Open MSc research concerning Chronic Fatigue Syndrome/ME and pregnancy decision making. Being undertaking at Cardiff Metropolitan Uni

Title of Project: ‘What are the Most Influential Factors for Women with Chronic Fatigue Syndrome in Making Informed Decisions About Starting or Enlarging a Family?’


We would like to invite you to take part in the above-named research study. Before you decide whether or not to take part, it is important for you to understand why the research is being done and what it will involve. Please therefore take time to read the following information carefully.


The Study:


Chronic Fatigue Syndrome (CFS) is a life-altering, long term illness where the individual experiences debilitating periods of fatigue along with other varying symptoms. Women, including those of childbearing age, are at higher risk of being diagnosed with CFS. During this period in their lives, women may be making complicated decisions about whether or not they would like to start (or enlarge) a family.


This study is investigating:

· What the most influential factors are for women with Chronic Fatigue Syndrome (CFS) in making an informed decision regarding family planning

· How women with CFS like to be involved with decisions about their health and well-being

· What additional information and support they would like with decisions about family planning and pregnancy.


What is the purpose of the study?



The purpose of this research is to further inform researchers and healthcare professionals about factors that influence women with CFS’ decisions about family planning and pregnancy to allow greater awareness and improve support available to women with CFS with their decisions.


Why have I been invited to participate?



You have been asked to participate in this project if you are a woman aged 18-50 who has CFS and/or ME, and you are either:


· thinking of starting a family in the next five years;

· are currently in the process of having a child (e.g. through pregnancy, adoption, or fostering), or;

· have had children within the last five years.


Having more than one diagnosis/diagnoses will not result in exclusion from taking part. Please focus your answers on Chronic Fatigue Syndrome and its impact on your life, rather than on other health conditions you may have, wherever possible.


We would kindly ask that you do not participate if you do not fit the criteria of the cohort of interest as stated above.


Do I have to take part?



Participation in this study is entirely voluntary. At the beginning of the online questionnaire, you will be asked to answer some questions to confirm that you give your consent to take part in the study.

You have the right to withdraw consent at any point between now and submission of the online survey. This means you have the right to exit the survey at any point of its duration. The reason that withdrawal cannot be carried out after the submission of the survey is due to the fact that all data submitted will be automatically anonymised. This means there will be no way of identifying the data provided by yourself after submission of the survey.


What will participation involve?



Participation in the online survey will involve answering closed and open response questions regarding CFS and factors involved in decision making regarding family planning. We will also ask you for some basic information about yourself and self-reported health information. The online survey will take around 20-30 minutes and there will be an option to save survey progress to come back to at a later time.


Are there any risks associated with taking part?



The risk associated with taking part in this survey is that certain topics that are being questioned throughout this survey may be sensitive and could cause emotional distress.

Please remember that you are able to exit the survey at any point if you experience any distress about issues being discussed. You can also skip any questions you do not wish to answer.


Sources of support

If you have any concerns about your health and well-being, please talk to your GP or a member of your usual Chronic Fatigue support team. Here is a list of external organisations you may also find useful:



· ME Association: provide information, support and practical advice for people, families and carers affected by M.E. (Myalgic Encephalopathy), Chronic Fatigue Syndrome (CFS) and Post Viral Fatigue Syndrome (PVFS). https://www.meassociation.org.uk/me-association/


· Relate: Relate specialises in relationship support throughout the UK. https://www.relate.org.uk


· Mind: Mind campaigns to improve services, raise awareness and promote understanding' of mental health issues. http://www.mind.org.uk/


· British Infertility Counselling Association (BICA). BICA aims to aid those with fertility problems at any stage of their life. http://bica.net/


· SANDS: https://www.sands.org.uk/ for support with stillbirth & neonatal death


Are there any benefits associated with taking part?



There are no direct benefits to you of taking part in this research. The benefits of this work are that it will contribute to the completion of a student MSc project, and to publications arising from this work that will inform the CFS patient, research and healthcare communities about what is important to women with CFS in making informed decisions about family planning.


What will happen to the results of the research project?



The results of this project will be used as a final submission required for the completion of the masters course of Health Psychology at Cardiff Metropolitan University. Final results of the survey may be published in an academic journal, patient-facing summaries of findings, and for teaching purposes. All reports produced from this study will be fully anonymised, so it will not be possible to identify any individuals from these.


How will my data and my privacy be protected?



All data from participants will be anonymised. This is done in order to comply to the Universities GDPR requirements. I, as the researcher will be the only individual with direct access to this data, while processing data it may be shared with my supervisors. This is in order to ensure proper analysis of all the data produced from this survey.

For further information please go to the following website: https://www.cardiffmet.ac.uk/about/...ges/Data-Protection---Records-Management.aspx


Who is involved in the project?



This project is being done by the researcher, Megan Spackman MSc student, as part of a master’s degree at Cardiff Metropolitan University. I am completing this research project under the supervision of Dr. Rhiannon Phillips who is a lecturer in Health and Wellbeing Psychology at Cardiff School of Sport and Health Sciences, and Dr. Amie-Louise Prior a lecturer at Cardiff School of Sport and Health Sciences.


If I have any questions, who should I contact for further information?



If you have any questions regarding any of the issues raised or general participation in the study, please do not hesitate to contact the following individuals:


Miss Megan Spackman – Researcher on st20161813@outlook.cardiffmet.ac.uk


Dr. Rhiannon Phillips – Supervisor on RPhillips2@cardiffmet.ac.uk


Dr. Amie-Louise Prior – Supervisor on aprior@cardiffmet.ac.uk


Thank you



Thank you for taking the time to read through this Participant Information Sheet. Please remember that participation is entirely voluntary. Please take your time deciding whether you wish to participate in this study.




I confirm that I have read and understood the information sheet for this study. I have had the opportunity to consider the information, ask questions and have had these answered satisfactorily. I understand that my participation is voluntary and that I am free to withdraw at any time during the data collection period (which is the duration of the survey), without giving any reason. If I wish to withdraw during the survey I can exit by exiting the browser. I understand that once data collection has been completed (when I submit the survey), I cannot request for my data to be deleted as it has been anonymised. I agree to the use of anonymised quotes in publications. I agree to take part in the above study.
  • I agree

  • I do not agree
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Here is information on the project supervisors from the University website

Dr. Amie-Louise Prior - https://www.cardiffmet.ac.uk/health/staff/Pages/Amie-Louise-Prior.aspx

Amie’s research interests relate to health and wellbeing. She completed her PhD in 2015 looking at support services for Eating Disorders and has more recently been involved in a project looking at self-esteem and confidence in young girls through the ‘Go Girls Academy’. Amie continues to be involved in the LAUGH project run by Professor Cathy Treadaway in the School of Art and Design, looking at playful objects for people with late stage dementia. The wellbeing and engagement of students is also an area of interest and Amie has been involved in an evaluation of the Activate Your Life programme following delivery to students on the Undergraduate programme.
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From the link above it looks that Dr Prior’s role would be more to do with the processes of the research and being a student, but from the link below it looks like Dr Phillips would be more involved in supervising the research content.

Dr Rhiannon Phillips - https://www.cardiff.ac.uk/people/view/126641-phillips-rhiannon
I'm a Health Psychologist with an interest in a variety of approaches that aim to build confidence and resilience, including Cognitive Behaviour Therapy, Motivational Interviewing, psycho-education, and self-management techniques. I work across a range of clinical areas, including infections, long-term conditions, women's reproductive health, and child health.

Current Projects
  • Starting a family when you have inflammatory arthritis: can a co-production approach to creating pre-conception health improve the sustainability of NHS services? Funding: Health and Care Research Wales Health Studentship Award.
  • Improving the health and quality of life of women with Rheumatic Diseases during family planning, pregnancy and early parenting: women and health professionals’ perspectives on needs and priorities. Funding: Wellcome Trust ISSF Cross-disciplinary Award.
  • Wales Centre for Primary and Emergency Care Research (PRIME Centre Wales). Funding: Health and Care Research Wales Centre Grant 2015-2020.
  • A novel peer-support intervention using Motivational Interviewing for breastfeeding maintenance: a UK feasibility study . Funding: NIHR HTA (13/18/05).
  • Primary care use of a C-Reactive Protein (CRP) Point of Care Test (POCT) to help target antibiotic prescribing to patients with Acute Exacerbations of Chronic Obstructive Pulmonary Disease (AECOPD) who are most likely to benefit (The PACE Study). Funding: NIHR HTA (12/33/12).
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My initial thoughts are that this could theoretically be a very valuable research area, but I worry that there are potential risks if the researcher and her supervisors do not understand that there is no current evidence based treatment for ME only management strategies and that though we lack adequate data on prognosis it is likely that most participants will remain impaired to some degree indefinitely or could even deteriorate. Developing tools that would help individual women or individual families make such an important decision can only be a good thing, and good research on how such decisions are currently made could only help this, however bad research could result in significant harm to individuals and/or their families.

There are some potential red flags in the information above, not least that the researcher refers to the condition as CFS, rather than ME/CFS or ME. Further psychology overall does not have a good reputation for objectively understanding the reality of our condition.

Also my first thoughts are that not all MSc students would have the experience or the insight to handle the issues potentially raised by such research, so much would depend on the individual student involved.

Personally I don’t understand how people are able to come to a decision on whether or not to have children, and feel lucky in that life had more or less made that decision for me before the onset of my ME in my mid thirties.

However I have eight godchildren and I am very aware that my involvement in their lives has varied enormously on the basis my varying health, so my relationship with each of them is very different. Obviously those who I was well enough to be practically involved with as infants and toddlers I have a much closer relationship than those I could not be so hands on with. Interestingly my ME has not been a totally negative factor, and I do not necessarily have a better relationship with those whose baptisms predate the onset of my ME; for example when two of my godchildren lost their father, because I am not able to work, I had the freedom to spend some months off and on in their home country helping the family with practical and emotional support. However I am very aware that overall I had a choice when to be actively involved and when not which is not open to parents.

[Made some amendments to the final paragraph]
 
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Interesting that the cut off dates are 18-50.

Although a friend became a Mum at 18, is it not a much younger than usual age to be considering becoming a parent?

Why cut the age off at 50? There are a number of women older than 50 who had to decide not to have children. They also have some benefit of hindsight as to whether the decisions made all those years ago were the right ones - even if it wasn't what they wanted.

I have to say that no psychological intervention in the world would have made a difference to me. An effective treatment, if not cure, for me would most certainly have.

I'm not sure about this one. Given how many in the field of psychology view ME/CFS I would worry that they would be encouraged to do something that might be not be right for them or their relationship/family. Just as many still believe pushing gradually & steadily increasing activities is helpful.
 
I don't know what the right thing to do about this research is, but I'm so pleased to see Dolphin asking the question about whether it should be shared, and for members to have provided such insightful and useful responses.

Perhaps Miss Spackman could be invited to discuss the concerns here?
 
The survey took me about 20 minutes. Most of it is dedicated to open and ended questions and free form answers, with multiple choice questions towards the end that cover much of the same ground. It was fairly easy to do.

The main topics are why you have decided (or not) to have children while diagnosed with ME, what made the decision easier or more challenging, what level of support you have from a specialist or other doctor, and how/if you have been able to find information about your options.

The assumption is apparently that everyone has an ME/CFS specialist, which I think is rare. Other than that the survey seems ok for qualitative purposes. Some of the multiple choice questions seemed slightly leading (“his easy was it for you to find X information”).

I’m uncertain about the purpose of the survey?

ETA: If the main goal is to determine what a future study or research enquiry should focus on this seems like a ok first step. On its own it’s probably meaningless.
 
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Daisybell said:
It seems a missed opportunity not to look at why people with ME don’t have children... I’m sure there are lots of people like me who would have loved to have had kids...
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I was thinking about this the other day, I am very curious about the impact the illness has on having kids. Not for those who do have kids and develop ME after, that's worthy of study on its own, but of the difference in parenting for those who have ME, especially those who got ill rather young.

I was preparing to get married when I got sick. That relationship and another one ended because of my illness. I do not and likely will never have children because of my illness, because I can't even take care of myself and it is simply impossible as a chronically ill man to find a partner in the first place, not that I would be able to have anything meaningful as I'm not sure I could interact with someone more than 10 minutes per day. And then there are the financial reasons for it, of course.

My prediction would be a drastically lower rate of parenting. Something like 80% lower or about that size. Something that is never discussed. Neither is the lack of a sex life, either. Uncomfortable topics that medicine is not interested in, the real-life consequences on one of the most important things in life, destroyed by the criminal negligence of medical institutions at providing the bare minimum of competent adequate care.

I find the lack of interest very dehumanizing, it shows we are not recognized as people with agency and even the right to procreate. Although that's generally true of disabled people in general, in our case it's particularly egregious since the disability is largely the product of choices made by medical institutions and charlatans pushing an ideological belief system. One that destroyed not only the living but even millions of future born.
 
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