RESUMO
OBJECTIVE: Caring for a child, particularly one with special healthcare needs, is a demanding task that can lead to the experience of caregiver strain. This in turn has an effect on the caregiver's mental health, as well as on the child and his or her treatment. To enable the identification of afflicted parents, this study aims to provide a German version of the Caregiver Strain Questionnaire-Short Form 11 (CGSQ-SF11) and to examine its factor structure and psychometric properties. METHODS: Data from 698 caregivers were included in the analyses. Caregivers completed the CGSQ-SF11 along with measures of parenting stress (PSI-SF), stress (PSS-10), anxiety (GAD-7), depression (PHQ-8), family-related quality of life (FLQ), and social desirability (SES-17) as additional instruments for validation. A two-week follow-up questionnaire included only the CGSQ-SF11. Exploratory factor analysis followed by a confirmatory factor analysis was conducted for parents of children with and without special healthcare needs, separately. Further analyses examined the validity and reliability of the instrument. RESULTS: For parents of children with special healthcare needs, a three-factor structure (objective, internalized subjective, externalized subjective strain) with a second-order factor (caregiver strain) was supported. For parents of children without special healthcare needs, a similar three-factor structure was found, although the second-order factor was not supported. Measurement invariance between the two groups was not confirmed. Internal consistency, test-retest reliability, and validity were largely supported in both groups. CONCLUSIONS: The results indicate that the German version of the CGSQ SF-11 is a valid and reliable questionnaire for measuring caregiver strain.
Assuntos
Cuidadores , Psicometria , Estresse Psicológico , Humanos , Feminino , Cuidadores/psicologia , Masculino , Psicometria/instrumentação , Estresse Psicológico/psicologia , Reprodutibilidade dos Testes , Adulto , Inquéritos e Questionários/normas , Alemanha , Criança , Pessoa de Meia-Idade , Pais/psicologia , Qualidade de Vida/psicologia , Adolescente , Pré-Escolar , Análise FatorialRESUMO
The Protective Role of Self-Regulation for HRQOL of Adolescents with a Chronic Physical Health Condition A physical chronic condition comes with many challenges and negatively impacts the healthrelated quality of life (HRQOL) of those affected. Self-regulation plays an important role in successfully coping with the demands of a chronic condition. In line with a resource-oriented approach, this study aimed to investigate themoderating effect of self-regulation on the relationship between disease severity andHRQOL. For this, 498 adolescents with cystic fibrosis, juvenile idiopathic arthritis, or type-1 diabetes aged of 12-21 years (M= 15.43, SD= 2.07) were recruited through three patient registers. Subjective disease severity, self-regulation (Brief Self-Control- Scale), andHRQOL (DISABKIDSChronicGenericMeasure)were examined at two time points (T1 and T2, one year apart). Cross-sectional analysis showed significant effects of subjective disease severity and self-regulation on HRQOL. Prospective analysis, in which HRQOL at T1 was controlled for, revealed that disease severity only predicted emotion-related HRQOL at T2; selfregulation emerged as a predictor for HRQOL subscales independence, emotion, inclusion, exclusion, and treatment. A significantmoderation effect of self-regulation was found on the relationship between disease severity and HRQOL emotion. Our results highlight the positive impact of self-regulation on quality of life, specifically in the context of chronic conditions and represent a starting point for prevention and intervention approaches.
RESUMO
PURPOSE: To investigate the psychosocial burden during the COVID-19 pandemic in adolescents with type 1 diabetes and its association with metabolic control. METHODS: Prospective multicenter observational cohort study based on data from the German Diabetes Prospective Follow-up Registry. Adolescents aged 12-20 years with type 1 diabetes were asked during routine follow-up visits to complete a questionnaire on psychosocial distress and daily use of electronic media during the COVID-19 pandemic from June 2021 to November 2022. Well-being, anxiety, and depression symptoms were assessed using World Health Organization Five Well-Being Index (WHO-5), General Anxiety Disorder scale 7 (GAD-7), and Patient Health Questionnaire-9 questionnaires. The impact of mental health symptoms on metabolic control was analyzed by using multivariable linear regression models adjusted for sex, diabetes duration, treatment, socioeconomic deprivation, and immigrant background. RESULTS: Six hundred eighty eight adolescents (45.6% females) from 20 diabetes centers participated. Compared with a prepandemic cohort, WHO-5 scores were lower during the COVID-19 pandemic (estimated mean difference -9.6 [95% confidence interval -11.6; -7.6], p < .001), but GAD-7 scores were not different (estimated mean difference 0.6 [95% confidence interval -0.2; 1.5], p = .14). HbA1c was significantly positively associated with GAD-7 and Patient Health Questionnaire-9 and negatively associated with WHO-5 scores (all p < .001). Daily electronic media use was positively associated with adjusted mental health symptoms (all p < .01). DISCUSSION: Although the overall well-being of adolescents with type 1 diabetes was reduced during the later phase of the COVID-19 pandemic, the additional psychological burden was relatively low. However, mental health symptoms were associated with poorer metabolic control and higher use of electronic media.
Assuntos
Transtornos de Ansiedade , COVID-19 , Diabetes Mellitus Tipo 1 , Feminino , Adolescente , Humanos , Masculino , Pandemias , Estudos Prospectivos , Alemanha/epidemiologia , Ansiedade/epidemiologia , Depressão/epidemiologiaRESUMO
BACKGROUND: There is consistent evidence that the COVID-19 pandemic is associated with an increased psychosocial burden on children and adolescents and their parents. Relatively little is known about its particular impact on high-risk groups with chronic physical health conditions (CCs). Therefore, the primary aim of the study is to analyze the multiple impacts on health care and psychosocial well-being on these children and adolescents and their parents. METHODS: We will implement a two-stage approach. In the first step, parents and their underage children from three German patient registries for diabetes, obesity, and rheumatic diseases, are invited to fill out short questionnaires including questions about corona-specific stressors, the health care situation, and psychosocial well-being. In the next step, a more comprehensive, in-depth online survey is carried out in a smaller subsample. DISCUSSION: The study will provide insights into the multiple longer-term stressors during the COVID-19 pandemic in families with a child with a CC. The simultaneous consideration of medical and psycho-social endpoints will help to gain a deeper understanding of the complex interactions affecting family functioning, psychological well-being, and health care delivery. TRIAL REGISTRATION: German Clinical Trials Register (DRKS), no. DRKS00027974. Registered on 27th of January 2022.
Assuntos
COVID-19 , Adolescente , Criança , Humanos , Doença Crônica , Atenção à Saúde , Pandemias , Pais/psicologiaRESUMO
This study examines the access to healthcare for children and adolescents with three common chronic diseases (type-1 diabetes (T1D), obesity, or juvenile idiopathic arthritis (JIA)) within the 4th (Delta), 5th (Omicron), and beginning of the 6th (Omicron) wave (June 2021 until July 2022) of the COVID-19 pandemic in Germany in a cross-sectional study using three national patient registries. A paper-and-pencil questionnaire was given to parents of pediatric patients (<21 years) during the routine check-ups. The questionnaire contains self-constructed items assessing the frequency of healthcare appointments and cancellations, remote healthcare, and satisfaction with healthcare. In total, 905 parents participated in the T1D-sample, 175 in the obesity-sample, and 786 in the JIA-sample. In general, satisfaction with healthcare (scale: 0−10; 10 reflecting the highest satisfaction) was quite high (median values: T1D 10, JIA 10, obesity 8.5). The proportion of children and adolescents with canceled appointments was relatively small (T1D 14.1%, JIA 11.1%, obesity 20%), with a median of 1 missed appointment, respectively. Only a few parents (T1D 8.6%; obesity 13.1%; JIA 5%) reported obstacles regarding health services during the pandemic. To conclude, it seems that access to healthcare was largely preserved for children and adolescents with chronic health conditions during the COVID-19 pandemic in Germany.