People with intellectual disabilities (ID) have intellectual deficits in academic, social skills and several areas of practical skills, and need lifelong help and support from parents and other carers. Independence and consistency in personal hygiene are particularly important for women with ID due to the onset of menstruation. Parents are therefore forced to be involved and intervene in their daughter's intimacy throughout her life. Parents often do not know how to teach their daughter with ID to be more independent, which can leave them feeling stressed and overwhelmed. The main aim of this master’s thesis is to find out what challenges parents face in their daughter's personal hygiene and to use the findings to identify gaps where professionals from different fields could empower parents and their daughters with MDR, thus increasing the quality of life of the whole family.
In the theoretical part, we identify the specificities in the development of women with ID, highlight the importance of health literacy and regular and quality personal hygiene for the health of people with ID, explore how taking care of general personal hygiene and intimate hygiene during menstruation affects women with ID and the whole family, and highlight areas of assistance and support in the area of personal hygiene for the whole family.
We conducted research to gain insight into the challenges parents face in taking care of their daughter's personal hygiene and where and from whom they would like more help and support. 30 parents of a daughter with ID took part in the research, of which 4 were male and 26 were female. The results showed that in all families the mother takes care of her daughter's personal hygiene; more than three quarters of the parents do not report that any strategy or activity has proved useful in helping their daughter to become more independent in personal hygiene. Even though half of the parents are not satisfied with the level of independence and the quality of their daughter's personal hygiene and the resulting constant feeling of stress due to taking care of her, more than 95% of the parents feel competent to help and support their daughter with ID. The results show that daughters are on average not independent in any area, which means that the parents are forced to be involved in the daughter's personal hygiene for the rest of her life. The research highlights a gap between parents and the help offered from different sources, namely parents want additional help and support, especially from health and school institutions in the form of workshops or lectures, but more than 90% have never attended these so far. The results suggest that personal hygiene for people with ID is still often a taboo subject and that parents rarely turn to schools or other institutions for help, even if they would like to.
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