Living with the patient who has persistence vegetative state: a qualitative study

Abstract

Aims: The purpose of this research is to discover the experiences of the families with Persistence Vegetative State patients have during homecare after being discharged from Palliative Care Center. In this study, it has been tried to bring out the difficulties occurring during homecare and the reasons for these difficulties. Materials and Methods: The study is envisioned to be qualitative in regards with phenomenological approach, face to face and semi-structured interviews. The study carried out with the 17 family members of patients with Persistence Vegetative State voluntarily at their houses. Interviews were analyzed according to qualitative content analysis. Results: The age average of the family members in this study were 48.2±14.3 year, 12(70.6%) of them were woman. 7(41,2%) of the care providers were the spouse of the patient. The families gave homecare at a median value of 466(IQR =326) days. The study results brought out 4 main themes. The main themes were; Severe Burden, Concern/Fear, Limitations/Incompetencies, Hope/Acceptance/Rejection. Conclusions: The study results indicate that it is very tough for families to have patients with Persistence Vegetative State and they have to go through some strains as a result of the circumstances. With this study, it’s set forth that in order to reintegrate these families into the society, support the ones with financial, physical and psychosocial problems, there has to be a social, health related and economic interference and policies have to be developed.