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“Pad stories”: Autobiographical stories on life with incontinence pads

 

Do you live with incontinence, or help others with continence care?
Write a “pad story” for a research project

 


Adult incontinence, i.e. involuntary urinary or fecal leakage, is a common health condition, and different absorbent products are used for the management of the condition. We are now looking for research participants, who would be willing to write a “pad story” about the absorbent products they use when managing their own urinary or fecal leakages, or when providing continence care to others. (See the note on terminology below).


To participate in the research, you should: 

  • be over 18 years old
  • have experience in wearing adult incontinence products (pads, male guards, pull ups, briefs, protective underwear, slips, liners, cloths, or any products that may sometimes be referred to as “adult diapers”)
  • and/or have experience in helping others to wear such products (e.g. professional and family carers) 

We hope to receive stories from as many countries as possible.

In this call, you will find more information on the research, its benefits and risks, as well as the right to withdraw from the research. In case you have any questions or concerns, please do not hesitate to get in touch. You will find our contact details at the end of this invitation. 

 

Note on terminology: What counts as a “pad”?

There are different absorbent products available for managing urinary and fecal leakages. Different people may prefer to use different terms, such as incontinence pad, or diaper, and some people may use cloth or other materials. The country and language influences on the terminology and its appropriate usage. 

For the purposes of this research, we use the term “incontinence pad” to generally refer to different absorbent materials used for the management of urinary or fecal leakages, including male guards, pull ups, briefs, protective underwear, slips, liners, cloths, or any products that are often referred to as “adult diapers”. 

When participating in the research, please feel free to tell us about the products that you use, with the terminology that you prefer and are comfortable with.

 

The purpose of the research 

The story collection is part of a wider research project, entitled “Emergent un/sustainabilities of care: The global political economy of the adult incontinence pad”, led by Dr Tiina Vaittinen at Tampere University, Finland. The research is funded by the Academy of Finland (project #321972) and Kone Foundation (project #201802636). There are no commercial interests involved. 

The project seeks to develop socially, ecologically, and economically sustainable continence care. We work with different stakeholders, including pad users, health care professionals, patient advocacy groups, and the industry. To reduce the stigma of the condition, the project seeks to raise consciousness about adult incontinence across societies. 
More information on the project can be found on its website: www.padproject.online

 

What to write?

You may freely choose the theme and style of your “pad story”. We welcome all kinds of stories: tell us what you feel the world needs to know about life with incontinence products. 

Below, we have provided some potential questions that you could write about, but there is no obligation to address any of these themes. Your experiences about incontinence pads matter. How and what you write about those experiences is entirely your choice. 

Some potential questions to address: 

  • How do the incontinence pads help you in your daily life? How do they make it difficult?
  • What kinds of innovative solutions have you come up with, to make pad usage easier?
  • What do you need to consider when traveling, or when going out?
  • How does wearing the pad make you feel, physically and emotionally?
  • How does it physically and emotionally feel to help other people to use pads and with continence care? 
  • Are there any financial concerns you would like to tell us about?
  • How does wearing the pad impact your intimate life? 
  • Are there any COVID19 related stories about pad usage that you would like to share?
  • Are there any stories about pad waste you could share? How do you deal with it under different circumstances? 
  • Are there any stories about continence care and treatments that you could share, either from a patient or carer’s perspective?
  • What would you change in society to make using pads and living with incontinence easier?

 

How to submit a story?

The collection of the stories begins in Summer 2021 and ends 30 November 2021. The stories are collected via an electronic form. To make sure that you can’t be identified in relation to your story, we do not collect IP addresses or any other direct means of identification.

Before you can submit your story, you will be asked to tick a box, where you confirm your informed consent to participate in the research. After this you are asked to provide a pen name and fill in a few details of background information (e.g. country of residence, age, gender). Please save the pen name for yourself in case you wish to withdraw your story from the research at a later stage. You will also be asked for the permission to archive the stories for future research and teaching purposes. The archiving is voluntary, and you may also refuse the permission.

After this, there is a short, voluntary questionnaire. If you do not wish to respond to the survey, just click the tab “next”, to move on to the story submission.

On the story submission page, there is a space where you can write your story. It is advisable, that you write the story first on a word processing software (e.g. Word), and then copy-paste it in the space provided, but you may also write it directly on the form. 

 

How long will it take to participate in the research?

It is difficult to estimate the time that participating in the research will take. There are no requirements or limitations of length for the stories. You may write a short or a long story. You may write about a single event, describe one full day, or a longer time period. 

 

The risks and benefits of the research

There are no immediate risks or benefits of the research to the research participants. Please note, however, that in case you have inconvenient or traumatising experiences of living with incontinence, writing about those experiences may cause anxiety. Please consider this possibility prior to writing, and before you give your informed consent to participate in the research. 

The project aims at reducing the stigma of incontinence, by raising consciousness in society. The research also aims at developing sustainable practices of incontinence care, so that continence care would be socially just and equitably accessible for all, and economically as well as ecologically sustainable. 

 

Confidentiality, data management, storage, and archiving 

All data in the research is processed confidentially, in line with data protection legislation. The practices of data protection are detailed in a separate privacy notice, available in Finnish and English. The data is stored at Tampere University until the end of the research. In case the stories would include details that we think could disclose your identity, we will remove such details prior to storage, analysis, and archiving. The stories may be utilised for research and teaching purposes only.

If you provide us with the permission, your story will be permanently archived in the Finnish Social Science Data Archive FSD  at the end of the research, for purposes of research and teaching in higher education. The FSD processes the data in line with the Data Protection Act, for the purposes of academic and literary expression. If necessary, the FSD may edit the stories before archiving, to meet the requirements of data protection as specified in the law.

 

Voluntary nature of participation

Participation in the research is voluntary, and it is not remunerated. You may withdraw your participation from the research without further justifications for doing so, by contacting the principal investigator and providing the pen name by which your story was submitted (see below for contact details). In such case, we will delete the story from the dataset. In case the story has already been utilised for research publications, the publications however will remain intact, and your story will remain in it. 

 

Privacy in research publications and reporting about the research results
The results of the research will be reported in academic research publications, written in Finnish and English, and in blog posts and podcasts. The research participants’ experiences are always discussed and cited with a tone of respect, while ensuring the anonymity and privacy of the participants. You may follow the research and its results via the project website (www.padproject.online), and at the project Twitter (@padprojectV).


 
For additional information please contact: 

Dr. Tiina Vaittinen (PI)
Health Sciences, Faculty of Social Sciences
Tampere University
GSM: +358 (0)40 190 0770
Email: tiina.vaittinen@tuni.fi

 

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