Abstract
Introduction. Studying life situations prevailing in families of patients after surgical treatment of congenital heart disease (CHD),
seems relevant to assess the long-term results of treatment and rehabilitation, not only in the clinical aspect, but for more in-depth
consideration of issues of socialization such patients. The purpose of research – based on the results of the survey to examine parents’
opinion about the life achievements and plans for the future of their children after surgical treatment of CHD.
Material and methods. Parents of 2189 children after CHD surgery in the period from 2004 to 2012, were surveyed. Families of 1060
patients with CHD answered a question about the achievements of their children, 515 parents provided information on the preferred
choice of profession for the child in the future. In addition, 1322 families have filled part of the questionnaire, proposed to fill in the
free form.
Results. Information on the achievements of their children with CHD reported in 1060 parents of respondents, representing 48.4%
of all families who participated in completing complex forms. Parents of 515 patients with CHD (23.5% of all survey participants)
answered questions about the preferred of future professions of their children. The most common response was the parent’s preference
for choosing a future profession children with CHD associated with medicine and health – 146 (28.3%). The second most common
response was the parents of the children preferred choice of profession unrelated to physical and emotional stress, without specifying
the type of professional activity – 37 (7.2%). Profession in the field of educational activities (teacher) is the preferred for children
with CHD in the future, 23 (4.5%) families. Free-form questionnaire presented respondents stories about his family, thank you
reviews of the medical questions to doctors, lawyers, social workers.
Conclusion. Expedient to develop and incorporate a training subprograms “professional prospects of patients with CHD” in rehabilitation
programs for these patients with their families on the basis of the children's rehabilitation center.
References
- Kirkpatrick J.N., Kaufman B. Why should we care about ethical
and policy challenges in congenital heart disease? World J.
Pediatr. Congenital Heart Surg. 2013; 4: 7–9.
- Brosig C.L., Whitstone B.N., Frommelt M.A., Frisbee S.J.,
Leuthner S.R. Psychological distress in parents of children with
severe congenital heart disease: the impact of prenatal versus
postnatal diagnosis. J. Perinatol. 2007; 27: 687–92.
- Davies C.L., Brown R.T., Bokeman R., Campbell R. Psychological
adaptation and adjustment of mothers of children with
congenital heart disease: stress, coping and family functioning.
J. Pediatr. Psychol. 1998; 16: 137–49.
- Gerber A.U., Torre A.H., Bьscher G., Stock S.A.K., Graf C.,
Schickendantz S. еt al. Direct non-medical and indirect costs
for families with children with congenital cardiac defects in
Germany: a survey from a university centre. Cardiol. Young.
2010; 20: 178–85.
- Бокерия Л.А., Милиевская Е.Б., Крупянко С.М., Невед-
рова М.Н. Социальные аспекты жизни семей детей после
хирургического лечения врожденных пороков сердца.
Бюллетень НЦССХ им. А.Н. Бакулева РАМН. 2014; 4:
52–60.
- Денисов И.Н., Мовшович Б.Л. Семейное воспитание и про-
филактика. Врач. 2006; 1: 4–8.
- Lesch W., Specht K., Lux A., Frey M., Utens E., Bauer U.
Disease-specific knowledge and information preferences of
young patients with congenital heart disease. Cardiol. Young.
2014; 24: 321–30.
- Kamphuis M., Vogels T., Ottenkamp J., Van Der Wall E.E.,
Verloove-Vanhorick S.P., Vliegen H.W. Employment in adults
with congenital heart disease. Arch. Pediatr. Adolesc. Med.
2002; 156: 1143–8.
- McGrath K.A., Truesdell S.C. Employability and career counseling
for adolescents and adults with congenital heart disease.
Nurs. Clin. North. Am. 1994; 29: 319–30.
- Celermajer D.S., Deanfield J.E. Employment and insurance
for young adults with congenital heart disease. Br. Heart J.
1993; 69: 539–43.
- Geyer S., Norozi K., Buchhorn R., Wessel A. Chances of
employment in women and men after surgery of congenital
heart disease: comparisons between patients and the general
population. Congenital Heart Dis. 2009; 4:25–33.
- Бокерия Л.А. (ред.) Национальные рекомендации по веде-
нию взрослых пациентов с врожденными пороками сердца.
М.: НЦССХ им. А.Н. Бакулева РАМН; 2010.
- Голенкова Л.А. Социально-психологические характери-
стики родительской семьи, детерминирующие выбор про-
фессии современных выпускников школы. Известия Пен-
зенского государственного педагогического универси-
тета им. В.Г. Белинского. 2011; 24: 920–6.
- Векилова С.А. Психологические вопросы профессиональ-
ной ориентации на основе профессиональных семейных
традиций. Известия Самарского научного центра РАН.
2010; 5: 407–9.
