Search

”Äiti tiedäthän sie, että mie en syö oikeaa ruokaa.” : Turnerin syndroomaa sairastavien tyttöjen syömisvaikeudet äitien näkökulmasta

QR Code

”Äiti tiedäthän sie, että mie en syö oikeaa ruokaa.” : Turnerin syndroomaa sairastavien tyttöjen syömisvaikeudet äitien näkökulmasta

The purpose of the thesis is to describe how eating difficulties appear in girls suffering from Turner syndrome and in the everyday life of the girls’ families. The main objective of this work is to raise awareness of the difficulties associated with eating as well as producing a brochure on Turner syndrome, eating difficulties and some of the factors that can help. The brochure is aimed at parents as well as professionals including ma-ternity clinics, daycare and pre-school. The thesis is limited to effects of the eating diffi-culties of pre-school girls suffering from Turner syndrome in the everyday life of the families from the mothers’ point of view.

Ann e-mail interview with volunteers was carried out: mothers whose families have a girl suffering from Turner syndrome. In the interview we asked about the mothers’ ex-periences with their daughters’ eating difficulties. What kind of eating difficulties does your daughter suffering from Turner syndrome have and how do they manifest them-selves? How have the difficulties affected your daily life and your social life? From where have you received information about your child’s illness or support to dealing with it? What kind of support have you received or have wished for from different pro-fessional groups? How have your daughter’s eating difficulties been taken into consid-eration in daycare? What things have you found to alleviate the eating difficulties?

The theoretical framework of the thesis consists of the Turner syndrome diagnosis in a child's development from the perspective of the early childhood education and family life management. Studies on the eating difficulties connected with Turner syndrome do not exist. The interview responses showed that the mothers are mainly unhappy with the information and support from various professionals. In the responses some Turner syndrome related areas stood out in which the mothers hoped for improvement. These areas were, for example, access to information about eating difficulties, family support, and, on the part of the various professional groups, knowledge about and attitudes to-wards factors which can help with eating difficulties.

There is no research on eating difficulties associated with Turner syndrome. The differ-ent professional groups working with the children should pay attention to encountering the girls and the families individually and without haste. The most important suggestion for improvement based on this work is to increase awareness of the eating difficulties associated with Turner syndrome among various professional groups, and through them among the parents.

Saved in: