Being in tune with oneself, children, and parents: meanings of being a supporter to families with children who disabilities as narrated by parent-selected professionals

• Published in: Journal of pediatric nursing 2005-06, Vol.20 (3), p.214-223
• Main Authors: Lindblad, Britt-Marie, Rasmussen, Birgit H, Sandman, Per-Olov
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; Attitude of Health Personnel; Attitude to Health; Child; Clinical Competence - standards; Cooperative Behavior; Developmental Disabilities - prevention & control; Developmental Disabilities - psychology; Developmental Disabilities/prevention & control/psychology; Health Knowledge, Attitudes, Practice; Helping Behavior; Humans; Narration; Nursing; Nursing Methodology Research; Parents - psychology; Pediatric Nursing - organization & administration; Pediatrics - organization & administration; Philosophy, Medical; Philosophy, Nursing; Professional Role; Professional-Family Relations; Questionnaires; Self Efficacy; Social Support; Surveys and Questionnaires; Trust
• ISSN: 0882-5963; 1532-8449
• DOI: 10.1016/j.pedn.2005.02.010

The importance of giving professional support to parents who have a child with a disability is well documented in the research literature. Research from parents' perspective shows however that how support is delivered for an entire family's well-being is crucial. The aim of this study was to illuminate the meanings of being a supporter as narrated by nine parent-selected professionals. The findings show that having a personal and professional philosophy on being and doing is crucial when helping parents care for their child. Being confident that it is always possible to help means to seek unique solutions for each child and family. Being a trustworthy partner of parents means to trust in parents as invaluable partners as well as to exert efforts to gain the parents' trust, seeing parents as both persons and the child's carer, and being sensitive to parents' vulnerability. Enabling parents to gain competence and confidence in parenthood embraces the knowledge and skills necessary for the competence as their child's carer and respecting parental authority. The findings are interpreted as being in tune with oneself, children, and parents--which in this study implies freedom from being confined by bureaucracy, prestige, and institutional norms but freedom to be authentic and act according to personal philosophies.