Behavioural feeding difficulties amongst children with intellectual and developmental disabilities: exploring experiences, support, and interventions for families

Introduction

Behavioural feeding difficulties amongst children with intellectual and developmental disabilities (IDD) are common and there are often many impacts that children exhibiting these, and their families experience when a child exhibits a behavioural feeding difficulty. Children with IDD have many risk factors that makes it more likely for them to develop and continue to exhibit behavioural feeding difficulties, including the complexities that come alongside having an IDD itself. The theoretical literature on behavioural feeding difficulties is complex and often overlaps, resulting in lack of clarity in a theory that clearly encapsulates all the relevant factors to consider and target in an intervention for behavioural feeding difficulties amongst children with IDD. This thesis seeks to explore the experiences of behavioural feeding difficulties, related supports and interventions for families.

Methodology

Parents of children with IDD exhibiting behavioural feeding difficulties were interviewed to understand their lived experience of their child's behavioural feeding difficulty and any related supports they had received (Chapter Two). The existing qualitative literature was also explored, and family experiences of their child's behavioural feeding difficulties were reviewed and data re-analysed using meta-ethnographic methods, resulting in a meta-synthesis of the qualitative research on this topic (Chapter Three). Following this, National Health Service (NHS) Clinicians were interviewed about their experiences of supporting children with IDD exhibiting behavioural feeding difficulties (Chapter Four). The data from these chapters (Chapter Two, Chapter Three, and Chapter Four) provided important information related to stakeholder perspectives of behavioural feeding difficulties and the support that are available for these. This information, along with the wider literature was explored and synthesised into a logic model for an intervention approach for behavioural feeding difficulties amongst children with IDD (Chapter Five). Finally, this logic model, informed by stakeholder perspectives and the wider literature, was used to inform the development of an intervention for behavioural feeding difficulties in this population, and a final empirical study (Chapter Six) used single-case design methodology to test the effectiveness of this intervention approach (i.e., were changes in the dependent variables - food refusal, other challenging mealtime behaviours - seen when the independent variable - the intervention - was implemented?).

Results

Twenty-two parents of children with IDD exhibiting behavioural feeding difficulties were interviewed in Chapter Two. Parents reported a wide range of impacts experienced to their children, themselves, their wider family, and the results yielded a grounded theory of the impact of behavioural feeding difficulties on families and the role of understanding. It was clear that understanding was very powerful for families, and this was reported to mitigate some of the impacts parents experienced. Families also reported experiencing significant difficulties obtaining appropriate supports for their child in England. Chapter Three reviewed 16 studies and found that the experience of families and their reported difficulties were largely congruent experiences, including difficulties related to receiving support for their child's behavioural feeding difficulty.

Ten clinicians supporting children with behavioural feeding difficulties and IDD in NHS Trusts in England were also interviewed (Chapter Four). Participants described three key factors to delivering effective support or intervention for this population, and barriers or challenges that they encountered when delivering this support. There was an interesting juxtaposition whereby clinicians reported the critical role of parents but appeared to describe the nature of family work as a challenge. Clinicians also reported multiple systemic barriers related to the NHS system that made it challenging for them to support this population.

An intervention was developed, guided by the logic model developed (Chapter Five), which had several main components: carrying out a functional assessment, undergoing a formulation process, parent training, intervention development, and parent coaching. The intervention was a contextual, values-based approach to behavioural feeding difficulties that was influenced by many factors (described in Chapter Five) like a guiding values-base, collaborative working, and a behavioural approach, among others. Two families participated in this study (Chapter Six) and a multiple-baseline design showed that there were no changes in the children's behavioural feeding difficulties. Interestingly, parents appeared to describe having experienced changes in their mealtimes from pre- to post-intervention, and described reappraising the goals of the intervention itself, describing how it would have been more meaningful to target creating a positive mealtime environment. Social validity was mixed, with the intervention and outcomes being acceptable and appropriate, and the suggestion was that the goal of the intervention could have been enhanced by focusing less on decreasing food refusal and increasing food acceptance and focusing more on creating a positive mealtime environment.

Discussion

It is clear from this thesis that parents experience significant impacts when their children exhibit behavioural feeding difficulties. It is important for families to feel validated in their feeding struggle and have access to appropriate and relevant support, as difficulties with feeding are challenging for parents to manage on their own, despite their abilities to adapt to their child's feeding situation. This support may consider supporting families with understanding why their child is exhibiting a behavioural feeding difficulty as this may result in families feeling a reduced impact from the behavioural feeding difficulty. It may also be important for families to understand why it is happening as this may support families with accepting their children and finding new ways to support them with feeding. Clearly, there are some difficulties with providing support for behavioural feeding difficulties in the NHS in England (e.g., lack of commissioning, no specific service for these feeding difficulties, lack of clarity around service provision), which means families in England may be likely to struggle receiving support in this area. Clinicians sometimes experience a conflicting juxtaposition whereby families are vital in supporting their children with behavioural feeding difficulties and clinicians may find families challenging to work with for a variety of reasons. Existing interventions for behavioural feeding difficulties have centred around the use of aversive procedures like extinction and punishment, and these are not likely to be appropriate for the UK context as there is some criticism of behaviour analysis in the UK (e.g., Milton & Moon, 2012; Milton, 2014; Milton, 2018). As such, a contextual and values-based intervention was implemented with two families, and it found that there was no change produced in the children's behavioural feeding difficulties related to increasing the number of bites taken and reducing the instances of food refusal. Despite this, parents reported the value of going through this intervention process and shifting their goals to creating a positive mealtime environment appeared to be significant for families. While the effectiveness of this intervention approach that was guided by an initial logic model has yet to be determined and requires further refinement and evaluation, this thesis has merged the perspectives of parents and clinicians and incorporated a literature review to come together to provide a research-informed initial model to guide the development of this intervention work going forwards.