Family settings and socio-psychological features of the patients of St Petersburg Children’s Hospice

Abstract

The paper presents the outcomes of the study conducted at the children’s hospice, which examined the patients’ socio-biographic and sociopsychological characteristics along with the socio-biographic characteristics of their close relatives. The authors discuss specific conditions and needs related to nursing severely ill children.

The sample group included 177 families raising children who suffer from incurable diseases with little or no potential for rehabilitation, who require symptomatic therapy, psycho-social counselling and long-term nursing care. An original questionnaire for parents with children in need of palliative medical care was developed by the authors to complete this study. The questionnaire includes 3 sections: 1) the child’s details; 2) family details; 3) details of the child’s and their relatives’ needs (information support, counselling, financial help, leisure services). The analyzed characteristics were also divided into several areas: biological factors (child’s age, adult’s age, nature and duration of the illness, etc.); macro-social conditions (residence, living conditions, financial position of family, etc.); family factors (parents’ family status, presence of other children in the family and their relationship to the patient, etc.); and subjective characteristics of an adult (level of education, employment status, etc.).

The study allowed the authors to establish a socio-psychological portrait of a Children’s hospice patient. A comprehensive list of characteristics which describe the children in hospice care revealed a broad range of abnormal behaviour and impediments in social communication and interaction. The majority of Children’s hospice patients have serious disabilities associated with the nature of their illnesses (restricted ability or inability to perform activities of daily living, to move, to navigate, to communicate, to control one’s behaviour, or to learn). In addition, only 5.47% of the children exhibited no socio-psychological features related to negative emotional reactions caused by interaction with the outside world. The sense of subjective welfare in most families is either average or below average. Routine tasks and problems related to the child’s up-bringing are perceived as difficult, overwhelming and often insuperable. This indicates a high level of parents’ fatigue and psychological exhaustion and their need for support in solving the problems associated with providing for the family’s well-being.