Experiences of supportive and palliative care of adolescents with life threatening illness: from the perspectives of adolescents, family and nurses as providers : meta-synthesis

Sammanfattning: Incidence of incurable disease and disability has been increasing in the Western world in recent years. Parallel to this increase, survival rates for adolescents and young adults with life threatening illness, specifically cancer, have not improved relative to younger and older age groups. Palliative care is a total care for patients, regardless the type and status of the illness, and aims to improve quality of life by controlling symptoms and alleviating physical social, psychological and spiritual suffering. The varying level of physical, emotional and psychological maturity makes palliative and supportive care needs of adolescents distinct and challenging.  In this systematic review, the aim was to describe the experiences of palliative and supportive care for adolescents with life threatening illness, from the perspectives of adolescents, family and nurses as providers of palliative and supportive care.  A systematic review of descriptive meta-synthesis was the appropriate method of choice concerning the aims focus on subjective experiences of palliative and supportive care for adolescents. PubMed and CINAHL were the two databases used for data sources of qualitative published articles between the years of 2006-2016.  A total of 1066 qualitative published articles were identified, but only 16 articles have met the inclusion criteria. Nine articles were focusing on adolescents’ experiences, whereas five articles were focusing on families’ experiences and the remaining two were on the nurses’ experiences in providing palliative and supportive care to adolescents. A total of eleven themes have emerged. Four themes were from adolescent’s perspective: preserving self or identity, social support, acceptance and feeling positive and care setting. Another four themes were on family’s perspective: social support, information and decision making, care setting and perception of self-image. Whereas the remaining three themes were on nurse’s perspective: importance of family dynamics, reaching out to adolescents, balancing professional and personal involvement.  In conclusion this systematic review meta-synthesis showed that social support, specifically peer’s support had an impact in enhancing coping with the altered body image and ordinary daily social activities of adolescents due to life threatening illnesses and their treatment. Nurses have a key professional role in facilitating the social network of social support to promote quality of life by maintaining the need for normality.