Parents' perceptions of their children participating in paediatric palliative treatment and care
Children’s participation is embodied in Article 12 of the United Nations Convention on the Rights of the Child (UNCRC, 2009). Children’s participation is about the right of children who are capable of expressing their views to express them freely in all matters affecting them. In the context of paediatric palliative care children’s participation is also about access to information regarding children’s illnesses, treatment and care. Methods of communication, such as open communication and honesty are the main requirements in order for participation to be genuine. As a means to advance knowledge, this study explores parents’ perceptions of their children participation in the context of paediatric palliative care. The study aims to formulate guidelines, which can be applied to promote children’s participation in their treatment and care in the context of paediatric palliative care. The interpretive descriptive research design was used as the methodology that offers the perspective for analysing situations and enabling practical applicability. Data for this study was gathered by means of semi-structured interviews, a vignette and incomplete sentences. Participants were sampled through a purposive sampling to ensure that the participants are the holders of the needed data. The collected data was transcribed and analysed and the thematic analysis process was incorporated. The findings of this study indicate the parents’ stance towards children’s participation in the paediatric palliative care context. Participants’ perceptions indicate the fears they have with regard to children’s autonomy. Participants’ perceptions are in contrary to the literature on children’s participation and the legislation on children’s rights as their view is that children should not be involved in decision making processes regarding the children’s treatment and care. Participants made reference to their concerns related to the right of their children to participate in decision making regarding their treatment and care. Reference was also made to the societal norms and culture that is part of their existence. Findings suggest that the need exists for developing support systems which will assist the parents in facilitating their children’s participation regarding their treatment and care in the context of paediatric palliative care. Based on the findings of this study recommendation are made to health care systems, that is, the governmental bodies that are involved and responsible for the implementation of policies in health care, hospitals and hospices to focus on developing individualised support structures for parents with children who have life-limiting illnesses as the disease profiles vary and the societal response differs towards these diseases. The support structures should be based on the parents’ understanding of their circumstances and experiences regarding their children’s participation in the paediatric palliative treatment and care.
- Humanities