Die Palliativversorgung von Kindern und Jugendlichen in Nordrhein-Westfalen aus der Sicht der Eltern

Zusammenfassung

Im Rahmen des Modellprojekts „Landesinitiative NRW zur ambulanten Palliativversorgung von Kindern und Jugendlichen” wurde eine Befragung von Eltern durchgeführt, deren Kinder an einer lebenslimitierenden Erkrankung verstorben waren. Ziel dieser Befragung war es, die Versorgung in NRW aus Sicht der betroffenen Eltern zu beleuchten. Die Ergebnisse der Fokusgruppe und die ergänzenden Einzelinterviews wurden einer qualitativen Inhaltsanalyse unterzogen. Es ließen sich verschiedene Probleme und Bedürfnisse von Eltern schwerkranker Kinder identifizieren. Die von den Eltern geschilderten Probleme waren finanzieller, organisatorischer und medizinischer Art. Die Eltern beklagten einen schwierigen Zugang zu Informationen. Im Kontakt zu Ärzten und Pflegepersonal betonten sie die Relevanz von gegenseitigem Vertrauen, konstanten Ansprechpartnern und einfühlsamer Kommunikation. Diese Ergebnisse stehen im Einklang zu internationalen Studien. Die vorliegende Untersuchung zeigt die Relevanz solcher Ergebnisse auch im Einzelfall und die Notwendigkeit, Zugang zu Informationen und Versorgungsangeboten zu erleichtern.

Abstract

As part of the evaluation research of a pilot project for paediatric palliative home care in North Rhine-Westphalia (NRW), parents of children who had died from a life-limiting illness were interviewed. The aim of this study was an assessment of the quality of service delivery in NRW from the parents' point of view. The results of the focus group and the individual interviews were analysed by qualitative content analysis. Different structures of care delivery, as well as problems and needs of parents of seriously ill children could be identified. Financial, organisational and medical issues emerged from the parents' accounts. The parents deplored the difficult access to relevant information. With respect to the interaction with medical and nursing staff the importance of mutual trust, a continuous contact person, as well as empathic communication was emphasised. The findings are consistent with international publications. This shows that a better access to information is crucial for the families.

Schlüsselwörter

pädiatrische Palliativversorgung - qualitative Forschung - Versorgungsforschung

Keywords

paediatric palliative care - qualitative research - health service research

Literatur

• 1 Landesministerium Nordrhein-Westfalen .Modellprojekt „Landesinitiative NRW zur ambulanten Palliativversorgung von Kindern und Jugendlichen”. 2007
• 2 Mack J W, Hilden J M, Watterson J. et al . Parent and physician perspectives on quality of care at the end of life in children with cancer.  J Clin Oncol. 2005;  23 9155-9161
• 3 Cropley A J. Qualitative Forschungsmethoden: eine praxisnahe Einführung. 1. Edition ed. Eschborn; Verlag Dietmar Klotz GmbH 2002
• 4 Crandall B. To Focus Group, Or Not To Focus Group? www.decisionanalyst.com . 1999 [Abgerufen: Juni 2009]
• 5 Dyregrov K. Bereaved parents' experience of research participation.  Soc Sci Med. 2004;  58 391-400
• 6 Hynson J L, Aroni R, Bauld C. et al . Research with bereaved parents: a question of how not why.  Palliat Med. 2006;  20 805-811
• 7 Kavanaugh K, Ayres L. „Not as bad as it could have been”: assessing and mitigating harm during research interviews on sensitive topics.  Res Nurs Health. 1998;  21 91-97
• 8 Michelson K N, Koogler T K, Skipton K. et al . Parents' reactions to participating in interviews about end-of-life decision making.  J Palliat Med. 2006;  9 1329-1338
• 9 Wolfe J, Klar N, Grier H E. et al . Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care.  JAMA. 2000;  284 2469-2475
• 10 Mayring P. Qualitative Inhaltsanalyse. Grundlagen und Techniken. 8. Auflage ed. Weinheim, Basel; Beltz 2003
• 11 Contro N A, Larson J, Scofield S. et al . Family perspectives on the quality of pediatric palliative care.  Arch Pediatr Adolesc Med. 2002;  156 14-19
• 12 Hinds P S, Schum L, Baker J N. et al . Key factors affecting dying children and their families.  J Palliat Med. 2005;  8 (Suppl. 1) S70-78
• 13 Irish Hospice Foundation .A Palliative Care Needs Assessment for Children. Department of Health and Children 2005
• 14 Meyer E C, Ritholz M D, Burns J P. et al . Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations.  Pediatrics. 2006;  117 649-657
• 15 Steele R. Strategies used by families to navigate uncharted territory when a child is dying.  J Palliat Care. 2005;  21 103-110
• 16 Surkan P J, Dickman P W, Steineck G. et al . Home care of a child dying of a malignancy and parental awareness of a child's impending death.  Palliat Med. 2006;  20 161-169
• 17 Theunissen J M, Hoogerbrugge P M, van Achterberg T. et al . Symptoms in the palliative phase of children with cancer.  Pediatr Blood Cancer. 2007;  49 160-165
• 18 Monterosso L, Kristjanson L J, Aoun S. et al . Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service.  Palliat Med. 2007;  21 689-696
• 19 Hechler T, Blankenburg M, Friedrichsdorf S J. et al . Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer.  Klin Padiatr. 2008;  220 166-174

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