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Psychosocial profile in portuguese adolescents with chronic disease attending an outpatient department in a hospital setting
Publication . Santos, Teresa; Matos, MG; Marques, Adilson; Simões, Celeste; Leal, Isabel; Machado, Maria do Céu
Living with a chronic disease (CD) in adolescence involves new multifaceted challenges. This study aims to conduct a psychosocial characterization of a group of adolescents with chronic diseases in a hospital setting and to compare such dimensions for the total group and for different diseases. A cross-sectional study included 135 adolescents with chronic diseases (51.9% boys; 48.1% girls), having an average age of 14±1.5 years (SD=1.5) and attending a paediatric outpatient department in a hospital setting. Statistically significant differences were found among the different chronic diseases for the variables self-regulation (adolescents with diabetes had significantly higher competencies) and multiple psychosomatic symptoms (adolescents with neurologic diseases reported significantly more complaints). Boys presented both better health-related quality of life and psychosomatic health when compared to girls. No statistically significant differences were observed for health-related quality of life, psychosomatic health, resilience, and social support. These findings bring important suggestions especially while planning interventions, which must take into account the promotion of a healthy psychosocial development, through an inclusive perspective (covering different chronic diseases), that take into consideration specific and gendered approaches. Such suggestions might help healthcare professionals to better plan interventions in order to increase their effectiveness.
(Health-related) quality of life and psychosocial factors in adolescents with chronic disease: a systematic literature review
Publication . Santos, Teresa; Matos, MG; Simões, Celeste; Leal, Isabel; Machado, Maria do Céu
Background: Research on living with a chronic disease (CD) in adolescence is increasing. However, studies on
the relevance of psychosocial factors are still needed. The present review, focuses on the impact of living with a
CD in adolescence on on quality of life (QoL), health-related quality of life (HRQoL) and psychosocial factors.
Methods: A literature review of articles identified through PubMed, PsycINFO and PsycARTICLES (these last
two ones comprise the Ebsco Host platform) and original peer-reviewed research papers, published between
2010 and 2015, with no restrictions regarding the format/source of interventions, randomized controlled trials
(RCTs) or types of comparisons were included.
Results: Eighteen papers met the inclusion criteria and contradictory results were found: the majority showed
a significantly higher risk of impairment on QoL/HRQoL and psychosocial factors, whereas others reported
a significantly lower risk of impairment (highlighting possible protective factors), or no significant differences.
Heterogeneity in the assessment procedures and substantial difficulties in considering adolescence as a single
and independent age group, were also noted.
Conclusion: The higher risk of impairment and the heterogeneity observed between cohorts, reinforce the
need to work towards consensual procedures, which allow for more accurate comparisons among studies. Additionally, it conveys the challenge to find more effective interventions. Furthermore, it is highly suggested to
routinely assess HRQoL/psychosocial factors within an individualized framework, to considerer adolescents
as a single/independent group, to emphasize potential protective factors, and, to increase youth’s participation
in their own adaptation process and in health promotion in general. These are possible future directions that
could enable multidisciplinary responses to improve HRQoL and psychosocial care in adolescents with a CD.
Do clinical and psychosocial factors affect health-related quality of life in adolescents with chronic diseases?
Publication . Santos, Teresa; Matos, MG; Marques, Adilson; Simões, Celeste; Leal, Isabel; Machado, Maria do Céu
Living with a chronic disease in adolescence can have an impact on the perception of Health-related Quality of
Life (HRQoL). Facing the increasing relevance of psychosocial dimensions and also considering the interaction
with clinical variables, this study aimed to measure the impact of clinical and psychosocial factors (separated and combined) on adolescent’s reported HRQoL. A cross-sectional study was conducted in a clinical population of 135 adolescents with chronic diseases (n=70 boys), average age: 14±1.5 years old. Through a self-reported questionnaire, HRQoL (KIDSCREEN-10), socio-demographic, clinical variables (diagnostic; time of diagnosis; self-perceived pain; disease severity proxy; disease-related medication intake/use of special equipment), and psychosocial variables (psychosomatic health; resilience; self-regulation; social support) were assessed. Separately, clinical and psychosocial variables showed a significant impact in HRQoL, 27.9% and 62.4%, respectively. Once combined, the previously identified variables had a significant impact (64.2%), but a different contribution from clinical and psychosocial variables was revealed: when first entering the clinical variables (model 1) the variance only reaches 30%, and much more from psychosocial variables seems to explain the total (64.2%); inversely, when first integrating psychosocial variables (model 2), the clinical ones added a small significance to the model (0.6%). The present study underlined the association of clinical (“disease-related”) and psychosocial (“non-disease-related”) factors on HRQoL. Furthermore, it reinforced the need to focus more on psychosocial dimensions, highlighted the potential role of psychosomatic health, resilience, self-regulation and social support. It can be suggested that the identification of impaired psychosocial domains may help professionals to better plan, and achieve effective interventions of psychosocial care.
Adolescent’s subjective perceptions of chronic disease and related psychosocial factors : highlights from an outpatient context study
Publication . Santos, Teresa; Matos, Margarida Gaspar de; Marques, Adilson; Simões, Celeste; Leal, Isabel; Machado, Maria do Céu
Background: Adolescents with chronic disease (CD) can be more vulnerable to adverse psychosocial outcomes. This study aims: 1) to identify differences in psychosocial variables (health-related quality of life, psychosomatic complaints, resilience, self-regulation and social support) among adolescents who feel that CD affects or does not affect school/peers connectedness (measured by self-reported participation in school and social activities); and 2) to assess the extent to which psychosocial variables are associated with connectedness in school and peer domains.
Methods: A cross-sectional study was conducted in 135 adolescents with CD (51.9% boys), average age of 14 ± 1. 5 years old (SD = 1.5). Socio-demographic, clinical, and psychosocial variables were assessed, using a self-reported questionnaire, which included the Chronic Conditions Short Questionnaire, KIDSCREEN-10 Index, Symptoms Check-List, Healthy Kids Resilience Assessment Module Scale, Adolescent Self-Regulatory Inventory, and Satisfaction with Social Support Scale. Descriptive statistics, GLM-Univariate ANCOVA and Logistic Regression were performed using the IBM Statistical Package for Social Sciences (SPSS), version 22.0. The significance level was set at p < 0.05.
Results: Thirteen to eighteen percent of the adolescents felt that CD affected participation at school (PSCH) and participation in leisure time with friends (PLTF). These adolescents presented lower results for all psychosocial study variables, when compared with adolescents who did not feel affected in both areas of participation. From the studied psychosocial variables, the most important ones associated with PSCH (after controlling for age, gender, diagnosis, and education level of father/mother) were self-regulation and psychosomatic health. Concerning the PLTF, social support was the sole variable explaining such association. Conclusions: The present study pointed out the association between psychosocial variables; and living with a CD and school/peers connectedness. The need to focus on the assessment of the effects of a CD on adolescents’ lives and contexts is suggested, as well as on the identification of vulnerable adolescents. Such identification could help to facilitate the maximization of social participation of adolescents with CD, and to plan interventions centered on providing support and opportunities for a healthy youth development. For that purpose, a complex and multifactorial approach that includes clinicians, schools, family, and peers may be proposed.
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Entidade financiadora
Fundação para a Ciência e a Tecnologia
Programa de financiamento
5876
Número da atribuição
UID/PSI/04810/2013