No abstract

Advances in the surgical and immunological aspects of pediatric kidney transplantation have resulted in significant improvements in long-term outcome and survival rates. However, there continues to be a negative impact reported on overall family functioning despite the reported good health and quality of life for the transplanted child. This research utilizes a phenomenological approach to examine the lived experiences of seven mothers of children who had undergone kidney transplantation. Findings of the study illuminate that the experience of mothering in the context of pediatric kidney transplantation is reflected in (1) the significance of relationships to the experience of self; (2) the lived experience of time; and (3) opportunities for growth and personal development. This research identifies that, while maternal caregiving in this context is fraught with challenges, there are opportunities for the development of skills and personal growth within the experience. By embracing a strength-based perspective, social work is well positioned to offer support for maternal meaning-making and adjustment during times of stress and uncertainty.

Parents of children with inborn errors of metabolism (IEM) face numerous psychosocial challenges. An increased understanding and awareness of these stressors can ensure better overall outcomes for the entire family. We conducted semi-structured, in-person interviews with ten parents to identify psychosocial stressors, strategies, and supports they utilized to overcome their challenges. Our interview guide was designed to elicit familial experiences during the pre- and post-diagnosis periods. The themes and sub-themes were identified through qualitative descriptive textual analysis of audio-recorded transcripts. Major themes identified include ambiguity of illness, changing family and spousal dynamics, and navigating the healthcare system. Sub-themes revolved around disease effects, psychological stressors, health systems, support, and facing the disease. Healthcare professionals have an opportunity to minimize the impact of negative emotional outcomes by assisting families as they navigate the experience of having a child with an IEM. Our findings can be used to develop and continue a more well-rounded, family-oriented framework for IEM management.