Parent’s psycho-social adjustment to child's health conditions in home-based paediatric palliative care service

Supporting parents to cope with illness consequences in a paediatric palliative care (PPC) service is based on an accurate assessment of psychological and social needs of the patient and their family (Jeffrey, 2003). Aim of the study was to appraise how parental perceived stress is related to personal and familial adjustment to child’s life-threatening illness. The parents (35 mothers aged 26 to 56, M = 40.31, SD = 6.83; and 27 fathers aged 30 to 63, M = 43.15, SD = 7.38) of children involved in a home-based PPC service completed: i) the PSI-SF (Abidin, 1995) to measure perceived stress associated to parental role, ii) a questionnaire assessing personal and familial strengths and weaknesses to cope health and life-uncertainty feelings (based on van der Borne et al., 1999), iii) the MSPSS (Zimet et al., 1988) to measure the adequacy of the support that parents feel they receive, iv) the PHLOC questionnaire (DeVellis, 1993) to assess beliefs about who or what affects their child’s health. Results did not show significant differences between fathers and mothers in stress levels, experiences related to the disease, support perceptions, and beliefs. Perceived stress was positively associated with parent’s depression and feelings of uncertainties linked to the disease and the future of all family members. It was negatively related to Family and Significant-Other perceived support. Perceived stress was also positively related to the belief the “fate” controls child’s health. However, parents seemed more likely to believe in the divine influence and less to think that the son's health depends on external imponderables factors than adults of normative and standardization group, but they did not differ from this comparison group for the importance given to health professionals. Practical implications for professionals dealing with the needs of children and their families in a global perspective of palliative cares are discussed.