Table 2.
Category | Subcategory | Codes |
---|---|---|
1. Reasons not to participate in research | Affected by disease |
Loss of energy due to disease Social anxiety Planning difficulties (due to ADHD) |
Participation takes time |
Haven't got the time Other priorities Too stressed Too many things to focus on |
|
Uncomfortable |
Fear of leaving blood samples Lack of trust in research methods Concern of handing out personal data The invitation to research felt offensive Physical body examinations are unpleasant Psychiatric disease is a sensitive subject Psychiatric disease is hard to talk about Psychiatric disease is stigmatizing Faeces sampling is unpleasant I am feeling ashamed of my disease |
|
Worry of doing something wrong |
Might not make it to the appointment Might not fulfil the study |
|
Not getting anything in return |
There is nothing in it for me It will be a while before we see any results Unwilling to contribute prior to having received any help |
|
2. Reasons to participate in research | Altruistic reasons |
Helping others by contributing to science feels good Helping researchers to fulfil their study To make a difference Contribute to improving health care |
Personal reasons |
Helping myself by contributing to science Positive attitude towards research Getting a reward Having a personal relationship to the research field |
|
3. Changeable barriers to research participation | Alter the procedure of research information and request |
Invitation to research should take place at a later time, when:
Invitation to research participation should be performed by someone who knows the patient Simplify the information Ask if there are any questions The procedure should not include physical body examination, such as weight checks Do not push patients to participate |
Alter the study set‐up |
Simplify participation make it possible to finish all examinations/samples straight after the invitation, so that no more visits are needed Give participants something in return:
|
|
4. General attitudes and thoughts towards research | Research is a good thing |
Research is necessary Research is important Research contributes to better health care in society Research has helped many people Research has helped me |
Research can be manipulated |
Researchers can choose to only present the findings that they want to see/show, and exclude others The selection process of participants can be biased, both consciously and by mistake Maybe the study is not randomized, and genetic data can be used to show/prove the result the scientist hopes for |
|
Research controls too much in health care |
Medications and methods that don't have scientific support are sometimes denied or not recommended (as alternative methods) Research represents the majority – not the unique patient |
|
5. Attitudes and thoughts towards psychiatric research | Research in psychiatry is a good thing |
Willingness to contribute to psychiatric research increases, since you can relate to this field Research in psychiatry is important Positive feelings about the fact that society is trying to learn more about one's problems/disease Psychiatric research helps people |
Difficulties related to honesty among participants |
It is hard to share one's problems Psychiatric illness sometimes feels taboo Psychiatric illness sometimes feels stigmatizing |
|
Mental illness might affect decision‐making capacity |
You can be cognitively affected by psychiatric illness You might have a hard time taking in and understanding information when you are under psychiatric stress You are not in your ‘right mind’ when you have a psychiatric disease Patients with psychiatric illness might suffer from lack of insight, which can lead to accepting tasks that you do not actually have the time or energy for Patients under psychiatric stress might have a weaker mind at the time and be easy to manipulate |
|
6. General attitudes and thoughts towards biobanks | Biobanking is a good thing |
Biobanks are necessary Biobanks will lead to better health care Biobanks can help answer questions and find problems and solutions in medicine |
Biobanks do not violate privacy |
Biobanking does not involve risks As long as the given information is correct – privacy is not violated Why would you care about someone saving your genetic data? There is no reason to think that donated genetic data will be handled improperly The only thing unpleasant about donating blood samples for banking is leaving the blood sample |
|
Biobanks violate privacy | It may be unpleasant to know that another person has access to my biological data | |
Other people's attitudes towards biobanking are negative |
Others probably think that access to one's genetic data might violate privacy (‘but I don't’) Many have a lack of trust in scientists/research (‘but I don't’) |