Introduction
Materials
Study Participants and Recruitment
Method
Design of the Study
Data Collection
Analysis
Data extract | Initial codes | Sub- Themes (preliminary) | Themes (preliminary) |
---|---|---|---|
“I feel like I’ve been referred back and forth, because I want help to lose weight, but nobody has provided proper help.” | Nobody’s responsibility | Lack of support and follow-up | Insufficient support |
“It felt good [that my sister accompanied me here]. And I hugged her, and I said thank you for coming along today.” | Company during health care visits | Concrete actions | Beneficial support |
Results
Participants Characteristics
Characteristics | Value Mean (range) unless otherwise stated |
---|---|
Gender | |
Women (n) (%) | 12 (75) |
Age (year) | |
Mean (range) | 49 (20–64) |
Origin | |
Nordic origin (n) (%) | 11 (69) |
Type of bariatric surgerya | |
Gastric bypass (n) (%) | 16 (100) |
Time since lasta bariatric surgery to interview (y) | |
Mean (range) | 10 (3–15) |
Weight loss (%)b | |
Total weight loss at the lowest weight since lasta bariatric surgery | 35 (14–50) |
Weight regain (%)b | |
Postoperative weight regain from the lowest weight since lasta bariatric surgery | 36 (12–71) |
Body weight | |
Body weight, pre-operative (kg)b | 146 (96–205) |
Highest body weight after weight regain (kg)b | 128 (80–177) |
Body mass index (BMI) | |
Body mass index, BMI, preoperative (kg/m2)b | 52 (42–70) |
Highest BMI after weight regain (kg/m2)b | 46 (36–66) |
Themes
Theme 1—a Lonely Struggle
Participants felt responsible for initiating contact with healthcare, but were uncertain where they could turn for support. Some were referred back and forth between hospitals and primary care with insufficient communication between medical institutions.Then I lacked support to continue to adhere to the proposed diet, the size of the portions that I should and that was ah... There I needed support and I think it worked badly, the follow-up. No. 5
Participants explained that lack of support increased their feelings of shame, sadness, and abandonment. The attended follow-up visits were perceived as too focused on weight and measurements, and too little on diet, psychological support, or motivational support. Healthcare staff did not bring up the topics of eating disorders or addiction-related problems, and some described the caregiver as uninterested and unhelpful.Nobody gave me anything, no one cared and I was angry and disappointed and ‘I just can’t be bothered’… No. 12
The support from friends and family varied, but was described by many participants as not only insufficient, but sometimes even stigmatizing or discouraging. Participants felt misunderstood and were sometimes the target for negative remarks like nagging and hints about their eating and weight, that they felt were impossible to ignore.I would say the support were merely information about facts. In my opinion one needs a psychologist // Like once or twice a month to start with // because right now it has been nothing but follow-up of weight, BMI, fat percent… No. 16
She [mother in law] constantly comments on my weight, “you should lose weight”, and so I don’t feel like answering her anymore. Losing weight is the only thing I think about, still, she keeps commenting. No. 2
…and the information from different health care clinics varied a lot, so you made sure to compare what they said //…and took the information you got and verified it [the information] with the online forum. No. 15
Participants reported being unaware of the possibility of poor weight loss and weight regain, and of the importance to follow dietary guidelines. Effortlessly losing weight in the beginning gave one participant the impression that she did not need to work actively for her weight loss, and when weight regain started, it was difficult to adjust the diet. Some were disappointed that the procedure itself did not stop them from eating large portions and unhealthy food.I might have relied too much on the method itself and did not realize what I need to do myself. It’s not just a quick fix. No. 2
…so I am disappointed. I feel betrayed. I feel that health care has deceived me. Because when I came home from the hospital after having had the surgery, I was so happy. // I was crying, thinking ‘finally, now I will be thin.’ No. 12
Weight regain induced feelings of shame and guilt, which acted as a barrier for seeking help.…it is my own fault and yes I know that, and I am a bad person and I should be more controlled and more disciplined and less lazy and… No. 5
Participants commonly tried to hide unhealthy eating habits, weight regain, and negative feelings from their family and friends. Several expressed hopelessness and despair, thinking there might be nothing more to do.And it was like… I felt ashamed… that I had failed…that I kept gaining weight but could not do that much about it. No. 3
I thought, now I have done this surgery, I've had the world's chance, yet I regain weight. I must be stupid. No. 8
Negative emotions induced emotional eating, which hampered weight management. Three participants described hazardous alcohol use.I know a girl who does it [vomits]. It helps her. // I may have to try sometime if I am not feeling good. It may be much better to do that than to lay down // Obviously, it’s better to throw up than lay down and absorb calories. No. 3
The fear of stigmatizing treatment was described as a barrier for activities that included social contacts. One patient avoided swimming, yet another stayed indoors because other people commented on her body size. Even participating in an obesity treatment group was avoided for shame of being perceived as the heaviest one. Hiding at home, social isolation, and avoiding healthcare meetings were the strategies that provided relief from shame, while obstructing any possibility to receive social support.You are hungry and need to eat, but you cannot, you cannot get anything down. It is so easy to end up in other addictions and stuff. Then, for me it was alcohol. Drinking was the easy way. No. 11
I did not dare to go out [because of comments].//I was really sad and depressed. To avoid that, I stayed at home. I stayed at home and did not want to go out for 2-3 years. No. 6
Theme 2—Others as Sources of Compassion and Control
One patient found that having her bowel and gastric volume examined and receiving the surgeons’ confirmation that nothing was wrong, positively inspired her to continue searching for lifestyle support. Receiving weight loss medication, clear information, and diet advice, as well as being referred to a dietitian or psychologist was also appreciated.My husband, too, like, he says, ‘Let’s do it together.’ Walk, or do something else. Or occasionally I have tried to cook, I have not fried or deep-fried, just more like boiled or made a salad or like lighter dishes and then he eats with me too. No. 4
Several participants expressed a desire to go through re-operation. Furthermore, participants expressed that it had been meaningful to share experiences with other people who had undergone bariatric surgery. Such encounters were enabled via online forums.It’s when they think that you are good even if you are... like my boyfriend, now when I am eating according to LCHF-diet [low carbohydrate-high fat-diet] and I can’t see any results on the scale, and then he says, ‘no, but it can take a while before your body understands that something is happening.’ That is great. // He can see the bigger picture. No. 8
Several participants requested more external control, thinking that regular check-ups would facilitate healthy eating, as well as providing an opportunity to detect substance or alcohol abuse, dysfunctional eating behaviors, or mental or somatic problems.I think that you should focus more on working with people’s mind before cutting them open, that’s my opinion. I think the surgery is done a bit too easily. No. 7
Some wanted individual contacts only, while others wished for group support with peers who had undergone surgery to see how different people managed life after surgery.I wish that there was follow-up visits every year to stop any weight regain as soon as you notice an increase in weight. Then you can maybe stop it at 120 or 130 kg and advice “you have to do something”, instead of allowing it to continue... No. 2
Additionally, it was proposed that participants’ close relations should receive information, and in some cases, marriage counseling, to enable a supporting family environment.So I think a group [of peers] would have been better, to attain a feeling of ‘I am not alone in this shameful situation of having gained weight, but we are many in the same boat’ and we could get help from a dietitian then, while being honest with each other, the benefits of being in a group. No. 5
One participant felt support had been even more than enough. Her problems with weight regain had been taken seriously, resulting in first a thorough physical examination and then a referral to the obesity clinic... it would be very important, for the first year, that you have enormous support at home. I would like to have practical tips, like you have to help each other with housework, with kids and everything so you can sit down and eat your meal in peace and quiet. There needs to be time to prepare meals. That’s why it is important that your partner also invest time. No. 8
I received a lot of dietary support and they were on me all the time and tried to get me to come there [to the clinic]. It was I who were not really…too keen on it. No. 10