Electronic Thesis and Dissertation Repository

Degree

Doctor of Philosophy

Program

Sociology

Supervisor

Dr. Jerry White

Abstract

Child psychosocial oncology research offers limited examination of fathers’ and dyadic stress and coping. Retinoblastoma (Rb) is a rare genetic eye cancer occurring at birth or early childhood. This qualitative sociological study examines individual and dyadic stress and coping across 4 fatherhood role categories when their child is diagnosed/treated for Retinoblastoma. Using purposive sampling, 23 Canadian Rb couples and 7 unmatched parents completed individual in-depth, semi-structured interviews. Findings confirm fatherhood role identity is diverse, influenced by the current situation, elements of discourse, and cultural references. Often contested in public and private spheres, fathering roles show transitional or permanent change tied to circumstance and dyadic support. In a stress process model, fathers primarily relied on problem-oriented and instrumental coping. Partners were the primary mediator of stress for all fathers, providing extensive emotional and informational supports. Using a systemic-transactional model of coping, most study dyads used positive coping strategies and were often supported by the extended clinical team and Social Worker. These dyads showed symmetrical coping that enhanced short and long term well-being. A life course perspective emerges for individuals with heritable Rb. Mothers focused on their child’s future health risk and Rb transmission to future generations. Fathers focused on possible socioeconomic disadvantage for their child. A disease-treatment matrix impacts the life course experience. Heritable Rb is referred to the single tertiary treatment centre in Canada. Regular travel from home and the absence of common social supports increases individual and dyadic stress for many affected parents. Implications for clinical practice include the importance of face-to-face meetings with clinicians as a primary parent coping strategy. Fathers should be actively encouraged to attend Rb appointments with their partner and child whenever possible. Those that did so enhanced both individual coping and positive dyadic coping outcomes. After clinician information, parents preferred brief, plain language pamphlets and brochures for take-away information. These were commonly lacking and internet resources were the default information source for parents. Some Rb parents gain substantial informal informational and social support from peer parents. Social media is the emerging channel among younger parents for that informal peer support.

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