Examining health care practices for young children with complex feeding difficulties and their families: What's the problem represented to be?

Author: Sandra Mortimer

Mortimer, Sandra, 2021 Examining health care practices for young children with complex feeding difficulties and their families: What's the problem represented to be?, Flinders University, College of Medicine and Public Health

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This research makes a practical and theoretical contribution to the consideration of health care practices informed by the messy everyday realities of living and working with young children with complex feeding difficulties (CFDs). These children require specialised medical and allied health care and multiple health service encounters over extended periods of time, often from birth. My review of the literature identified best practice recommendations to respond to children with CFDs and their families holistically, applying an interdisciplinary approach and considering biological, psychological, and social aspects of care. However, programs and approaches emphasised the physical and behavioural aspects of children’s care and reflected a dominant biomedical and behavioural construction of the issue. The literature review highlighted the lack of critical epistemological approaches in this field and the importance of considering how a problem is constructed as a way of understanding the solutions that are proposed. It also highlighted that there was limited research that examined both carer and clinician perspectives, shed light on interdisciplinary team practice or addressed the everyday lives and needs of the carers and children. I addressed these gaps in this research by employing a poststructural methodological approach to examine the clinical practices associated with caring for these children informed by both the carers and the clinicians. I examined the clinical practices of a paediatric feeding assessment service (PFAS) located within a tertiary hospital in Adelaide to achieve the following three aims:

1. To critically examine and compare how the problem of complex feeding difficulties is being represented in clinical practices and experienced by carers,

2. To analyse how problem representations influence experiences and practices of health care, and

3. To reflect on the contribution and extension of the What’s the problem represented to be? (WPR) approach to clinical practices.

As part of my original contribution to knowledge I applied and adapted the poststructural theoretical and analytic WPR framework developed by Carol Bacchi (2009) for policy analysis to this clinical health care setting. I took the stance that clinical practices are problematisations, in that they create particular understandings of what a clinical problem is. I applied the WPR methodology to deconstruct the ways that the clinical issue of complex feeding difficulties was problematised and the effects of this on carers, children, clinicians, and practices. I then examined these findings through a ‘health as care’ lens informed by the work of Annemarie Mol (2008). This enabled me to examine and describe good health care practices at the level of the clinician, client, and team. I also developed an adapted WPR approach to clinical practices that can be applied in tertiary education and clinical practice settings to support critical review and reflection of health care practices and team functioning for current and future clinicians.

I conducted in-depth interviews, home and clinic observations with carers and clinicians over a seven-month period. I then analysed this data by applying the WPR methodology. I identified the implied problem representation by closely examining how this clinical issue was discussed, described, and framed in clinical practices and service documents. I then compared the clinician and carer data to identify the effects of this problem representation. A CFD was represented as a serious physical problem that affects a child’s ability to put on weight. The implied ‘problem’ was the weight of the child. This drove a focus on the child’s weight which resulted in silences surrounding the traumatic, emotional, and everyday life effects of living with CFDs and carers’ knowledge and expertise. The client/clinician relationship, power imbalances and the effects of team practices were some of the unexamined constructs that were highlighted.

I identified the broad structural factors that made it possible for this problem representation to come about. Some of these included neoliberal influences on health care policy; biomedical dominance; social and cultural discourses of food, mothering, normality; funding models and structures; team and clinical practices reflecting technologies of governing. I also examined the effects of this problem representation on carers and clinicians. Some of these included carers needing to become highly specialised medical technicians to manage their child’s physical needs and distance themselves emotionally from the daily pain and suffering of their child. Carers’ sense of their own wellbeing became inextricably connected to their child’s weight. Clinicians experienced overwork and lack of autonomy in an underfunded service. They were constrained in their practices but found ways to subvert the systems and build positive relationships with each other and their clients which influenced the carers’ experiences of health care.

I applied the adapted WPR model to the PFAS and identified specific recommendations to system responses, environments, and practices. These included reconceptualising the client as central to the team, supporting empowerment, relationships and trust between carers and children; carers and clinicians; and between clinicians; and reflecting on, understanding, and valuing the everyday experiences of carers and children. I was able to describe the aspects of interprofessional team functioning that were most valued by carers and highlight clinical practices and their potential risks, in particular, the risk of reducing clients’ agency to act and speak for themselves. This practical application of the adapted WPR model suggested that it offers a useful tool to support critical review and reflection of health care practices. I developed a guide to using the adapted WPR model to help bridge the gap between policies and practice with sensitivity and care. This adapted model provides a structure and process to help deconstruct and examine clinical practices and their effects and makes a contribution towards improving health care practices and outcomes.

Keywords: complex feeding difficulties, What's the probelm respresented to be?, clinical practices, critical review and relfection

Subject: Paediatrics and Child Health thesis

Thesis type: Professional Doctorate
Completed: 2021
School: College of Medicine and Public Health
Supervisor: Professor Colin MacDougall