancer Care (Engl) ; 22(4): 484-92, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-23730821

RESUMO

Starting or returning to school after intense medical treatment can be academically and socially challenging for childhood cancer survivors. This study aimed to evaluate the school (re)entry experience of children who had recently completed cancer treatment. Forty-two semi-structured telephone interviews were conducted to explore parents' perceptions of their child's (re)entry to school after completing treatment (23 mothers, 19 fathers, parent mean age 39.5 years; child mean age 7.76 years). Interviews were analysed using the framework of Miles and Huberman and emergent themes were organised using QSR NVivo8. Parents closely monitored their child's school (re)entry and fostered close relationships with their child's teacher to ensure swift communication of concerns should they arise. The most commonly reported difficulty related to aspects of peer socialisation; survivors either displayed a limited understanding of social rules such as turn taking, or related more to older children or teachers relative to their peers. Additionally, parents placed a strong emphasis on their child's overall personal development, above academic achievement alone. Improved parent, clinician and teacher awareness of the importance of continued peer socialisation during the treatment period is recommended in order to limit the ongoing ramifications this may have on school (re)entry post-treatment completion.


Assuntos
Neoplasias/psicologia , Pais/psicologia , Instituições Acadêmicas , Sobreviventes/psicologia , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Relações Interpessoais , Masculino , Neoplasias/reabilitação , Grupo Associado , Socialização , Estudantes/psicologia
16.
Eur J Cancer Care (Engl) ; 22(4): 530-9, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-23730980

RESUMO

Young people recovering from cancer may lack adequate support post-treatment, yet little is known about the types of support and information young Australians and their families need. This study investigated adolescent/young adult cancer survivors' and their families' perceptions of care and support needs after completing cancer treatment. Seventy semi-structured interviews were conducted with 19 survivors (mean age 16.1 years), 21 mothers, 15 fathers and 15 siblings. Interviews were recorded, transcribed and analysed using the conceptual framework of Miles and Huberman. Post-treatment, participants regarded medical staff positively but were reluctant to ask for their help fearing it may deflect resources away from patients still receiving treatment. Appraisals of social workers' and psychologists' support post-treatment were mixed. Formal emotional support was rarely accessed and participants reported that any additional funds should be directed to greater psychological support in this period. Participants also reported the need for additional financial support post-treatment. Clinicians need to be aware that while young people and their families may not demand support post-treatment, they may 'suffer in silence' or burden family members and friends with the responsibility of providing emotional support, though they may be experiencing distress also.


Assuntos
Família/psicologia , Neoplasias/psicologia , Apoio Social , Sobreviventes/psicologia , Adolescente , Austrália , Criança , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Satisfação do Paciente , Inquéritos e Questionários , Adulto Jovem
17.
Cancer Med ; 12(9): 10939-10949, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36999879

RESUMO

BACKGROUND: An increasing number of children diagnosed with both low- and high-risk neuroblastoma are surviving. Yet, treatment can be intensive and often multimodal, especially for high-risk neuroblastoma, resulting in significant long-term health problems. We aimed to describe neuroblastoma survivors' pediatric hospitalizations, readmissions, and their associated costs. METHOD: We conducted a population-based study of all children (<18 years) residing in New South Wales (NSW), Australia, and hospitalized with a recorded diagnosis of neuroblastoma during 2001-2020. We used linked NSW Admitted Patient Data Collection and death registration data to examine the frequency, length of stay, and readmissions following the first admission when neuroblastoma was diagnosed (i.e., the index admission), and the associated hospitalization costs by age and timing postindex admission discharge. RESULTS: In total, 300 children (64% aged <3 years) were hospitalized for neuroblastoma over the study period. The median number of readmissions and length of stay within 2 years postdischarge were 17 (interquartile range IQR: 5.5-25) and 45.5 (IQR: 10-125) days, and median cost per child was AUD$124,058 (IQR $34,217-$264,627). Following discharge from the index admission, there were 7088 readmissions (median: 20 per child, IQR: 7-29). Fifty-eight percent of readmissions occurred within 1-year postdischarge, primarily due to fever, nausea, abdominal pain, and respiratory conditions. CONCLUSION: The burden of health problems requiring hospitalization among neuroblastoma survivors results in significant associated healthcare costs, warranting further efforts to optimize health care for neuroblastoma survivors that focuses on early intervention and long-term monitoring.


Assuntos
Assistência ao Convalescente , Neuroblastoma , Criança , Humanos , Austrália , Alta do Paciente , Hospitalização , Neuroblastoma/epidemiologia , Neuroblastoma/terapia , Tempo de Internação
19.
Patient Educ Couns ; 102(12): 2270-2278, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31257099

RESUMO

OBJECTIVE: Pain and fatigue are under-researched late effects of childhood cancer and its treatment, and may be interpreted by survivors as indicating cancer recurrence. Moreover, unmet information needs for managing pain and fatigue may be related to fear of cancer recurrence. We investigated the complex relationships between perceived cancer-related pain and fatigue, unmet information needs for managing pain and fatigue, and fear of cancer recurrence. METHODS: We surveyed 404 adult survivors of any form of childhood cancer (M = 16.82 years since treatment completion). RESULTS: Many survivors reported perceived cancer-related pain (28.7%) and fatigue (40.3%), and anticipated future pain (19.3%) and fatigue (26.2%). These symptomologies were all related to unmet information needs for managing pain (18.8%) and fatigue (32.2%; all p's<.001). Survivors reporting unmet information needs for managing pain (B = .48, 95% CI = 0.19-0.76, p = .001) and fatigue (B = .32, 95% CI = 0.06-0.52, p = .015) reported higher fear of cancer recurrence than survivors reporting no information needs. CONCLUSION: Survivors often have unmet information needs for managing pain and fatigue, and these unmet needs are related to fear of cancer recurrence. PRACTICE IMPLICATIONS: Long-term follow-up clinics should assess pain and fatigue. Information provision about pain and fatigue may be an important tool to help manage fear of cancer recurrence.


Assuntos
Adultos Sobreviventes de Eventos Adversos na Infância/psicologia , Dor do Câncer/psicologia , Sobreviventes de Câncer/psicologia , Fadiga/psicologia , Medo/psicologia , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Recidiva Local de Neoplasia/psicologia , Neoplasias/patologia , Neoplasias/terapia , Qualidade de Vida/psicologia , Adulto , Ansiedade/psicologia , Austrália/epidemiologia , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Neoplasias/psicologia , Nova Zelândia/epidemiologia , Inquéritos e Questionários
20.
Semin Oncol ; 46(3): 291-303, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31221444

RESUMO

Use of precision medicine in oncology is burgeoning and can provide patients with new treatment options. However, it is not clear how precision medicine is impacting healthcare professionals (HCPs), particularly with regards to their concerns about this new approach. We therefore synthesized the existing literature on HCPs' attitudes toward cancer precision medicine. We searched four databases for relevant articles. Two reviewers screened eligible articles and extracted data. We assessed the quality of each article using the QualSyst tool. We found 22 articles, representing 4,321 HCPs (63.7% cancer specialists). HCPs held largely positive attitudes toward cancer precision medicine, including their capacity to facilitate treatment decisions and provide prognostic information. However, they also had concerns regarding costs, insurance coverage, limited HCP knowledge about precision medicine, potential misuse, difficulties accessing the tests, and delays in receiving test results. Most HCPs felt that test-related decisions should be shared between families and HCPs. HCPs intended to disclose actionable results but were less inclined to disclose negative/secondary findings. HCPs had a strong preference for genetic counselor involvement when disclosing germline findings. Most HCPs intended to use somatic and germline tests in their future practice but the extent to which pharmacogenomic tests will be used is uncertain. HCPs indicated that additional evidence supporting test utility and increased availability of treatment guidelines could facilitate the use of testing. HCPs held generally positive attitudes toward cancer precision medicine, however there were some key concerns. Addressing concerns early, devising educational support for HCPs and developing guidelines may facilitate the successful implementation of precision medicine trials in the future.


Assuntos
Atitude do Pessoal de Saúde , Neoplasias/epidemiologia , Medicina de Precisão , Mutação em Linhagem Germinativa/genética , Humanos , Neoplasias/genética , Prognóstico
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