Patient Interviews Reveal Complicated Relationship With Food and Diet – Cystic Fibrosis News Today

People with cystic fibrosis (CF) can have a complicated relationship with food and eating that changes over their lifetime, a series of patient interviews regarding diet reveals.

For many patients, bad childhood experiences needing feeding tubes and having to pack on more weight impacted their perceptions of diet and eating.

The interviewees also shared strategies for getting enough calories, including choosing high-calorie foods and getting help from friends and family.

The results were published in the study, Perception, experience and relationship with food and eating in adults with cystic fibrosis, in the Journal of Human Nutrition and Dietetics.

CF can have substantial impacts on the digestive system, and many patients will eventually develop CF-related diabetes and/or exocrine pancreatic insufficiency (EPI), a condition in which the pancreas cant release enough digestive enzymes into the gut.

Dietary and eating habits can therefore be crucial for managing CF; for example, patients are often encouraged to eat a high-calorie diet to ensure that they get enough nutrients to power their bodies. However, there is little published research on attitudes toward food and eating among people living with the disease.

Now, researchers in the U.K. conducted interviews with nine adults with CF, ranging in age from the early 20s to the late 40s. All patients had EPI, most had diabetes, and there was a roughly even mix of sexes. Each of the interviews lasted about 20 to 30 minutes.

Despite patients undergoing regular surveillance of their nutritional status and dietary management being a prominent aspect of their CF treatment, this is one of the first studies to specifically explore the perceptions of food and eating experienced by adults with CF, the researchers wrote. The team noted previous generalized patient accounts that eating often felt like just another necessary treatment.

One theme that emerged from these new discussions was that many adults recalled bad experiences with food as a child for example, being picky eaters or feeling that they had no appetite but that these problems tended to get better as they entered adulthood and had more freedom and control over what they ate. One participant said that meeting his wife had helped him expand his dietary horizons, because we used to go out [for] meals and then I wanted to try new things.

Several participants recalled needing to get nutrition from a feeding tube as children, and said that avoiding the need to do so again helped motivate them to keep up good dietary habits.

I didnt eat very well when I was little and I had to have nasogastric tube feeding [a narrowfeeding tube placed through the nose down into the stomach] for 2 years as I got older it got scary. If I didnt put weight on then I would have to be tube fed I always looked on tube feeding as something to try to avoid, one patient said.

The researchers suggested that, in counseling adults with CF about tube feeding or other measures, such past experiences should be explored, as they may have a powerful influence on patient perceptions.

Generally, eating enough to get sufficient nutrition and maintain a healthy body weight was viewed as a priority by the patients. In fact, for some, eating a high-calorie CF diet could help them feel fortunate relative to their non-CF peers.

When my weight is healthy I dont tend to get as many infections and stuff, yeah, its all part and parcel of staying healthy, one interviewee said.

I feel like where my mates put restrictions on what they can or cant eat I dont I just eat what I want, said another.

However, for some patients, the necessity of consuming calories could sap the pleasure out of eating. For instance, one patient said, its not that I dont enjoy eating its that Im not hungry, because its time to eat and because I want to keep on top of my weight and health.

Additionally, while patients generally understood the importance of keeping up a healthy body weight, they also voiced concerns about gaining too much weight and feeling uncomfortable with the image of their bodies.

None of the patients reported dieting, although some did [describe] manipulating their diet to control their weight, balancing this between achieving a beneficial weight for their health and being satisfied and comfortable with their body image, the researchers wrote.

The interviewees noted several strategies for keeping up a high-calorie diet, such as bigger portions, including a host of side dishes for variety, and sticking to routines.

If I go for a meal I will have pasta and then say can I get sides with that or can I have chips or maybe another side like garlic bread adding to it. Thats how I usually think when I am choosing something can I add a little bit more to it, said one patient.

Another recommended choosing higher-calorie food alternatives where possible: Even with smaller things like butter and that I always get proper butter rather than the low fat spreads and stuff I just think its just another way of getting calories in without having to eat more.

Support from friends, family, and healthcare providers also was crucial for keeping up a good diet.

My partner knows, after a long day at work I get home and just have a bowl of cereal she will say thats not enough you need to eat more food, one patient said. Another reported, When my mum goes out she always comes back with some chocolate, she is always plying me with high calorie snacks.

I can go a few days without even thinking about food, another patient said. Friend and my mom then say have you actually eaten anything today and they get me something, otherwise I wouldnt bother.

The researchers said the interviews show the need for clinicians to take experiences from patients childhood into account when helping to create effective dietary plans.

It is important that past experiences with food and eating including childhood experiences and body image perceptions are explored during dietetic consultations, as these can have a sustained effect on eating behaviour in adulthood, the team wrote. Identifying motivations and barriers to dietary change, and aspects of food and eating that are important to patients can aid the success of dietetic therapy and ensure it is patientcentred.

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Patient Interviews Reveal Complicated Relationship With Food and Diet - Cystic Fibrosis News Today