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The Applicability of the “Revised Burden Measure” in Pediatric Settings: Measuring Parents’ Caregiving Burdens and Uplifts

N. Silva1,2, M. Pereira1, M. C. Canavarro1, R. Montgomery3, C. Carona1,4

1University of Coimbra, Center for Research in Neuropsychology and Cognitive and Behavioral Intervention (CINEICC), Faculty of Psychology and Educational Sciences, Coimbra, Portugal

2Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

3Helen Bader School of Social Welfare, University of Wisconsin-Milwaukee, Milwaukee, WI, USA

4Cerebral Palsy Association of Coimbra, Coimbra, Portugal

J Child Fam Stud 2020; 29: 3302-3316

 

In pediatric settings, a valid and reliable assessment of negative and positive dimensions of caregiving can inform intervention processes and improve parent–child adaptation outcomes. While caregiving is a normative component of parenting, the experience can be quantitatively and/or qualitatively different for parents of children with a chronic health condition. The aim of this study was to systematically examine the psychometric properties of the “Revised Burden Measure” in a sample of parents of children with and without chronic health conditions. The “Revised Burden Measure” and self-reported measures of quality of life and mental health were administered to a sample of parents who had children with (n=277) or without (n=117) chronic health conditions.

DOI:
10.1007/s10826-020-01832-z

Stigmatization caused by hair loss – a systematic literature review

M. C. Schielein1, L. Tizek1, S. Ziehfreund1, R. Sommer2, T. Biedermann1, A. Zink1

1Department of Dermatology and Allergology, Faculty of Medicine, Technical University of Munich, Munich, Germany

2Institute for Health Services Re- search in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

J Dtsch Dermatol Ges. 2020 Dec;18(12):1357-1368

 

Hair loss is a symptom that can cause stigmatization and severe impairment of quality of life. The aim of this systematic review was to evaluate the literature on stigmatization of hair loss. Using predefined MeSH terms and keywords, a systematic search was performed in the databases MEDLINE (PubMed), EMBASE, PsycINFO and PsycNET.

PMID:
Epub 2020 Oct 4. 33015951
DOI:
10.1111/ddg.14234

A systematic review on quality of life assessment in adults with cerebral palsy: challenging issues and a call for research.

A.C. Alves-Nogueira1, N. Silva2, H. McConachie3, C. Carona4

1Cerebral Palsy Association of Coimbra, Portugal

2Faculty of Psychology and Education Sciences, University of Coimbra, Portugal

3Institute of Health and Society, Newcastle University, United Kingdom

Res Dev Disabil. 2020;96:103514

 

Little is known about the quality of life (QoL) of adults with cerebral palsy (CP). This systematic review aimed to examine the extent to which methodological best practices have been applied to achieve valid and informative QoL assessments for this population.

PMID:
31706133
DOI:
10.1016/j.ridd.2019.103514

Nice Kids, Healthy Kids? Prosocial Behavior, Psychological Problems and Quality of Life in Children, Preadolescents, and Adolescents with and without Chronic Health Conditions

C. Carona1,2, C. Vitorino1, A. C. Alves-Nogueira1, H. Moreira2, M. Cristina Canavarro2, N. da Silva2

1Cerebral Palsy Association of Coimbra, Coimbra, Portugal

2Center for Research in Neuropsychology and Cognitive-Behavioral Intervention, Faculty of Psychology and Education Sciences, University of Coimbra, Portugal

Cent Eur J Paediatr, 16(2), 182-199

 

Objective – First, to compare prosocial behaviors and psychological maladjustment between children, preadolescents and adoles- cents with and without chronic health conditions; and second, to test the direct and indirect effects, via psychological problems, of prosocial behavior on quality of life (QoL). In addition, the invariance of this model was examined across different age groups and health conditions.

DOI:
10.5457/p2005-114.276

Portuguese Version of the DISABKIDS Diabetes Module

N. da Silva1

1Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany

Central Eur J Paed 2020; 16 (1): 90-92

 

The DISABKIDS questionnaires (1) were devel- oped in 2006 simultaneously in seven European countries, namely Germany, the Netherlands, United Kingdom, France, Greece, Sweden and Austria. They include a set of developmentally ap- propriate and cross-culturally comparable ques- tionnaires for assessing health-related quality of life (HrQoL) in children/adolescents between 8 and 18 years of age.

DOI:
10.5457/p2005-114.261

Disease severity and patient needs/benefits in genital psoriasis: Patient-reported improvement after 6±1 months of Apremilast treatment

N. da Silva, R. Sommer, L. Mellars, C. von Stülpnagel, M. Cordey, M. Augustin (2020, October). 

ePoster presented at 29th European Academy of Dermatology and Venereology (EADV) Congress [Virtual].

Body height or height-related cognitive beliefs: What matters the most for the health-related quality of life of children and adolescents with short stature?

B. Mergulhão, JP. Almeida, H. Moreira, MF. Magalhães, M. Bullinger, MC. Canavarro, N. da Silva (2020, October). 

ePoster presented at ISOQOL 27th Annual Conference [Virtual].

Effects of secukinumab on disease burden, patient needs and benefits, and treatment satisfaction in patients with plaque psoriasis across European regions: Patient’s perspective data from the PROSE study

N. da Silva, R. Sommer, C-E. Ortmann, P. Jagiello, T. Bachhuber, M. Augustin (2020, October). 

ePoster presented at 29th European Academy of Dermatology and Venereology (EADV) Congress [Virtual].

Psychological (co)morbidity in patients with and without anogenital psoriasis and chronic pruritus: Associations between disease/ treatment burden and clinically significant symptoms of depression and anxiety

N. da Silva, M. Augustin, C. Hilbring, C. von Stülpnagel, R. Sommer (2020, October).

ePoster presented at 29th European Academy of Dermatology and Venereology (EADV) Congress [Virtual].

Impact of pruritus in patients with psoriasis: Associations between disease burden, patient needs and interpersonal experiences

N. da Silva, M. Augustin, S. Ständer, C. von Stülpnagel, M. Hubo, C. Hilbring, HJ. Hutt, R. Sommer (2020, February). 

Poster session presented at the Dermatologie KOMPAKT & PRAXISNAH 2020, Dresden, Germany. 

DOI:
10.13140/RG.2.2.24617.34405
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