Context
A large group of children has chronically ill relatives. Part of them are young carers; children who take care of a family member suffering from: physical chronic disease(s) or disability(s) and/or chronic psychiatric complaints and/or severe addiction problems (Centre for informal care, 2004). The concerns of young carers mostly stay invisible, mainly because society doesn’t recognize these problems (NJR, 2011).
Not all young carers develop problems later on. What we do know, is that this is a group of vulnerable children. Children with parents with psychiatric disorders for example, have an increased risk at developing psychiatric problems later in life (Bol, Van der Zanden & Smit, 2014). To prevent the development of problems later in life, knowledge on young carers and the problems they encounter is needed.
Objectives
Little research has been done into young carers and there is lack of knowledge on experiences among young carers and the kind of support they require (NJR, 2011), for example from schools. Therefor three studies on young carers’ perspectives were performed. Study 1 aimed specifically at young carers and school drop out from the perspective of the care professional. Study 2 and 3 focused on the experiences, wishes and needs of young carers in general and regarding school specifically. Study 2 aimed at the perspective of young carers and their teachers, study 3 at the perspective of adults once being a young carer.
Methods
All three studies were set up in a qualitative way. Single measurements were done performing semi-structured interviews. Study 3 was retrospective. The interviews were recorded and transcribed, after which the responders checked the text. In the analysis a code was sought closest to the content of the specific text fragment (Baarda, De Goede & Teunissen, 2001). To show relations and differences between the interviews, text fragments with connecting code(s) were grouped under the corresponding main codes. Codes with mainly the same content were put under each other, where with codes with different content space between the codes was created (Brink & Augustijn, 2015). More or less synonymous codes were grouped into one code.
(Preliminary) Results
Study 1: The definition of (young) carers is interpreted in various ways. Most responders find it important that young carers are identified; all responders find it important to know the cause of school dropout. The combination of young carers and truancy is mentioned by the responders. It’s suggested an increased awareness among care professionals towards young carers should be improved. It can be concluded that the definition of young carers is divers and health care professionals have little insight into young carers (Post, 2015).
Study 2: Young carers report to have limited problems in schools. The main problem they do encounter is being unable to concentrate. Young carers felt they received little support from school, and the degree of experiencing understanding from school varied. Teachers indicated there is no policy regarding support for young carers, and suggested teachers should be more aware of them. Young carers indicated support could be improved offering more flexibility, adaption of school rules and developing teachers’ knowledge (Goerres & Schipper, 2015).
Study 3: The effects experienced by young caregivers varied depending on the individual situation, however all young carers experienced an emotional impact. Many of the supporting factors are related to receiving ‘attention and appreciation’. Most of the young carers experienced their social network as being supportive. The experienced obstructive factors vary widely, although ‘lack of attention’ was noted most. The demand for (emotional) attention and appreciation seems an important aspect for young caregivers, improvement in individual support is needed in those areas (Brink & Augustijn, 2015).
