The lived experience of parenting a child with sensory sensitivity and picky eating.

"Picky eating" is a common behaviour seen in childhood in both clinical and nonclinical populations. Sensory processing difficulties have been repeatedly associated with food refusal and picky eating behaviours. The aim of this study was to explore the lived experiences of parents/caregivers who have a child displaying both sensory processing differences and picky eating behaviours utilising Interpretative Phenomenological Analysis (IPA). Participants were recruited from social media support groups for parents of picky eating children. Pre-selection criteria utilised an adapted short sensory profile questionnaire to ensure the children displayed probable/definite taste-smell, audio-visual and tactile sensory sensitivities. Twelve participants fulfilling the required criteria were interviewed face to face utilising a semi-structured interview schedule. Interviews were transcribed and analysed following IPA guidelines and three common themes are presented here: Battling for control of the sensory environment, Living with stigma and, disapproval, and Staying positive and moving forward. The findings show the very considerable day-to-day challenges of parenting a child with sensory issues with food, including a lack of support and criticism from others. It was apparent that the parents in our study gradually adopted a positive and accepting attitude to their child's eating. This acceptance allowed them to have positive interactions around food with their child such as cooking and playing with food, suggesting that experiential activities serve an important purpose in this population. Further research should examine whether parental interventions based on acceptance of child eating behaviour, and commitment to gradual positive food interactions would be the best strategy to support parents and children.

INTRODUCTION

“Picky eating” is defined as the chronic refusal of many familiar and unfamiliar foods leading to a diet that is restricted in variety (Chatoor et al., 1998; Dovey et al., 2008), and is a common behaviour seen in childhood in both clinical and nonclinical populations (Cermak et al., 2010; Davis et al., 2013; Taylor et al., 2016). It has been estimated that up to 60% of children experience picky eating at some point during childhood (Kumar et al., 2018; Mascola et al., 2010; Steinsbekk et al., 2017), suggesting that this behaviour may be part of a normal developmental stage (Rydell et al., 1995), with a smaller percentage of children having persistent problems that persevere into later childhood (Steinsbekk et al., 2017) and adulthood (Kauer et al., 2015). Picky eating has been associated with nutritional problems and physiological problems such as constipation and low levels of iron (Taylor & Emmett, 2019; Taylor et al., 2016) as rejection tends to be of food groups that are high in macro and micronutrients, as well as fibre, such as vegetables, fruits, and proteins (Galloway et al., 2005; Skinner et al., 2002; van der Horst et al., 2016). Psychological associations with picky eating behaviour in childhood include negative affect (Jacobi et al., 2008), anxiety (Farrow & Coulthard, 2012), and sensory sensitivity (Coulthard & Blissett, 2009; Farrow & Coulthard, 2012). These associates of picky eating in childhood have been found to persist into adulthood, with later psychological problems such as, anxiety, sensory sensitivity, depression, and disordered eating (Barnhart et al., 2021; Zickgraf & Elkins, 2018). The physiological and psychological cost to children with picky eating, suggests that there needs to be a more proactive and informed support from health professionals in this population.

Psychological problems are not restricted to the child, as the parents of picky eaters have been found to internalise problems and have higher stress and anxiety (Lim et al., 2021). Analysis of the content of calls to a helpline from parents of children with picky eating behaviour found that their accounts were both emotional and conflict‐ridden (Harris et al., 2018). They further found that parents had a negative construction of their child's agency in refusing foods, viewing the child as difficult and the problem as intractable. It is common for parents to have low self‐efficacy in relation to resolving their child's refusal behaviours, which can be a barrier to adopting proactive strategies (Russell & Worsley, 2013; Wolstenholme et al., 2020). Picky eating behaviours have also been found to be associated with controlling parent feeding strategies such as pressure to eat, which tends to have a circular negative effect on eating as mealtimes become a negative environment of conflict, control, and coercion (Douglas & Bryon, 1996; Galloway et al., 2006; Larsen et al., 2015; Mascola et al., 2010). It is known that negative mealtime interactions, characterised by stress and controlling practices, lead to greater food refusal and impacts on the wellbeing of both parent and child as well as problematic family relationships (Galloway et al., 2006; Goh & Jacob, 2012) and has been associated with later problematic eating behaviour such as binge eating (White et al., 2019). Interventions for children with high food refusal tend to have a component based on reducing controlling parenting feeding practices and reducing negative mealtime emotions in both children and their caregivers (Kerzner et al., 2015), and encouraging positive food parenting (Daniels, 2019). It is therefore important to consider parental experiences of child eating, and how they may be best supported to effectively parent their child.

Sensory processing can be described as the process of perceiving, integrating, and responding to the multitude of sensory information present in our day‐to‐day environment (Dunn, 1997). There are individual differences in how individuals perceive sensory information, with those who display a low threshold (or sensory sensitivity), having the ability to detect the most minute changes in the sensory environment (Dunn,1997, 2001). Sensory sensitivity, as well as problems regulating sensory input, has been found to be a feature of many childhood diagnoses, in particular Autistic Spectrum Disorder (Cermak et al., 2010; Schreck & Williams, 2006; Tomchek & Dunn, 2007). Evaluating food with its many textures, flavours, smells, and visual variations, is a multi‐sensory experience (Coulthard et al., 2018; Dovey et al., 2012), and one which those with sensory sensitivities tend to find aversive (Coulthard & Sahota, 2016). The ability to notice small sensory changes in foods, has been found to be associated with food rejection in questionnaire and behavioural studies (Farrow & Coulthard, 2012; Nederkoorn et al., 2015; Steinsbekk et al., 2017), particularly the tendency to reject new foods (Coulthard & Sahota, 2016; Johnson et al., 2015), and food groups such as fruits and vegetables (Coulthard & Blissett, 2009). The association of tactile sensitivity in children has led to several behavioural studies which have found that allowing children to play with food without pressure to taste, can lead to greater food acceptance. However, whilst there is a good evidence base for the effectiveness of sensory activities on food acceptance (Coulthard et al., 2018; Coulthard & Sealy, 2017; Ehrenberg et al., 2019), there is no research on how effective these strategies are with children who are very sensitive to sensory information and whether parents use them in the home.

There is a growing awareness that picky eating can have psychological and physiological consequences for parents and their children. The literature on picky eating has focused upon incidence and prevalence (Carruth et al., 2004), and physiological correlates (Taylor et al., 2016), rather than psychological and social experiences. Although some studies have examined parenting picky eaters generally (Wolstenholme et al., 2020), there has been no research to examine the experience of having a child with sensory sensitivities and picky eating. Therefore, to gain an insight into this under‐recognised problem, and to align with previous research where the focus has been typically placed on school‐aged children up to the age of eleven (Boterberg & Warreyn, 2016; Mascola et al., 2010; Rydell et al., 1995; Timimi et al., 1997), this study aims to look at the parental experiences of having a child aged between five and eleven years with sensory sensitivities and picky eating. The research question for this study was “What is the day to day lived experience for parents who have a child with sensory issues with food?”

METHODS

Theoretical background

Interpretative Phenomenological Analysis (IPA) is designed to elicit, closely analyse, and interpret in‐depth accounts of a specific phenomenon from a homogenous group of participants sharing a common, typically challenging situation (Smith et al., 2013). The underlying philosophy of IPA encompasses three theoretical touchstones: A commitment to reporting in an empathetic manner both individual and sample‐level experiences; having detailed self‐reported experiences as the core epistemological currency; and an awareness that interpretations of the phenomenon under scrutiny are filtered by both the participants' and analysts' meaning‐making processes (thus representing a critical realist ontological position) (Smith & Eatough, 2012; Smith et al., 2013). Semi‐structured interviews (SSI) are agreed to be an effective way of enabling participants to express their subjective experiences in a coherent and detailed manner (Smith et al., 2013) and are the most established method for collecting data for an IPA study.

Participants

Participants were recruited from online social media support groups for parents of picky eating children on Facebook between November 2016 and February 2017. Inclusion criteria: all participants had to be the primary caregiver of a child aged between five and eleven. Participant's children were recruited who scored in the definite or probable difference score ranges of Dunn's (1999) Short Sensory Profile (SSP) questionnaire: tactile, visual and taste/smell subscales (as seen in Table 2). Twelve participants, nine females and three males aged between 30 and 68 years, registered interest, and all children (M = 8.07 years, SD = 2.18) fulfilled the inclusion criteria. A brief biography of the participants, their child/ren, co‐morbid diagnoses and sensory profile scores can be found in Tables 1 and 2. Please note all participants and their children were provided with pseudonyms to protect their identity.

Table 2

Score ranges for Adapted Sensory Profile Questionnaire

Area of sensitivity	Typical performance	Probable difference	Definite difference
Audio/visual	25–19	18–16	15–5
Tactile	35–30	29–27	26–7
Taste/smell	20–15	14–12	11–4

Table 1

Table of participant demographics, biography, and sensory profile scores

Name/age	Occupation	Relationship to child	Child name/age	Co‐morbid diagnoses	Sensory profile scoresa
Jane (49)	Full‐time Student	Mother	Louise (7)	Undiagnosed at present, but presenting with autistic spectrum disorder (ASD), sensory processing and ADHD.	Audio/visual = 9 Tactile = 18 Taste/smell = 4
Katie (45)	Full‐time Student	Mother	Evie (8)	She has sensory processing disorder (diagnosed at age 7), cognitive memory problems, ADHD and ASD.	Audio/visual = 9 Tactile = 12 Taste/smell = 8
Marie (30)	Full‐time student	Mother	Andrew (9) and Amy (5)	Undiagnosed at present.	Andrew: Audio/visual = 20 Tactile = 29 Taste/smell = 7 Amy: Audio/visual = 15 Tactile = 25 Taste/smell = 7
Joy (41)	Not in paid occupation	Mother	Daisy (11)	ASD, OCD, and anxiety (diagnosed) and has sensory processing issues (undiagnosed).	Audio/visual = 15 Tactile = 15 Taste/smell = 5
Bob (37)	IT Professional and part‐time student	Father	Ricky (7)	Autistic pathway with paediatrician, also has speech and language delay.	Audio/visual = 13 Tactile = 22 Taste/smell = 4
Annie (36)	Part‐time Masters student	Mother	Joe (11)	ADHD	Audio/visual = 16 Tactile = 19 Taste/smell = 4
Monica (51)	Not in paid occupation	Mother	William (10)	None	Audio/visual = 15 Tactile = 18 Taste/smell = 8
Lucy (65)	Semi‐retired, Not in paid occupation	Grandmother	Paul (5)	None	Audio/visual = 9 Tactile = 18 Taste/smell = 4
Michelle (45)	Retail assistant	Mother	Jude (9)	Dyslexia.	Audio/visual = 14 Tactile = 25 Taste/smell = 4
Susan (68)	Carer	Mother	Simon (5)	None	Audio/visual = 25 Tactile = 25 Taste/smell = 4
Barry (36)	Skilled worker	Stepfather	Ella (8)	ADHD/autistic behaviours but has no diagnoses at present.	Audio/visual = 13 Tactile = 15 Taste/smell = 4
Michael (31)	Skilled worker	Stepfather	Brody (10)	ADHD	Audio/visual = 19 Tactile = 18 Taste/smell = 4

Note: All participant/child names are pseudonyms.

Abbreviations: ADHD, attention deficit hyperactivity disorder; OCD, obsessive‐compulsive disorder; SSP, Short Sensory Profile.

SSP values in bold represent a probable or definite difference for that sensory modality.

Materials

In line with the theoretical and methodological principles of IPA, the interview schedule was developed to allow participants to tell their individual accounts of experience in depth through the use of open questions and probes. In valuing the unique nature of each account, the schedule helped the researchers to understand and subsequently interpret the personal lived experiences of the parent and the issues faced (Smith & Eatough, 2012). The sequencing of questions aimed to enable a sense of order and natural flow in generation of accounts (Breakwell, 2012), which supported a line of enquiry specific to the participants experience in parenting a child with sensory sensitivities with eating; topics covered general day‐to‐day life experience, mealtimes and food preparation, management strategies, social situations, attitudes of others and the challenges, and emotions experienced.

An information sheet was provided to all interested participants containing the research aim, participant requirements, inclusion criteria, and contact details of the researcher. To ensure that the inclusion criteria were fulfilled, all participants completed three subscales from Dunn's (1999) Short Sensory Profile (SSP) which is a well‐used screening questionnaire used in both clinical and nonclinical practice. Participants were required to indicate the frequency their child presented behaviours from statements encompassing three areas of sensory sensitivity within each area that could be related to eating behaviours. Examples of the statements can be seen here: Visual/Auditory Sensitivity example: Holds hands over ears to protect ears from sound; Tactile Sensitivity example: Has difficulty standing in line or close to other people and Taste/Smell Sensitivity example: Picky eater, especially regarding food textures. Answers were on a Likert‐type scale giving a choice of five answers ranging from; Always (1): child presents with this behaviour 100% of the time, to Never (5): child presents with this behaviour 0% of the time. Scoring was one directional, with a lower score indicating a greater sensory sensitivity as shown in Table 2.

Procedure

Full ethical approval was granted by the University Ethics Board. Interested participants were provided with an information sheet and copy of the adapted SSP questionnaire. Participants who fulfilled the inclusion criteria were invited to take part in a face‐to‐face interview in the university campus research rooms. Interviews lasted between 29 and 47 min, with the mean interview length being 36 min.

Analytic approach

Analysis was initially carried out by the first author and subsequently discussed and refined by the second and third authors. The processes used were adapted from Smith et al.'s. (2013) flexible guidelines for transparent and systematic processes. Initially, the first author transcribed the interviews utilising aspects of the Jeffersonian transcription (Jefferson, 2004) and immersed herself in the data; this produced a detailed analysis of each account as an individual case study with constant cross‐referencing between the researcher's conceptions and potential emerging codes from the data set. Individual mind maps and theme tables were produced for each participant. These were reviewed by the second author. Themes at an individual level were then synthesised and reviewed across participants focusing on deeper interpretation and conceptual abstraction. This analysis was captured on a thematic map and content reviewed by all authors. The analysis and discussion of the themes are integrated and illustrated by a selection of anonymised extracts from the interviews.

Reflexive statement

All authors have experience in both the subject area and the methodology utilised in this study. The lead author has first‐hand experiential knowledge of this participant population as a parent of a child who has sensory sensitivities with food. The second and third authors are both respected academic researchers who specialise in child eating and sensory sensitivities, and wellbeing and phenomenological research methods, respectively. Neither have a personal relationship with the research topic.

ANALYSIS/DISCUSSION

During the analysis process, the participants expressed several similarities in their lived experiences and three overarching themes, present in the majority of accounts, were identified and have been presented in this article. Theme one: Battling for control of the sensory environment. Theme two: Living with stigma and disapproval. Theme three: Staying positive and moving forward.

Battling for control of the sensory environment

All parents/caregivers spoke of interpersonal challenges regarding daily life in their family unit when parenting a child with sensory issues. In particular the impact of sensory sensitivities on their child, which in turn had an impact on the whole household. This was divided into two sub‐themes: “Living with the sensory sensitive child's heightened senses” and “How managing the sensory sensitive child disrupts family mealtimes.”

Living with the sensory sensitive child's heightened senses

The children's sensory processing sensitivities influenced the way that they approached their sensory world and their sensory behaviours around food using heightened scrutiny through all sense modalities.

She has to touch people and visualise, so you need to actually show her what you're actually talking about and there is smell, she uses that sense, picking up scents (Katie)

She's always sniffed and examined food (Jane)

Research has found a relationship between sensory sensitivity and detecting food changes leading to an increased aversion to many aspects of food including temperature, textures, smells, and visual appeal (Smith et al., 2005). It is clear that sensory sensitivities have a profound effect on the children's lives, leading them to place control over their sensory input and their sensory world (Green & Ben‐Sasson, 2010). For these children, their ability to distinguish even very subtle differences in food types and brands, that most people would not be able to discriminate between, was frequently a source of amazement and disbelief for their parents:

…. in this day and age, you buy any red sauce it's red sauce right (.) but for someone with sensory issues it's got to be Sainsbury's own or Heinz, if you dare bring anything else, they know even if you put it into the Heinz bottle they know (Bob)

Some children need further proof it is the “right” brand before even attempting to consume the food item

It has to be that brand and you have to show her (Katie)

Utilising their other senses, they can notice differences even when the parent has attempted to take a “shortcut”:

She will only eat Sainsbury's grated cheese in a red bag, if I substitute it, she'll say I'm not eating that (Jane)

You can't get away with anything she's got super senses (Joy)

Similar heightened sensitivity behaviours have been found in studies focusing on sensory sensitivity investigating the textures of food (Douglas & Bryon, 1996), tactile sensitivity (Nederkoorn et al., 2015), and the importance of visual appeal (Fisher et al., 2014). Having a child who can sense subtle differences in food, despite it appearing and looking the same to the majority, is one aspect of sensory sensitivity that often‐left parents somewhat frustrated. Findings from recent research on sensory play interventions (Coulthard et al., 2018), messy play therapy (Chiatto et al., 2019), and food neophobia interventions (Blomkvist et al., 2021), could provide potential solutions to these issues and help improve mealtime interactions and provide much‐needed parent support.

How managing the sensory sensitive child disrupts family mealtimes?

The impact of the sensory child having primary control in the household was prominent and extended beyond food preparation and consumption:

everything has to be on her terms … whether it's leaving the house to go out or having a meal (Jane)

However, for the parents, the most typical impact experienced was during meal preparation, where the making and scheduling of family meals was generally dominated by both the pickiness and heightened sensory sensitivity of one child:

I'm obviously having to cook something completely different cause they won't eat what we have (.) so I'm doing two, sometimes three meals (Marie)

I'd say it was frustrating, it was the fact that if you cook something its time consuming, she will literally say I am not eating that, and she'll walk away (Katie)

As can be seen from these extracts, these behaviours created extra work for parents when attempting to cook “normal” family meals. Parents took difficult practical solutions to manage these challenges, but despite these attempts the social gastronomic experience and nutritional value for other family members was still negatively affected:

the others miss out on things and it's repetitive for them, there's no point me cooking a dinner and one separate whole dinner for him, but that means they don't get enough different nutritional value (Bob)

as a parent you want to feed your child, you want to give them as best nutrition as you can, and you might have gone out of your way to purchase certain things or prep certain things thinking she might eat this and todays the day she's decided that is no more and has moved onto the next thing whatever that may be (Jane)

Some parents reported their child exhibiting extreme negative behaviours, when they were offered or given foods that they did not perceive as part of their liked range of foods either as main meals or when snacking:

We gave him a broken biscuit and he sat there telling us to fix it … he was shaking it was almost like a temper tantrum (Monica)

she'll scream and shout NO I'm not eating it, are you trying to poison me (Jane)

we did go through a phase where she was actually chucking it, or throwing it or literally just putting it into the bin (Katie)

It is evident that parents felt that their children with sensory sensitivities had some form of control at mealtimes and even had family life revolving around their needs. This affected the whole household, resulting in conflict around family mealtime choices and meal preparation. Conflict at mealtimes between caregivers and their children displaying picky eating and food refusal, has been associated with stress and anxiety, resulting in maladaptive and negative mealtime interactions (Blissett & Fogel, 2013; Mascola et al., 2010). Furthermore, research has uncovered the negative influence the sensory child can have on siblings and parent's mental health and well‐being, through their need to control the environment and reduce sensory input (Bandini et al., 2010).

Living with stigma and disapproval

For all parents, the feeling of being judged for their child's sensory eating issues, was seen in various situations where they experienced negativity towards themselves and their child. Their parenting skills were often seen as ineffectual with a perception of their child as being ‘difficult' and problematic by others. This was most common in extended family contexts in particular mealtimes with grandparents. Experiencing stigma in environments where the expectation is to find support was often both uncomfortable and hurtful:

say you're at grandparents and they've made this meal and it's supposed to be something she likes, then she decides she doesn't like it, that's probably the worst thing, they think she's being difficult which then puts me in an impossible position (Joy)

At times, non‐verbal communication shown by older relatives such as grandparents, appeared to indicate a consensus of disapproval:

there's lots of rolling of eyes and looking at each other from across the table (Jane)

Moreover, for one participant, the stigma and disapproval experienced by familial conflict led to extreme measures being taken to protect their child from negative comparisons with other children in the family:

as a mum, I've disowned my own dad (.) he would prefer the other grandkids because they were perfect and normal and didn't have these eating behaviours (Annie)

Having others making assumptions and judgements about your competency as a parent can have negative impact on the parent and child relationship (Galloway et al., 2005). When a parent seeks professional or clinical advice and support for their child's eating behaviours, there is an expectation that there will be no judgement; however, this was not always the case:

I took him to the doctor, but he just didn't listen to what I was telling him (…) it was a brush it under the rug kind of thing, like oh he's growing and healthy there's nothing wrong he will grow out of it (Michelle)

For some proactive parents, seeking help and support with the aim to be referred to a specialist such as a dietician for their child's eating behaviours, can result in them facing rejection and dismissal over their worries or concerns:

I said are you refusing, and he said yes, he refused point blank, so I got on the internet and found the paediatric dieticians myself (Jane)

Research has found that parents in similar positions to Jane often source help and advice independently (Norris & Katzman, 2015). However, whilst the lack of professional support may be partly due to little clinical classification of sensory issues (Fisher et al., 2014) and not yet established pathways for the diagnosis and treatment of picky eating Bourne et al. (2020), this can in turn leave parents in a state of frustration and undue distress regarding their child's eating behaviours. Experiencing disapproval from both family members and healthcare experts could lead to some parents internalising doubts about their own parenting skills:

You know you're a good mum but then there can be a fine line between wanting to feed your child the right things and not wanting them to starve (…) it's a catch 22 situation and it messes with your head (Monica)

It is interesting that Monica separated her concept as a parent in the feeding context from her general parenting ability, thus aiming to preserve her self‐efficacy as a mother and maintain her self‐identity as a “good parent.” However, for other parents their inner conflict impacted on their self‐concept and hope for a “normal” family life:

usually, I wouldn't show her I'm feeling that way, but I just went (quietly) I can't do this anymore I'm so upset because you can't do a normal or everyday activity that families do because of it (Joy)

As living in such a highly stressful environment can have negative effects on the well‐being of some parents; feeling like you are not doing a good job as a parent due to inferences from others results in lack of confidence in parenting abilities, leaving the parent questioning their feelings of adequacy. There was an underlying feeling of resignation from the female participants regarding the impact of negative inferences on confidence levels and low self‐efficacy. It has been found that there is a higher incidence rate of anxiety and depression (Douglas & Bryon, 1996; Russell & Worsley, 2013) and low self‐efficacy (Douglas & Sutton, 2013) in mothers whose children have restrictive eating behaviours.

Staying positive and moving forward

All the parents were keen to discuss how they coped and adapted their daily life to fit in with their child's needs. Parents did report struggling to know to what extent it was better to challenge or tolerate their child's pickiness. However, overtime, their strategies and coping mechanisms were often highlighted with a sense of positivity; this was somewhat surprising given the aforementioned negative impacts on their daily life. Additionally, the need for more information for both parents and professionals was highlighted, therefore this final theme was split into two subthemes: “Strategies and coping mechanisms” and “It's a hard journey.”

Strategies and coping mechanisms

Having to adapt family life according to the needs of their child, parents discussed using proactive strategies so that the whole family can experience a sense of normal family life:

we're always trying to get her to stay at the table with us, even if she's not gonna eat because we want to be family (Joy)

One strategy used by parents was to involve their child in food choices during shopping trips and preparing meals in the hope that this will encourage their child to eat different foods and perhaps because of the transparency of the food selection, production, and consumption process, it often seemed to work and allow for parent‐child bonding activities. One strategy was that pleasant, shared activities that put the child in non‐threatening proximity to rejected foods, might instil a curiosity to taste:

we would go shopping with him, let him choose and look around at what he likes the look of and that's a build‐up, so rather than just cooking it and him eating it I'm trying to involve him to hopefully spark his interest (Bob)

If I can get her to join in with it, she might be more likely to partake in eating, like she loves to faff about, she would really like to, she likes baking and she likes the decorating, but she's not interested in eating it, she likes the process of fiddling and faffing, making little experiments and things like that, I think she sees it as a form of play not as a preparation for food (Jane)

Whilst some strategies such as choosing food at the supermarket did not on most occasions immediately lead to an increase in consumption, parents still viewed it as important to encourage positive interactions with different food types. Research has found that when a child has an aspect of control in their interactions with food, this facilitates a positive promotion of agency (Allirot et al., 2016). Moreover, the parents in this study also developed and tried different coping mechanisms and strategies with the aim of getting through each day to avoid any conflict. However, some of these strategies were more associated with the parent simply complying with the child's specific preferences; the approach often taken was to accept their eating behaviour for the sake of an “easy life”:

Basically, I just try and get and choose the brands I know she will eat, and then if she wants anything different, I think oh I will do a separate shop, I will pick them up as she says I want that or I want that (Katie)

Arguing about trying new things is just a vicious circle (…) it's easier to just give him what he WILL eat (Barry)

Aside from finding strategies to encourage healthier food choices and some sense of normality in the household, the area of support from others was a key topic area. Some parents found having support and friendship from others in the same situation was invaluable:

I've found people in online groups and the relief is immense, it's like (…) it's not just us (Lucy)

Previously, research has offered only causal explanations of why children with sensory processing differences display picky eating behaviours (Farrow & Coulthard, 2012; Smith et al., 2005). Solutions are rarely provided, and parents report that they are left with no option but to “go it alone.” For some, this was difficult, and they inadvertently used maladaptive practices, such as using food as a reward, to avoid negative responses (Elford & Brown, 2014). However, some parents understood that being a positive role model and encouraging family mealtimes, could be good long‐term strategies (Frazier et al., 2012). Using experiential knowledge, parents were then able to develop strategies promoting encouragement and interaction with food. Research has shown encouragement can come in many guises, from helping during shopping and meal planning (McIntosh et al., 2010) to cooking the food themselves (Dohle et al., 2014). Furthermore, the development of sensory education facilitates the child to use their senses when exploring new and novel foods, thus encouraging them to try the foods explored and promote choice and agency (Allirot et al., 2016). This is relevant to children with sensory issues, as it allows them to develop and try new foods in their own time with no pressure and within their personal threshold levels of sensitivity (Dunn, 1997). Furthermore, finding the support of other parents in similar situations can be integral to supporting many parents' metal health and well‐being (Mitchell et al., 2013).

“It's a hard journey”: Seeking better understanding and support

Living and caring for a child with sensory food issues was typically described as a difficult, lonely, and unsupportive journey for many parents. The parents interviewed believed the key to understanding is raising awareness and improving support for parents:

This is a real thing not some passing fad, but there's nothing out there telling people about it (…) it's hard and parents need proper support to help them (Susan)

Being pragmatic and becoming more accepting of their child, enabled parents to be reflective and show an empathetic side to those who judged them:

I focused on the behaviours, not the underlying cause, I wish I would've done that earlier as we would've had an easier smoother existence (Jane)

people will never actually understand what it's like because they've not experienced it themselves (Bob)

With acceptance of their lived experience being the key, parents were generally matter of fact when it came to giving advice to others

go with what your child needs and find the routine what works for you, that effort is worth it (Katie)

having patience and being able to step back instead of jumping in (Michael)

Despite living in a stressful home environment, it was clear that parents wished for normality amid perceived chaos, and often approached this with a sense of humour:

Imagine her on her first date out for a meal,” I'm not eating that”, she'd never get a second date (laughs) (Jane)

All participants were realistic that their journey would have no quick fix and were accepting that improvements would occur with long‐term effort encompassing patience, tenacity, strength, and optimism. Having this positive mind‐set of hope for the future, would stand them in good stead when dealing with whatever happened:

One day this won't feel like so much of a battle (…) he will eat more (…) until then you just get on with it and take one day at a time (Lucy)

Throughout the analysis, it was evident that family life in a sensory household is different to the expected societal norms. There are expectations from parents that professionals working within these populations will gain awareness from current research investigating the sensory aspects of food refusal in children. Recent studies have noted the need for more research across a wider range of children with sensory issues, including those with co‐morbid neurological conditions such as ASD (Da Paz & Wallander, 2017). Furthermore, a rise in interventions promoting positivity to improve the mental health and well‐being of parents, has shown that being hopeful in difficult situations can significantly increase positive well‐being (Faso et al., 2013). Acceptance and commitment therapy (ACT) (Kennedy et al., 2014; Rayan & Ahmad, 2016) has already been used successfully to improve eating behaviours in children, encouraging choice with novel foods (Kennedy et al., 2014). It would be interesting to examine whether this type of family therapy could be used to improve well‐being of the whole family through acceptance of certain aspects of the child's sensory behaviours. The need for self‐compassion is perhaps greater within this parent population due to the experience of having their parenting judged by others. Research supporting this concept has found being kind to the self and open/flexible, holds greater benefits for those under psychological trauma, depression, and difficult living environments Yadavaia et al. (2014).

CONCLUDING COMMENTS

Throughout this study, the lived experience of parenting a child with sensory sensitivities is one fraught with demands, control, and judgements. There was a powerful realisation throughout the analysis, that despite the negative aspects of living with a sensory child, most parents showed a determination to overcome any challenges faced. One of the most important messages of this study, is that acceptance of the child's sensory issues by the parent, family and wider community will help relieve some of the negative impact of having a child with these challenges. This is a compelling realisation, and one that needs further investigation for all parents in this situation.

Study limitations

With little previous research investigating this topic area there are limited comparisons to be made, however, there are several limitations in this study that are worth noting. The caregivers interviewed in this sample, all had a child with some aspect of visual, tactile or taste/smell sensory sensitivities, which was confirmed using the SSP. It was clear the children in the sample differed from each other; notably there were different patterns of sensory sensitivities and a substantial number of the children had co‐morbid neurodevelopmental diagnoses. Whilst comorbidities were not factored into the recruitment criteria, it could potentially be considered a limitation, particularly as previous research has found there are differences in parental approaches to feeding when the child has a co‐morbid diagnosis such as Autism, which can explain their food rejection behaviours (Cermak et al., 2010). Additionally, data regarding participant ethnicity was not collected; whilst this did not have a detrimental impact on the present study, it is worth noting that including ethnicity data in future research could be beneficial, particularly from a cultural perspective of wellbeing and parenting a child with these feeding issues.

Recommendations for future research

What is evident, is that despite the children having some differences, many aspects of parental experience were shared, and parents were clear that they needed greater awareness and acceptance of food refusal in the context of sensory processing difference. Future research developing interventions to help parents on this difficult journey would be useful for both parents and professionals. To date, most research and clinical practice focuses upon getting the child to eat more food and does not support the parent to accept their child's differences (Taylor & Emmett, 2018). Therefore, the development of tools for parents, for example, acceptance and commitment strategies, self‐awareness training and a focus on positive parental well‐being, would be encouraging and worthwhile for parents/caregivers (Wolstenholme et al., 2020). It would also be beneficial to research the current knowledge of professionals who encounter parents of sensory children within the areas of healthcare, medicine, and mental health. Investigating their current knowledge and how they approach such issues, would enable researchers to discover the missing links and create information that would develop them holistically, in both a professional and personal capacity. This is turn could create a positive and well needed impact on an area that is currently lacking. Whilst quantitative research can provide metrics, statistics, or discover strategies behind eating behaviours, it is equally important for professionals to understand real lived experiences of caregivers and children, thus facilitating increased understanding and awareness in this area.

CONFLICT OF INTERESTS

The authors declare no conflict of interest.

AUTHOR CONTRIBUTIONS

LC performed the research. LC and HC designed the study. LC, HC, and IRW analysed the data. LC, HC, and IRW wrote the paper. all authors have read and approved the final manuscript.