Literature DB >> 29111898

[The Need for Psychosocial Support in Parents of Chronically Ill Children].

Lydia Morgenstern1, Mira Wagner1, Jonas Denecke2, Benjamin Grolle3, Jessika Johannsen2, Karl Wegscheider4, Silke Wiegand-Grefe1.   

Abstract

The Need for Psychosocial Support in Parents of Chronically Ill Children Chronic illness in childhood and adolescence is associated with special requirements and demands on affected families. In particular, severe chronic diseases and rare diseases with a high level of health care needs or with progressive medical diagnoses permanently challenge the families' resources. The aim of this study was to assess the need for psychological, nursing, legal and organisational support from a parent's perspective. Using qualitative content analysis according to Mayring, data from 96 parents of 68 chronically ill children were evaluated. The findings suggest an increased need for psychosocial support, but, the ideas, needs, and goals of parents are very versatile. However, family-based psychosocial support programs, which are adapted to the specific family situations, are unanimously judged to be useful. Interventions should be flexible as well as tailored to the affected families' individual needs.

Entities:  

Keywords:  Eltern; chronically ill children; chronisch kranke Kinder; familienorientierte Unterstützung; family based intervention; parents; qualitative Forschung; qualitative research

Mesh:

Year:  2017        PMID: 29111898     DOI: 10.13109/prkk.2017.66.9.687

Source DB:  PubMed          Journal:  Prax Kinderpsychol Kinderpsychiatr        ISSN: 0032-7034


  3 in total

1.  Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany.

Authors:  Stefanie Witt; Kaja Kristensen; Silke Wiegand-Grefe; Johannes Boettcher; Janika Bloemeke; Christina Wingartz; Monika Bullinger; Julia Quitmann
Journal:  Orphanet J Rare Dis       Date:  2021-11-27       Impact factor: 4.123

Review 2.  Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action.

Authors:  Leslee T Belzer; S Margaret Wright; Emily J Goodwin; Mehar N Singh; Brian S Carter
Journal:  Children (Basel)       Date:  2022-06-21

3.  Evaluation of two family-based intervention programs for children affected by rare disease and their families - research network (CARE-FAM-NET): study protocol for a rater-blinded, randomized, controlled, multicenter trial in a 2x2 factorial design.

Authors:  Johannes Boettcher; Bonnie Filter; Jonas Denecke; Amra Hot; Anne Daubmann; Antonia Zapf; Karl Wegscheider; Jan Zeidler; J-Matthias Graf von der Schulenburg; Monika Bullinger; Miriam Rassenhofer; Michael Schulte-Markwort; Silke Wiegand-Grefe
Journal:  BMC Fam Pract       Date:  2020-11-20       Impact factor: 2.497

  3 in total

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