CF parents want online caregiver support tools that can be tailored
Researchers in Canada say study results will be used to develop new resource
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Parent caregivers of people with cystic fibrosis (CF) want a tailored, internet-delivered resource offering mental health support, disease education, and connection with other CF families, a study in Canada showed.
Researchers said the information gained from the interview-based study will be used “to develop an accessible, tailored, Internet-delivered resource for parents” of CF patients, who identified challenges including treatment burden and financial strain.
CF management may require time-consuming daily treatment routines, including airway clearance, pancreatic enzyme replacement therapy, high-calorie diets, and medications such as antibiotics and CFTR modulators. Parent caregivers of children with CF report elevated distress, anxiety, and depression.
Yet resources for these parents in Canada are “limited,” the researchers said, who noted that online programs are a “promising mode of mental health resource delivery for this specialized population” and set out to explore their lived experiences and resource needs.
The study, “A Qualitative Study of the Lived Experiences and Needs of Parent Caregivers of People With Cystic Fibrosis,” was published in Pediatric Pulmonology.
Treatment challenges, social hurdles
The team recruited 23 parents (15 mothers and 8 fathers), ages 31-71. Most participants were white, married, living in urban areas, and employed full-time. Most had a household income of CA$100,000 ($70,590) or more. Nearly all had a child with CF under 18, and most of those children had been diagnosed within six months of birth.
Treatment challenges were common, the interviews showed, as CF care involves oral and nebulized medications, physiotherapy, and nutritional management, plus additional treatments during illness. “You just get bombarded with all of the treatments and all of the medications,” one parent said.
Social challenges included strain on romantic relationships and difficulty explaining CF to others. CF “adds to the stress, the work, and the worry” of a relationship, another parent said. A few parents, however, said the CF diagnosis strengthened their relationship with a partner.
Financial challenges included out-of-pocket costs for supplements or equipment, travel for care, and delays in obtaining provincial coverage for expensive medications. One parent recalled paying $250 a month for a percussion vest that cost $10,000. Lifestyle challenges included needing to take leave from work and difficulty finding childcare providers able to administer CF treatments.
Learning along the way
Many parents said they hadn’t known much about CF before their child’s diagnosis. They needed to learn about the disease’s underlying biology and treatment as they went, seeking more specific information on topics such as family planning and medication side effects along the way.
Parents said they often had to educate teachers, family members, and other people in their child’s life about CF. They said they wanted more resources for mental health support, including clinicians familiar with CF and peer support programs connecting them with other CF parents.
Participants reported a full range of emotions, including worry, frustration, guilt, and grief, alongside joy, pride, and hope. One parent described sadness that felt “book-ended with triumph.” They used coping strategies including meditation, exercise, deep breathing, and self-compassion, and said support from family, friends, and other CF parents was an important source of emotional and practical help.
Asked about their healthcare experiences, parents generally described CF clinic staff as helpful, accessible, and trustworthy, and most were satisfied with the support they received.
“The support that his team gave us made us feel that we weren’t alone in all of this,” one parent said. “If we had a question, there was someone who would help us.”
At the same time, some parents noted disagreements with clinicians about their child’s care and a lack of CF knowledge among healthcare providers outside the CF clinic, such as family doctors and nurses. As a result, parents often had to explain the disease themselves.
Most parents said caring for a child with CF changed their perspective on life and health, and cited a greater desire to celebrate milestones and a focus on their child’s resilience.
Parents said some needs, such as having to be vigilant about treatment adherence and health monitoring, tended to ease as their child got older or started newer medications such as Trikafta.
Many parents were also involved in CF-related advocacy, including fundraising and awareness efforts.
“My family, but I in particular, are heavily involved in work with CF Canada,” one parent said.
When asked what would encourage or discourage the use of an internet-delivered resource, parents said they wanted something user-friendly, evidence-based, mobile-friendly, and not too time-consuming. Barriers cited included lack of time, cost, and outdated information.
Parents said they would like a resource including a social component such as discussion boards or chat rooms, personal stories, and practical tools such as an enzyme calculator, travel checklists, and program completion certificates. Parents said they could use content on CF treatments and routines, managing treatment resistance, and parental mental health, tailored to their child’s age and disease stage.
The researchers noted that the study participants weren’t demographically representative of the broader Canadian CF population, as most were white, partnered, living in urban areas, and had relatively high incomes, and most of their children were generally healthy, with no major complications.
Still, they said, the findings “provide novel contributions by centering the unique perspectives of parents of children and adults with CF in Canada, highlighting “facilitators and barriers for resource use and desired resource components, which will directly inform the development and evaluation of a user-centered, Internet-delivered resource tailored to meet the needs of parents of [CF patients].”
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