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. 2019 Oct 11;24(Suppl 1):20–29. doi: 10.1111/hex.12977

Table 2.

Qualitative analysis of ten interviews about psychiatric clinical research performed with five men and five women who had declined research participation

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:
  • feeling more secure at the clinic
  • when treatment has started
  • when feeling better

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:
  • something material
  • feedback
  • results
  • appreciation
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’)