A basic principle of pediatric care is providing family-centered care that takes into account both the common and unique needs of families when a child has a life-limiting condition. Despite this emphasis however, remarkably little attention has been paid to learning about the experiences of families from culturally diverse backgrounds when their child is seriously ill and dies. Findings from previous studies completed by research team members and knowledge of palliative, care principles provide the basis for this proposal. The overall goal of this retrospective grounded theory study is to develop empirically grounded and theoretical conceptualizations of the experiences of Latino and Chinese families.
Specific aims are to describe how Latino and Chinese families 1) responded to the trauma of having a child with a life-limiting condition who died; 2) communicated and made decisions about caring for their child in these circumstances; and 3) cared for their child in these circumstances. In addressing each specific aim, we will also examine: (i) how the experience changed through the transitions from the final stages of the condition to the time of death, and into bereavement; (ii) the influence of the extended family and the cultural community on the families' experience; and (iii) the interactions between members of the health care staff and the families. Participants will include 40 families (20 Latino & 20 Chinese) whose child received care at one of two tertiary care children's hospitals for a life-limiting condition, or in other practice setting in the same geographical region, and who died at least 6 months and not more than 36 months previous to enrolment. Up to three semi-structured interviews, supplemented by participant observation, will be conducted individually with at least one primary caregiver, usually the parent, and up to 4 other members in each family; group interviews will be held with families who choose to do so. Bicultural and bilingual research assistants will collect data. Transcribed and translated interviews, along with field notes, will be subjected to the procedures of grounded theory analysis using three levels of coding. Analysis will be separated for each cultural group first comparing and contracting individuals and families, and then cultural groups. A Cultural Advisory Group will provide consultation in all phases of the study. Findings will offer insight, enhance understanding, and provide meaningful guidance for future research and clinical care in the area of pediatric palliative care.
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|Davies, Betty; Contro, Nancy; Larson, Judith et al. (2010) Culturally-sensitive information-sharing in pediatric palliative care. Pediatrics 125:e859-65|
|Contro, Nancy; Davies, Betty; Larson, Judith et al. (2010) Away from home: experiences of Mexican American families in pediatric palliative care. J Soc Work End Life Palliat Care 6:185-204|