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OBJECTIVE: Post-traumatic growth (PTG) describes perceived positive changes following a traumatic event. We describe (i) PTG in parents of long-term childhood cancer survivors (CCS-parents) compared to parents of similar-aged children of the general population (comparison-parents), (ii) normative data for the Swiss population, and (iii) psychological, socio-economic, and event-related characteristics associated with PTG. METHODS: CCS-parents (aged ≤16 years at diagnosis, ≥20 years old at study, registered in the Childhood Cancer Registry Switzerland (ChCR), and the Swiss population responded to a paper-based survey, including the PTG-Inventory (total score 0-105). We carried out (i) t-tests, (ii) descriptive statistics, and (iii) multilevel regression models with survivor/household as the cluster variable. RESULTS: In total, 746 CCS-parents (41.7% fathers, response-rate = 42.3%) of 494 survivors (median time since diagnosis 24 (7-40) years), 411 comparison-parents (42.8% fathers, 312 households), and 1069 individuals of the Swiss population (40.7% male, response-rate = 20.1%) participated. Mean [M] total PTG was in CCS-parents M = 52.3 versus comparison-parents M = 50.4, p = 0.078; and in the Swiss population M = 44.5). CCS-parents showed higher 'relating-to-others' (18.4 vs. 17.3, p = 0.010), 'spiritual-change' (3.3 vs. 3.0, p = 0.038) and 'appreciation-of-life' (9.3 vs. 8.4, p = 0.027) than comparison-parents, but not in 'new-possibilities' and 'personal-strength'. Female gender, older age, higher post-traumatic stress, and higher resilience were positively associated with PTG. Individuals reporting events not typically classified as traumatic also reported growth. CONCLUSIONS: Our findings highlight that mothers and fathers can experience heightened growth many years after their child's illness. Being able to sensitively foreshadow the potential for new-possibilities and personal development may help support parents in developing a sense of hope.
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Sobreviventes de Câncer , Neoplasias , Crescimento Psicológico Pós-Traumático , Transtornos de Estresse Pós-Traumáticos , Humanos , Masculino , Criança , Feminino , Adulto Jovem , Adulto , Sobreviventes de Câncer/psicologia , Adaptação Psicológica , Suíça , Neoplasias/terapia , Neoplasias/psicologia , Pais/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologiaRESUMO
INTRODUCTION: The COVID-19 pandemic forced people to give up their daily routines and adjust to new circumstances. This might have affected health-related quality of life (HRQOL). We aimed to compare HRQOL during the first COVID-19 wave in 2020 to HRQOL before the pandemic and to identify determinants of HRQOL during the pandemic in Switzerland. METHODS: We conducted a cross-sectional online survey during the pandemic (between May and July 2020; CoWELL sample; convenience sample). Before the pandemic (2015-2016), we had conducted a cross-sectional paper-based survey among a representative random sample of the Swiss general population (SGP sample). In both samples, we assessed physical and mental HRQOL (Short Form-36) and socio-demographic characteristics. In the CoWELL sample, we additionally assessed health- and COVID-19-related characteristics. Data were analysed using linear regressions. RESULTS: The CoWELL sample included 1581 participants (76% women; mean age = 43 years, SD = 14 years) and the SGP sample 1209 participants (58% women, mean age = 49 years, SD = 15 years). Adjusted for sex, age, and education, the CoWELL sample reported higher physical HRQOL (PCS, +5.8 (95% CI: 5.1, 6.6), p < 0.001) and lower mental HRQOL (MCS, -6.9 (-7.8, -6.0), p < 0.001) than the SGP sample. In the CoWELL sample, especially persons with lower health literacy, who had no support network or who have had COVID-19, reported lower HRQOL. DISCUSSION: Aspects unique to the COVID-19 pandemic affected HRQOL. Vulnerable persons such as those having had COVID-19, less support opportunities, and with lower health literacy are especially prone to impaired HRQOL during the COVID-19 pandemic.
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COVID-19 , Qualidade de Vida , Humanos , Feminino , Adulto , Pessoa de Meia-Idade , Masculino , Qualidade de Vida/psicologia , COVID-19/epidemiologia , Estudos Transversais , Suíça/epidemiologia , Pandemias , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To evaluate the acceptability and safety of educational videos utilising visual storytelling to provide information about the cardiac ICU and post-operative care to parents. Videos were designed to educate, further encourage parents to engage in their child's cardiac care, and address common sources of distress. STUDY DESIGN: Two educational videos and survey were sent to 29 families of children previously admitted to the cardiac ICU (April 2020-March 2021). Views regarding information quality, quantity, format, and relevance were assessed, as were parents' emotional responses. Quantitative thresholds for safety and acceptability were set a priori. An inductive approach to content analysis was applied to identify themes in qualitative data. RESULTS: Sixteen parents participated (response rate: 55%). All acceptability and safety thresholds were met; 92% of parents rated the videos as helpful and 85% were "very" or "extremely likely" to recommend them to other families of children with CHD. No participants reported significant distress after viewing the videos. Expressions of parental engagement with their child's care team were common (92%). In qualitative responses, parents perceived the videos as potentially helpful in reducing distress if viewed prior to cardiac ICU admission. CONCLUSION: Visual storytelling to orient parents to the cardiac ICU and address common stressors was found to be safe and acceptable when tested with parents of children previously admitted to the cardiac ICU. Further prospective studies are needed to test intervention effects when videos are viewed before or during cardiac ICU admission, especially for mitigating anxiety and traumatic stress associated with admission.
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PURPOSE: Following their child's cancer diagnosis, parents must rapidly familiarize themselves with cancer-specific information and the health-care setting. Theory-driven research is needed to understand and address parents' difficulties when interacting with health-care professionals (HCPs). We examined parents' health-care experiences during and after the child's cancer treatment. METHODS: We recruited parents of children/adolescents (aged < 18 years) who had recently completed cancer treatment with curative intent from eight Australian hospitals. We conducted in-depth interviews using the psychosocial adjustment to illness scale while recruiting for the "CASCADE" survivorship intervention. We used grounded theory to explore parents' health-care experiences. RESULTS: Fifty-two mothers and six fathers of survivors (mean age at diagnosis = 5.1 years, time since treatment = 1.9 years) participated. Parents' experiences were characterized by (1) positive and negative interactions, (2) attitudes towards health care and HCPs, (3) trust and mistrust in the doctor-parent relationship, and (4) parents' engagement in care. Parents built trust with HCPs, who seemed approachable and personable. Although parents' experience was overall very positive, nearly half of parents reported negative interactions and mistrust. Parents rationalized negative experiences as caused by constraints in the health-care setting. Most parents felt support ended prematurely. We propose a new model accounting for these experiences and identifying potential underlying mechanisms. CONCLUSIONS: Depending on their degree of trust, parents followed recommendations more closely (high trust) or focused on being advocates for their child (low trust). Parents minimized the impact of negative HCP interactions through internal, rationalizing processes. Our findings demonstrate parents' flexibility in acting as a dynamic buffer between HCP-interactions and their child.
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Neoplasias/psicologia , Relações Profissional-Família/ética , Adulto , Pré-Escolar , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto JovemRESUMO
OBJECTIVE: The intensive and long-lasting experience of childhood cancer is a tremendous stressor for the parental relationship. We aimed to (1) compare civil status and partner relationship of parents of long-term childhood cancer survivors with population-based comparisons, (2) identify cancer-related characteristics associated with not being married, and (3) evaluate the quality of the partner relationship. METHODS: We sent questionnaires to parents of survivors aged ≤16 years at diagnosis and ≥20 years at study. Population-based comparisons were derived from a random sample of the general population (≥1 child aged ≥20 years) and standardized by sociodemographic characteristics of survivor parents. We used logistic regression to identify cancer-related characteristics associated with not being married. The quality of the partner relationship was evaluated using the relationship-specific attachment scale for adults assessing the dimensions security (secure-fearful) and dependency (dependent-independent). RESULTS: A total of 784 parents (58.9% mothers) of 512 survivors (response rate: 44.0%) and 471 comparison parents completed the questionnaire. Parents of survivors were less often divorced/separated (9.0% vs 17.5%, P < 0.001) and more often in a partner relationship (89.9% vs 85.0%, P = 0.010) than comparisons. Not being married was not associated with cancer-related characteristics. Parents of survivors reported similar security (P = 0.444) but higher dependency (P = 0.032) within the partner relationship than comparisons. In both populations, fathers indicated higher security and dependency than mothers. CONCLUSIONS: Long after the diagnosis of cancer in their child, parents' relationship appears similar as in parents of the general population. The increased dependency reported by parents of survivors suggests that they managed their child's disease as a team.
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Sobreviventes de Câncer/psicologia , Neoplasias/psicologia , Relações Pais-Filho , Pais/psicologia , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/enfermagem , Qualidade de Vida , Adulto JovemRESUMO
BACKGROUND: Childhood cancer affects the whole family and can have a lasting impact on parents of childhood cancer survivors (CCS). We aimed to (1) describe parents' perspective of currently experienced disadvantages and of their support needs during treatment, after treatment, and today; (2) identify characteristics associated with disadvantages and support needs; and (3) describe the use of existing support services. PROCEDURE: In this population-based study, we identified parents of CCS (diagnosed ≤16 years of age, ≥5 years since diagnosis, aged ≥20 years at study) through the Swiss Childhood Cancer Registry (SCCR). Parents completed a questionnaire on perceived disadvantages (e.g., job-related, financial, etc.), support needs (e.g., job-related, financial, etc.), and socio-demographics. Cancer-related characteristics were available from the SCCR. We used multivariable multilevel logistic regression to identify characteristics associated with disadvantages and support needs. RESULTS: An average of 24 years after diagnosis, one-fifth of parents (n = 59/308; 19.2%) reported disadvantages, and 7.1% reported support needs. Many parents had desired more support during (66.9%) or after (34.4%) their child's cancer treatment. Parents whose child experienced late effects (OR = 26.6; 95% CI, 2.9-241.0) or was dependent on parents (OR = 10.6; 95% CI, 2.1-53.7) reported greater current need for more support. Almost half of parents (43.5%) reported having used existing support services. CONCLUSIONS: Many parents need more support during and after active treatment of their child's cancer, and some experience support needs and disadvantages long into survivorship. Better promotion of existing services for parental and familial support and setting up new services, where needed, may help parents in the long term.
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Sobreviventes de Câncer/psicologia , Necessidades e Demandas de Serviços de Saúde , Serviços de Informação/estatística & dados numéricos , Avaliação das Necessidades/normas , Neoplasias/psicologia , Pais/educação , Pais/psicologia , Adulto , Criança , Feminino , Seguimentos , Humanos , Serviços de Informação/normas , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/terapia , Prognóstico , Qualidade de Vida , Inquéritos e Questionários , Taxa de Sobrevida , Adulto JovemRESUMO
PURPOSE: Health-related quality of life (HRQOL) is an important concept to describe well-being of the general population and persons with diseases. The short form-36 (SF-36) is a widely used questionnaire assessing self-reported HRQOL in eight health domains. The aims of this study were to provide normative data for the SF-36 version 2 (SF-36v2) for all language regions in Switzerland and weighting coefficients to calculate two summary measures for physical and mental health. METHODS: A random representative (regarding age, sex, and language region) sample of people living in Switzerland aged 18-75 years in 2015 was eligible for our questionnaire survey. We calculated the eight health domain subscales for different subsamples based on sociodemographic characteristics. Two summary measures for physical and mental health were derived using data-based factor score coefficients and calculated for the subsamples. RESULTS: A total of 1209 persons completed the SF-36v2 (mean age 48.7 years, 58.1% women). The SF-36v2 was valid and reliable in Switzerland. Physical health was better in men (p = 0.012) and younger persons (p < 0.001). Mental health was better in men (p < 0.001) and older persons (p < 0.001). Regarding regional differences, we found better physical (p = 0.002) and mental (p < 0.001) health in German speaking persons compared to French and Italian speaking persons. CONCLUSIONS: This paper presents the first SF-36v2 normative data for Switzerland, which are based on a recent study in a representative sample. Our normative data and weighting coefficients will enable future studies to compare HRQOL assessed by the SF-36 in healthy and diseased persons to a representative Swiss sample.
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Inquéritos Epidemiológicos/métodos , Idioma , Saúde Mental/estatística & dados numéricos , Qualidade de Vida/psicologia , Inquéritos e Questionários , Adolescente , Adulto , Idoso , Etnicidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Autorrelato , Suíça , Adulto JovemRESUMO
Poor body image may be one driver of distress for adolescent and young adults (AYAs) after cancer. We explored physical appearance changes reported by AYA cancer survivors to understand impacts on body image, distress, lifestyle and health behaviours. We recruited AYAs (15-25 years) who had completed cancer treatment. Using semi-structured interviews, we asked participants about appearance changes resulting from their cancer. We used iterative thematic analyses to explain experiences. Forty-three participants (51% male, mean age = 21 years) completed an interview. Two key themes emerged. Participants discussed physical appearance changes and psychosocial impacts including appraisal of their changed appearance. Thirty-eight participants (n = 38/43) reported that their cancer and/or treatment changed their appearance (most commonly: alopecia [n = 15/43], scarring [n = 14/43] and weight gain [n = 11/43]). Ten participants (n = 10/43) acknowledged body dissatisfaction. Other impacts included feeling a loss of identity, not being recognised by peers and feeling helpless to change. Our results have translational significance for AYA care. Body image concerns should be considered a potential barrier to successful reintegration post-treatment. AYAs may benefit from familial and peer support, healthy lifestyle interventions and clinical environments catering to appearance-related sensitivities.
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Imagem Corporal/psicologia , Sobreviventes de Câncer/psicologia , Neoplasias/psicologia , Aparência Física , Adolescente , Adulto , Austrália , Emoções , Feminino , Humanos , Masculino , Neoplasias/terapia , Sobrepeso/psicologia , Adulto JovemRESUMO
OBJECTIVE: Childhood cancer survivors are at high risk for late effects. Regular attendance to long-term follow-up care is recommended and helps monitoring survivors' health. Using the theory of planned behavior, we aimed to (1) investigate the predictors of the intention to attend follow-up care, and (2) examine the associations between perceived control and behavioral intention with actual follow-up care attendance in Swiss childhood cancer survivors. METHODS: We conducted a questionnaire survey in Swiss childhood cancer survivors (diagnosed with cancer aged <16 years between 1990 and 2005; ≥5 years since diagnosis). We assessed theory of planned behavior-related predictors (attitude, subjective norm, perceived control), intention to attend follow-up care, and actual attendance. We applied structural equation modeling to investigate predictors of intention, and logistic regression models to study the association between intention and actual attendance. RESULTS: Of 299 responders (166 [55.5%] females), 145 (48.5%) reported attending follow-up care. We found that subjective norm, ie, survivors' perceived social pressure and support (coef = 0.90, P < 0.001), predicted the intention to attend follow-up; attitude and perceived control did not. Perceived control (OR = 1.58, 95%CI:1.04-2.41) and intention to attend follow-up (OR = 6.43, 95%CI:4.21-9.81) were positively associated with attendance. CONCLUSIONS: To increase attendance, an effort should be made to sensitize partners, friends, parents, and health care professionals on their important role in supporting survivors regarding follow-up care. Additionally, interventions promoting personal control over the follow-up attendance might further increase regular attendance.
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Assistência ao Convalescente/métodos , Sobreviventes de Câncer/psicologia , Neoplasias/terapia , Cooperação do Paciente/psicologia , Adolescente , Adulto , Atitude Frente a Saúde , Criança , Feminino , Humanos , Intenção , Masculino , Neoplasias/psicologia , Pais/psicologia , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Taking care of children diagnosed with cancer affects parents' professional life and may place the family at risk-of-poverty. We aimed to (i) compare the household income and risk-of-poverty of parents of childhood cancer survivors (CCS) to parents of the general population, and (ii) identify sociodemographic and cancer-related factors associated with risk-of-poverty. METHODS: As part of the Swiss Childhood Cancer Survivor Study, we sent a questionnaire to parents of CCS aged 5-15 years, who survived ≥5 years after diagnosis. Information on parents of the general population came from the Swiss Household Panel (parents with ≥1 child aged 5-15 years). Risk-of-poverty was defined as having a monthly household income of <4,500 Swiss Francs (CHF) for single parents and <6,000 CHF for parent-couples. We used logistic regression to identify factors associated with risk-of-poverty. RESULTS: We included parents of 383 CCS and 769 control parent households. Parent-couples of CCS had a lower household income (Ptrend < 0.001) and were at higher risk-of-poverty (30.4% vs. 19.3%, P = 0.001) compared to control parent-couples. Household income and risk-of-poverty of single parents of CCS was similar to control single parents. Parents of CCS were at higher risk-of-poverty if they had only standard education (ORmother = 3.77 [where OR is odds ratio], confidence interval [CI]: 1.61-8.82; ORfather = 8.59, CI: 4.16-17.72) and were from the German language region (OR = 1.99, CI: 1.13-3.50). We found no cancer-related risk factors. CONCLUSION: Parents of long-term CCS reported lower household income and higher risk-of-poverty than control parents. Support strategies may be developed to mitigate parents' risk-of-poverty in the long term, particularly among parents with lower education.
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Efeitos Psicossociais da Doença , Neoplasias/economia , Pais , Pobreza/economia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Fatores Socioeconômicos , Inquéritos e Questionários , Sobreviventes , SuíçaRESUMO
Psychological distress is an important and frequent health problem. The Brief Symptom Inventory (BSI) allows screening for psychological distress in clinical, general and research populations. We aimed to provide normative data for the BSI and the BSI-18 for the Swiss general population: We 1) present psychometric properties, 2) develop a Swiss T-standardization and validate it using a clinical sample, 3) describe psychological distress in the Swiss general population and the clinical sample, and 4) compare the means and T-standardized scores of the Swiss general population to different German norm populations. Using a cross-sectional study design, we invited a representative sample of the Swiss general population aged 18-75 years to the study. A sample of psychotherapy outpatients had competed the BSI before start of their therapy. We calculated scores for the nine scales of the BSI (three of them constitute the BSI-18), the T-standardization and the following BSI indices: Global Severity Index (GSI), Positive Symptom Total (PST), Positive Symptom Distress Index (PSDI), and Caseness (reaching T≥63 on the GSI or T≥63 on at least two of the scales). A total of 1238 general population participants completed the BSI (41.8% male; mean age 48.9 years). The BSI had good psychometric properties. The Swiss T-standardization showed good validity when applied in the clinical sample. Females reached a significantly higher GSI score than males (p<0.001). Older participants (p = 0.026), those with higher education (p <0.001), and those employed or retired (p<0.001) reached lower scores than participants aged 18-25 years, those with compulsory schooling, and unemployed participants, respectively. A total of 18.1% (CI: 16.0-20.5) participants of the general population and 75.2% (CI: 73.7-76.7) of the psychotherapy patients were considered cases with psychological distress. Our study presents detailed normative data for the BSI and the BSI-18 based on a representative sample of the Swiss general population. This information will be helpful for clinical applications and research in the Swiss and international context.
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Angústia Psicológica , Psicometria , Humanos , Pessoa de Meia-Idade , Adulto , Masculino , Feminino , Suíça/epidemiologia , Idoso , Adolescente , Psicometria/métodos , Estudos Transversais , Adulto Jovem , Estresse Psicológico/diagnóstico , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Reducing low-value care (LVC) is crucial to improve the quality of patient care while increasing the efficient use of scarce healthcare resources. Recently, strategies to de-implement LVC have been mapped against the Expert Recommendation for Implementing Change (ERIC) compilation of strategies. However, such strategies' effectiveness across different healthcare practices has not been addressed. This overview of systematic reviews aimed to investigate the effectiveness of de-implementation initiatives and specific ERIC strategy clusters. METHODS: We searched MEDLINE (Ovid), Epistemonikos.org and Scopus (Elsevier) from 1 January 2010 to 17 April 2023 and used additional search strategies to identify relevant systematic reviews (SRs). Two reviewers independently screened abstracts and full texts against a priori-defined criteria, assessed the SR quality and extracted pre-specified data. We created harvest plots to display the results. RESULTS: Of 46 included SRs, 27 focused on drug treatments, such as antibiotics or opioids, twelve on laboratory tests or diagnostic imaging and seven on other healthcare practices. In categorising de-implementation strategies, SR authors applied different techniques: creating self-developed strategies (n = 12), focussing on specific de-implementation strategies (n = 14) and using published taxonomies (n = 12). Overall, 15 SRs provided evidence for the effectiveness of de-implementation interventions to reduce antibiotic and opioid utilisation. Reduced utilisation, albeit inconsistently significant, was documented in the use of antipsychotics and benzodiazepines, as well as in laboratory tests and diagnostic imaging. Strategies within the adapt and tailor to context, develop stakeholder interrelationships, and change infrastructure and workflow ERIC clusters led to a consistent reduction in LVC practices. CONCLUSION: De-implementation initiatives were effective in reducing medication usage, and inconsistent significant reductions were observed for LVC laboratory tests and imaging. Notably, de-implementation clusters such as change infrastructure and workflow and develop stakeholder interrelationships emerged as the most encouraging avenues. Additionally, we provided suggestions to enhance SR quality, emphasising adherence to guidelines for synthesising complex interventions, prioritising appropriateness of care outcomes, documenting the development process of de-implementation initiatives and ensuring consistent reporting of applied de-implementation strategies. REGISTRATION: OSF Open Science Framework 5ruzw.
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Revisões Sistemáticas como Assunto , Humanos , Atenção à Saúde/normas , Atenção à Saúde/organização & administração , Ciência da Implementação , Melhoria de Qualidade/organização & administração , Qualidade da Assistência à Saúde/normas , Qualidade da Assistência à Saúde/organização & administraçãoRESUMO
Objectives: To describe COVID-19 information-seeking behavior (CISB) during the first stage of the pandemic in Switzerland and identify its determinants. Methods: We conducted an online cross-sectional survey (4 May to 6 July 2020). Participants self-reported their CISB (information sources and frequency), personal COVID-19 situation (e.g., perception about having had COVID-19), sociodemographic information, and completed validated measures of health literacy, and worry and anxiety. Data were analyzed using descriptive statistics and logistic regressions. Results: We included 1,505 participants (24.7% male; mean age = 43.0 years, SD = 13.9). Most participants reported searching for information daily (n = 1,023, 68.0%) and referring to multiple information sources (mean 3.7, SD = 1.5). Commonly used sources were official websites (n = 1,129, 75.0%) and newspapers (n = 997, 66.2%). Participants with higher health literacy were more likely to seek information daily and use online resources, but less likely to use personal networks than those with lower health literacy. We did not find any association between CISB and worry and anxiety. Conclusion: More opportunities for personal dialogue and education about reliable online information resources should be encouraged to optimize the CISB of groups with lower health literacy.
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COVID-19 , Letramento em Saúde , Adulto , Ansiedade/epidemiologia , COVID-19/epidemiologia , Estudos Transversais , Feminino , Humanos , Comportamento de Busca de Informação , Masculino , Pandemias , Inquéritos e Questionários , Suíça/epidemiologiaRESUMO
Objectives: Despite established principles of perinatal palliative care (PnPC), implementation into practice has shown inconsistencies. The aim of this study was to assess PnPC services, examine healthcare professionals (HCPs) awareness and availability of PnPC guidelines, and describe HCPs satisfaction with PC and guidelines. Material and Methods: A nationwide survey was conducted in Swiss tertiary NICUs between April-November 2019. Data were examined by descriptive statistics and linear regression models. Results: Overall response rate was 54% (65% physicians; 49% nurses; 72% psychosocial staff). Half of professionals (50%) received education in PC during their medical/nursing school, whereas 36% indicated they obtained further training in PnPC at their center. PnPC guidelines were available in 4/9 centers, with 68% HCPs being aware of the guideline. Professionals who had access to a PnPC team (P = 0.001) or were part of the nursing (P = 0.003) or psychosocial staff (P = 0.001) were more likely aware of having a guideline. Twenty-eight percent indicated being satisfied with PC in their center. Professionals with guideline awareness (P = 0.025), further training (P = 0.001), and access to a PnPC team (P < 0.001) were more likely to be satisfied, whereas HCPs with a nursing background (P < 0.001) were more likely to be dissatisfied. A majority expressed the need for a PnPC guideline (80%) and further PC training (94%). Conclusion: This study reveals lacking PnPC guidelines and divergences regarding onsite opportunities for continued training across Swiss level III NICUs. Extending PnPC guidelines and training services to all centers can help bridge the barriers created by fragmented practice.
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BACKGROUND: We describe post-traumatic stress symptoms (PTSS) and post-traumatic stress disorder (PTSD) in parents of long-term childhood cancer survivors (CCS-parents) and compare them to parents of similar-aged children (comparison-parents) of the Swiss general population (SGP). We compare type of reported stressful event, prevalence of PTSS and PTSD, and psychosocial and cancer-related characteristics associated with PTSS. We further describe the respective normative data for the SGP. METHODS: We conducted a nationwide cross-sectional questionnaire survey in a population-based sample of long-term CCS-parents (survivors aged ≤16 years at diagnosis, ≥20 years at study, >5 years post-diagnosis) and in the SGP. Using the Impact of Event Scale-Revised, we measured PTSS regarding the most stressful event experienced, and computed probable cases of PTSD. RESULTS: Participants included 663 CCS-parents (39.4% fathers) and 1035 individuals of the SGP (40.0% male), of which we identified 391 comparison-parents (41.2% fathers). Illness was most often indicated as stressful event (CCS-parents: 49.5%, comparison-parents: 27.6%, SGP: 25.3%). Prevalence of PTSS and PTSD (CCS-parents: 4.8%, comparison-parents: 6.7%, SGP: 5.6%) did not significantly differ. Lower education was associated with higher intrusion, avoidance, and hyperarousal in all samples (all P ≤ .003). Parents of children with a chronic illness reported higher intrusion (all P ≤ .004). We found no associations with cancer-related characteristics. CONCLUSIONS: No increased risk for PTSS or PTSD was found among CCS-parents. Individuals with lower education and those with a chronically ill child might benefit from additional support to help manage and resolve the stress symptoms in the long term.
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PURPOSE: The aim was to study follow-up care attendance in adolescent and young adult (AYA) cancer survivors to investigate: (1) correlates of the intention to attend follow-up care and (2) whether the intention is associated with the actual attendance, applying the theory of planned behavior (TPB). METHODS: We conducted a questionnaire survey in AYA cancer survivors diagnosed 1990-2005 at age 16-25 years, registered in the Cancer Registry Zurich and Zug, Switzerland, who had survived at least 5 years. Structural equation modeling was applied to investigate TPB-related correlates (attitudes, subjective norms, and perceived behavioral control) of intention to attend follow-up care. Logistic regression analysis was used to study the association between intention and actual attendance. RESULTS: We included 160 AYA cancer survivors in the study (mean age at study: 34.0 years, mean age at diagnosis: 21.6 years, 98 [61.3%] male). Positive attitudes toward follow-up care (coefficient = 0.32, 95% confidence interval [CI]: 0.05 to 0.60) and supportive subjective norms (coefficient = 0.59, 95% CI: 0.41 to 0.78) were associated with higher intention to attend follow-up care. Perceived behavioral control was not associated with intention to attend (coefficient = -0.13, 95% CI: -0.36 to 0.10), but with actual attendance (odds ratio [OR] = 4.55, 95% CI: 1.83 to 11.31). Higher intention was associated with actual follow-up care attendance (OR = 14.29, 95% CI: 5.80 to 35.21). CONCLUSION: Positive attitudes and supportive social norms were associated with higher intention to attend follow-up care, and higher intention was associated with actual follow-up care attendance. Increasing awareness of the importance and benefits of follow-up care not only among survivors but also family, friends and healthcare professionals may help increase follow-up care attendance among AYA cancer survivors.
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Assistência ao Convalescente/métodos , Sobreviventes de Câncer/psicologia , Neoplasias/terapia , Técnicas de Planejamento , Adolescente , Adulto , Feminino , Humanos , Masculino , Neoplasias/mortalidade , Adulto JovemRESUMO
QUESTIONS UNDER STUDY: Teenage and young adult (TYA) cancer patients are faced with the diagnosis during a challenging period of psychosocial development that may affect social outcomes in the long term. Therefore, we aimed to: (1) determine differences in social outcomes between long-term TYA cancer survivors and healthy controls and (2) identify factors associated with adverse social outcomes. METHODS: We sent a questionnaire to TYA cancer survivors (aged 16-25 years at diagnosis, ï³5 years after diagnosis) registered in the Cancer Registry Zurich and Zug. Information on controls was obtained from the Swiss Health Survey 2012. We assessed educational achievement, employment status, marital status and life partnership (survivors only), and compared these outcomes between survivors and controls. We used logistic regression to identify sociodemographic and cancer-related factors associated with social outcomes. RESULTS: We included 160 TYA cancer survivors and 999 controls. Educational achievement of survivors differed significantly from controls (p = 0.012): more survivors than controls reported upper secondary education (33 vs 27%) and fewer survivors reported university education (12 vs 21%). No significant differences were found for employment (p = 0.515) and marital status (p = 0.357). The majority of survivors (91%) and controls (90%) were employed, and 37% of survivors were married, compared with 41% of controls. There were no cancer-related factors associated with having only basic education. Unemployment was associated with younger age at diagnosis (odds ratio [OR] 5.3, 95% confidence interval [CI] 1.3-30.8) and self-reported late effects (OR 4.7, 95% CI 1.3-19.5). Survivors of younger age at diagnosis were more likely not to be married (OR 2.7, 95% CI 1.3-5.7) and not to have a life partner (OR 2.3, 95% CI 1.0-5.2). CONCLUSIONS: Our findings indicate that TYA cancer survivors completed applied higher education rather than a university education. Future studies including larger samples of TYA cancer survivors are needed to validate our findings and to explore the reasons for and satisfaction with the observed educational pathway.