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TOFS Awareness Week 2024

Research summary: Parents’ experiences of feeding children born with oesophageal atresia/tracheo-oesophageal fistula

The SaFE: Swallowing, Feeding and Eating in OA/TOF study is fully supported by “TOFS” and is one of many research projects that we endorse. SaFE is a PhD project being carried out by Alex Stewart, a speech and language therapist, alongside a team of researchers at Great Ormond Street Hospital and University College London.

The study has recently published a paper in the Journal of Pediatric Surgery. To read the full paper please visit – https://www.jpedsurg.org/article/S0022-3468(22)00549-8/fulltext

Below, Alex Stewart, gives TOFS a summary of what the paper contains.

Research study summary-Parents’ experiences of feeding children born with oesophageal atresia/tracheo-oesophageal fistula

What did we do?

This research is part of the SaFE study (swallowing, feeding and eating in children born with OA/TOF), which is being led by Alex Stewart, a Speech and Language Therapist at Great Ormond Street Hospital, alongside a group of researchers at University College London.  We set up a Facebook group to ask parents what their experiences were of eating, drinking and mealtimes.  This type of research explores an issue from the perspective of those people experiencing it.  It is sometimes called “lived experience” research.

Why did we do it?

We know that some children born with OA/TOF have difficulties with swallowing and feeding.  We wanted to find out how these difficulties might affect family life and how parents cope.  It is very important for health professionals to understand how OA/TOF impacts on everyday life.  We can use this information to:

  1. Design services that better meet the needs of families,
  2. Make sure we address all aspects of difficult feeding,
  3. Know what aspects of feeding we should measure to make sure we are offering effective services,
  4. Identify areas that may need further research.

Who took part?

127 parents signed up to the research Facebook group.  Most of these were mothers of children aged 0-5 years, although we also had a small number of fathers take part and 30% of participants had older children.  Thank you very much if you were one of the 127. 

What did we find?

We developed six themes to summarise all the information that was given on the Facebook group.

  1. Feeding my child is scary: Many parents described how frightening feeding their child could be. Some found it scary at first, but the more their child fed, the better it became.  However, for other parents feeding was often anxiety-provoking.  We saw that parents were having to face this fear multiple times a day-as mealtimes are unavoidable.  Feeds or mealtimes were unpredictable which increased anxiety. 

Parents described how each new step in feeding development e.g. moving from breast/bottle feeds to purees or from purees to lumpy foods, brought new fear.  This information is so valuable to health professionals as it highlights how important it is to keep offering support throughout each feeding milestone.  A number of parents described needing to be “brave” at mealtimes and hide their anxiety to keep eating and drinking a positive experience for their child. 

  1. Feeding is a traumatic experience: A smaller number of parents described feeding as being traumatic, rather than scary. Some of these parents described a life-threatening event, such as a blue episode, that triggered post-traumatic stress signs.  Thank you for your bravery in sharing these experiences.  It is so important that we know that this can happen, so that we can try to offer better treatment to prevent the blue episodes but also to make sure we are supporting you as parents more effectively.
  1. Feeding is isolating and filled with uncertainty: Many parents described not being sure about what is “normal” and what is not, what foods to give, when to try new foods and how fast to progress. This all increased the worry around mealtimes.  Parents described feeling unsupported by some professionals, as they didn’t seem to understand the problem or it was difficult to get help in the first place.  Some families also felt isolated as friends and family were less able to help due to feeding difficulties. These parents did not feeling confident leaving their child, not feeling it fair to give others that responsibility or friends/family not feeling able to take responsibility. 

 

  1. Feeding difficulties make eating outside of the home difficult: Many parents told us that eating out of the home was difficult, often due to worries about managing if food got stuck. Parents described having to cope with “looks” or comments from strangers if their child was coughing or struggling with food.  These negative reactions put some people off from eating outside of home. 

It was also difficult when others were taking responsibility for feeding the child, for example grandparents or nursery.  Parents described situations where others “pushed” feeding, by giving more challenging foods not usually offered.  For some this was positive, helping them to gain confidence in their child’s skills.  For others this caused distress, distrust and conflict with family members or caregivers.  Parents described how they prepared very carefully for eating outside of the home.  This included taking specially prepared food, checking the menu before arriving, having clear written guidelines for others, having observed mealtimes to show others what to do and having family members have basic life support training. 

 

  1. Feeding associated emotions: Parents described a rollercoaster of emotions related to feeding. A number of families described feeling immense pride and joy when eating was going well.  However, when food got stuck or when things weren’t going so well, parents described feeling guilty and like they had failed their child.  Some parents described that despite the challenges they feel enriched by the experience and grateful for the small wins.

 

  1. Developing coping strategies: Parents described various coping strategies that helped them become less worried about eating and drinking.  With time some parents became less worried about doing something “wrong”, gaining confidence by taking small steps and having increased knowledge about what to do if feeding was getting difficult.  Specific mealtime adaptations included: eating slowly, taking small bites, chewing well, drinking after a mouthful of food, and making foods more liquid.  Peer and professional support helped parents develop coping strategies. 

 

In this table we have summarised the results and used some of parents’ quotes to help show their meaning.

Table 3: Theme summary and illustrative quotes

Theme

Subtheme

Illustrative quote

Feeding my child is scary

Initial fear

I was petrified the first few times I fed him”

Constant fear

“I’m always scared. Always, even when he goes through a long time of doing well.”

“…every feed I worry and prepare for the worst.  I am on edge, I hold my breath…I don’t take my eyes off him for a second”

Anticipatory fear

“It was nerve wracking.  I used to have my phone in one hand ready to dial 999 [emergency services] and a spoon in the other!”.

[speaking about moving between textures] “We started weaning 2 months ago…but I feel like I’m not moving on from smooth/runny purees because I’m too scared to try anything else.”

Hiding fear

“However nervous I was I always tried hard not to show it so that the experience was positive for my daughter.”

Feeding is a traumatic experience

Single event

I think my first experience scarred me a little. Those earlier memories still haunt me and set me up to feel anxious about feeding…”

Multiple events

“We had many, many blue episodes including the need for resuscitation as a result of drinking milk/early weaning foods.  This has without a doubt left me with a degree of PTSD from everything we’ve seen him go through.”

Feeding is isolating and filled with uncertainty

What is normal?

“you’re constantly asking yourself if you’re moving too fast or too slow or worrying about what could happen.  It’s stressful”

Lack of professional support

“I felt completely on my own and isolated.  Very little support or advice…very much on my own fighting to do the best I could every day”

“Most listen and pretend they understand but it’s quite clear they have no idea what I’m talking about or little understanding to be able to provide a useful answer”.

Lack of family support

“even my mother who was our rock when me and my siblings were growing up…she was too lost during such episodes with feeding issues so I relied exclusively on myself.” 

“No one would feed him except for myself and his dad….it was very tough mentally and emotionally.”

“I don’t think anyone really understands the condition and appreciates its challenges unless they have spent a period of time with us and experienced a choking episode.”

“I didn’t really let anyone else look after her or feed her as I didn’t feel it was safe and not fair to put that responsibility on them.“

“Only a few have been involved with our little boy, my mum sons and 2 trusted friends are completely trusted with him eating/drinking.  Not only for our peace of mind but there’s many that are not confident in managing meals.”

Feeding difficulties make eating outside of the home difficult

Avoiding difficult situations

“I don’t feel very comfortable eating out with my 4 year old son as he sometimes gets food stuck and it is easier to manage the situation at home”

Negative reactions of others

”I had several people tell me that I shouldn’t bring my child out if she has croup/isn’t well…if she struggled with some food and coughed….I would…throw long medical words at them to shut them up but it was still unpleasant and stressful”.

Conflicting feeding practices

“They [nursery] were a little gung ho at times, I remember having to remind them no toast.  But in hindsight, I think we were being more cautious than we needed to be, and actually nursery did get her eating!”

Careful preparation

“I had to provide a lot of information and speak to her keyworker at length about what to look out for and what to do or not do.” 

Feeding associated emotions

 

“Apprehensive and frightened but if she managed it and/or enjoyed it then I felt huge pride.”

“I never get tired of watching him eat.  Little big steps….I’m surprised by what he can manage…  I’m also surprised when he can’t manage something that seems ok.”

Developing coping strategies

Peer support

“We found the TOF group on Facebook invaluable for information.”

“I have a group of friends with babies around the same age and they are just wonderful while out and about.”

Knowledgeable professionals

“Surgical team and professionals very supportive and encouraging”

“We have had input from our local SALT team which has been really helpful”.

 

How are we sharing the results?

We shared the results at the recent oesophageal atresia conference in Cincinnati, USA.  This gave us the opportunity to meet up with researchers doing similar research.  We have also published the results in the Journal of Pediatric Surgery.  You can access the full report here: Parents’ experiences of feeding children born with oesophageal atresia/tracheo-oesophageal fistula – ScienceDirect

What next?

We would like to understand if there are factors that make it more or less likely for feeding to have an impact on mealtimes and family life. 

To do this, we need your help. 

We have designed a detailed questionnaire which asks about your child’s medical history, their feeding and your well-being.  We would like to invite ALL parents of children aged 6 months-11 years to complete it.  It takes about 20-30 minutes to complete. 

Ideally, mothers and fathers would complete the questionnaire separately.  The more people who complete the questionnaire, the more certain we can be of the results.  Whether you have found feeding your child relatively easy or more challenging we would be very grateful for your participation.  To find out more please click or scan… 

If reading this research summary has worried you, please talk to someone about your concerns.  Friends and family may be able to help or contact one of the TOFS TLC team.  If you are worried about your or your child’s health please get in contact with your GP or hospital team.  For any questions or comments about the research, please contact Alex Stewart on alex.stewart@gosh.nhs.uk

 

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