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Qualitative questionnaire on the psychosocial wellbeing of mothers of children with BEEC
Qualitative questionnaire on the psychosocial wellbeing of mothers of children with BEEC
- Publication Year :
- 2016
-
Abstract
- Summary Introduction The bladder exstrophy–epispadias complex (BEEC) represents a spectrum of malformations that affect the anatomical and functional structure of the urogenital system. The parents of patients affected by this condition are subject to particularly stressful situations, such as worrying about their child's health, long hospital stays, concerns about the health and constant need for personal care for their children, that can profoundly compromise the quality of family life. Objective The objective of this explorative qualitative study is to evaluate the social situation and the psychological strategies implemented by the mothers of children between 6 and 10 years of age who are affected by BEEC. Study design Fourteen mothers of children aged 6–10 years and affected by BEEC (9 boys and 5 girls) were interviewed. Data on the mothers' experiences were collected through semi-structured interviews (Table). Results The qualitative analysis of the interviews showed that participants described experiences that were characterised by emotions such as fear and anger. Each mother had implemented a different and, sometimes, dysfunctional strategy in order to cope with the complex situation of the son/daughter. The aspects that most clearly emerged from mothers' descriptions were (1) the traumatic situation at the birth of the baby, (2) the sense of embarrassment concerning the pathological condition as the child was growing and the consequent sense of isolation of the mother, and (3) the fluctuation of feelings towards the multidisciplinary staff, which was sometimes seen as an important source of help and some other times as too destabilising and not helpful at all. Discussion The study provided some insight into the psychological and social conditions experienced by mothers of children with BEEC, which could serve as a basis for developing multidisciplinary teams with greater awareness about families living with this condition and better timing in addressing their needs. Conclusions Mothers of children with BEEC show emotional and social difficulties. This is a crucial aspect to consider when planning a multidisciplinary approach to the treatment/therapy, especially considering that children examined in this study are approaching adolescence. Table . Semi-structured interview topic. Number of questions 1 Impact of the diagnosis 4 2 Relationship with the medical team 2 3 Relationship with the partner 4 4 Social life: relationship with colleagues at work, relatives and friends 4
- Subjects :
- Male
Pediatrics
medicine.medical_specialty
Epispadias
Adolescent
media_common.quotation_subject
Urology
030232 urology & nephrology
MEDLINE
Embarrassment
Mothers
Dysfunctional family
Anger
Bladder exstrophy–epispadias complex
Developmental psychology
Bladder exstrophy–epispadias complex, Mothers' experience, Genital malformations
03 medical and health sciences
0302 clinical medicine
Mothers' experience
Surveys and Questionnaires
Adaptation, Psychological
medicine
Humans
Child
Genital malformations
Qualitative Research
media_common
Daughter
business.industry
Bladder Exstrophy
medicine.disease
Long-Term Care
Mother-Child Relations
Family life
Treatment Outcome
Feeling
030220 oncology & carcinogenesis
Pediatrics, Perinatology and Child Health
Quality of Life
Female
business
Psychosocial
Stress, Psychological
Qualitative research
Clinical psychology
Subjects
Details
- Language :
- English
- Database :
- OpenAIRE
- Accession number :
- edsair.doi.dedup.....89da9fb2e4448b385e23bce89714d6e6