Take The Survey: Raising Children With Cystic Fibrosis

Being a parent or caregiver can be a challenge all on its own. When you pair regular daily adult responsibilities with a global pandemic and the additional stressors of raising a child with a chronic illness such as cystic fibrosis, you have the potential for increased struggles with mental health.

Mental health and cystic fibrosis

Research indicates caregivers of chronically ill children experience higher rates of anxiety and depression and lower rates of quality of life. Within the CF community, these rates have been found to be 2-3 times higher than the general population.1

It has been documented that individuals with cystic fibrosis and their caregivers experience a greater burden from the child’s illness and treatment than other populations. Therefore, obtaining a better understanding of the psychological stressors that plague this demographic throughout the lifespan while maintaining mental health is of the utmost importance.1,2

Medical family therapy & the Family Systems Genetic Illness model

Within the world of psychotherapy and mental health, medical family therapy and the family systems genetic illness model have recently become more prevalent. Medical family therapy places a strong emphasis on communication and collaboration in relationships between patients and the systems in which they are embedded including family and clinical treatment teams.3

The Family Systems Genetic Illness Model (FSGI) focuses on family functioning in the realm of chronic conditions after clinical onset and incorporates the component of time (before, during, and after diagnosis) and how families adjust, adapt, and cope throughout various phases of illness and disorder throughout the lifespan for all family members, not just the diagnosed individual.4 The FSGI model is a holistic and collaborative approach between the diagnosed individual, family caregivers and loved ones, and the medical care team; all of which are vital components of families within the CF community.

That is why Kristina Dingus, a Licensed Marriage and Family Therapy Associate and Texas Woman’s University Doctoral Candidate developed her dissertation research survey to understand what is contributing to increased rates of emotional health struggles for CF parents and caregivers. The survey is a series of assessments to identify numerical input, and open-ended questions to incorporate participant perspectives and experiences.

Fathers and paternal caregiver representation

Historically, female caregivers are better represented in CF research due to their physical presence with their children at routine clinic visits.5 A majority of CF research reflects an assumption that caregiving roles are delegated to mothers, focusing on the maternal mental health of female caregivers; as such suggesting a lack of paternal involvement or father caregiver burden within the family unit.6

For these reasons, male caregivers are especially encouraged to participate in the current survey.

How will my participation in the study help?

The survey aims to understand why caregivers in the CF community have anxiety and depression rates 2-3 times higher than the general population. What are the contributing factors? Your participation could contribute to how mental health therapists are prepared to work with individuals and families within the CF community. The feedback from this survey will supplement the training they receive on how to deliver higher quality therapeutic services to this special population.

Who can participate in the survey?

The survey is looking for parents and caregivers over the age of 21 raising a child with a cystic fibrosis diagnosis from 1 day old to 18 years old. The parent/caregiver must be responsible for the child at least 50% of the time. The current survey is focused on US residents and participants must have English proficiency.

The survey takes 35 to 50 minutes to complete depending on the length of time spent on the open-ended, experiential questions.

Would you like more information before you begin?

If you have questions regarding the study please contact Kristina Dingus, at 972-841-9171 or email DingusResearch@gmail.com. You may also contact her research advisor, Linda Ladd, PhD, PsyD at 940-391-0834 or Lladd@twu.edu.

You can also share this article with others if you would like to support this project.

Thank you for helping to promote enhanced education for mental health providers and positive experiences for caregivers raising kiddos with cystic fibrosis!

Disclaimer: This study is completely online. The study time commitment is approximately 35-50 minutes. Participation is voluntary and you may withdrawal at any time. The greatest risks of this study include potential loss of confidentiality, loss of time, fatigue, emotional discomfort and/or emotional distress.

By providing your email address, you are agreeing to our privacy policy.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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