The influence of role ambiguity and changing dynamics on support for mothers of children with complex medical conditions
Parents of children with complex medical conditions require support during their caregiving journey. Previous research has focused on the overall parenting experience, and recognised the complexity and challenge that comes as a result of caring for a child with a complex medical condition. However, there is a dearth of research on how parents in the community are supported when providing care for these children. This study utilised constructivist grounded theory methodology, based on the principles of Charmaz, to explore the experiences of mothers of children with complex medical conditions when seeking and accessing support for their own wellbeing, and the experiences of nurses supporting them in the community. Semi structured interviews were conducted via teleconference or telephone with 11 mothers, eight community children’s nurses and one carer involved in the care of children with complex medical conditions, between 2021-2023. Participants were recruited from throughout the United Kingdom using a range of traditional (posters and newsletters) and virtual recruitment methods (social media). Iterative data collection and data analysis took place, facilitating constant comparison of emerging concepts, which directed theoretical sampling. A theory of role ambiguity and changing dynamics was constructed to conceptualise how mothers of children with complex medical conditions seek and access support. Mothers and nurses both experienced role ambiguity and changing dynamics which were realised through two categories; “immersing” and “distancing” and their associated sub-categories. The pendulum metaphor was used to illustrate the oscillation of changing dynamics that role ambiguity caused and also the movement between immersion and distancing that both mothers and nurses needed to enable management of their mother-nurse relationships. The participants experienced challenges navigating relationship dynamics and personal/professional boundaries which contributed to their experience of role ambiguity. Role ambiguity illuminated the current challenges facing mothers as experts, who accepted increasing responsibilities with little choice, in order to fill gaps in service provision. Mothers experienced hierarchical relationships through lack of recognition and judgement. The five sub-categories upholding the theory were: “building up relationships over time’, “skewing into friendships”, “maintaining privacy”, “recognising mothers as experts”, and “increasing mothers’ responsibilities”. This study makes an original contribution to the body of knowledge on the experiences of mothers of children with complex medical conditions and the nurses working to support them in the community. The research emphasises the need for improvements in care co-ordination, reduction in service fragmentation, true partnership working, enhancement of role clarity and increased community supports in order to help alleviate parental burden.
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