Tied to the worldly work of writing: Parent as ethnographer

Parent narratives have contributed to ethnographic accounts of the lives of children with autism, but there are fewer examples of parents producing their own autoethnographies. This article explores the affordances of an online blog for enabling a parent of a child with autism to produce a written record of practice which may be considered ‘autoethnographic’. Richardson’s framework for ethnography as Creative Analytic Process (CAP) is applied to extracts from a blog post in order to consider its contribution, reflexivity, aesthetic merit and impact. The article addresses the methodological and ethical implications of reconceptualizing parents as researchers and the potential contribution of new writing platforms to the development of auto/ethnography.

Hard Labor

Much of the research on parent caregivers examines only the physical or emotional state of the caregiver, reporting such problems as depression, stress, and poor health. Some more recent studies from the nursing and ethics literature, done mostly with families of children who are living at home and dependent on medical technology, also begin to uncover ethical concerns. This chapter outlines the tasks involved in extreme caregiving, dealing with the most well-researched ones: the physical and financial burdens of care, social isolation, and the need to maintain positivity and advocate for the child’s inclusion. Correlating existing studies with statements made by parents in narrative form, it becomes clear that issues raised by researchers are mirrored by parents. In addition, parent narratives reveal deeper concerns that researchers have not uncovered and begin to offer some explanation behind the problems that have been reported.

Love and Death: Relational Metaphors Following the Death of a Child

Recognised as one of the most painful human experiences, the purpose of this study was to uncover the relational and metaphorical themes embodied in bereaved parent narratives following the death of a child. Using a grounded approach, 420 narratives were analysed. Results of the study found (a) relational trajectory, (b) grief/coping, and (c) communication as prominent relational themes. In the present study, bereaved parents often described their conjugal relationship metaphorically as being in motion, as a living organism, and as on a journey. Grief was primarily described metaphorically as a type of journey. Communication was metaphorically described in terms of being open or closed. Discovering the experiences of bereaved parents adds to our knowledge about how the stress of child death impacts relational resiliency. Implications are discussed.