McMaster University

McMaster University

CARE (Caregiver quAlity of life of pediatric patients Referred for fEeding tube insertion: A repeated measures pilot study)

CARE

Caregiver quAlity of life of pediatric patients Referred for fEeding tube insertion: A repeated measures pilot study

Principal Investigator: Dr. Mark Walton
Current Enrollment Number: 31 patients
Funded By: McMaster Surgical Associates Clincial Research Award

Study Summary

The focus of this study is to formally quantify the impact of gastrostomy tube feeding on the quality of life of caregivers who care for children with severe feeding problems. This prospective repeated measures cohort study was conducted at the McMaster Children's 2Q Surgical Clinic.

With enrollment completed, the CARE feasibility results were tabulated and presented at the Canadian Association of Pediatric Surgeons (CAPS) 2012 Annual Meeting. The feasibility of the CARE study has previously been presented at the 2011 CAPS Annual Meeting. Results showed that gastrostomy in children not only aids in the child’s physical health, but also improves the mental health of the child’s caregivers, especially after one year.

 

A Qualitative Phenomenological Approach

A small qualitative study was also conducted as part of CARE. Interviews with 5 caregivers who took part in the CARE study were conducted using a phenomenology framework to further understand their experience. This qualitative study was presented as a podium presentation at the Canadian Association of Pediatric Surgeons annual meeting in 2011.

 

CARE In-Brief

A final knowledge dissemination activity is currently being undertaken which includes the drafting of a lay summary “In Brief” based on the CanChild model. This In Brief will summarize the final results of the CARE study in lay language and will be sent to all participating patients. This lay summary will also be made available in clinic for newly diagnosed patients as well as through the CARE website.

Resources

Publications

  • Pemberton J, Frankfurter C, Bailey K, Jones L, Walton M. Gastronomy Matters-The Impact of Pediatric Surgery on Caregiver Quality of Life Journal of Pediatric Surgery. 2013 May;48(5):963-70.
    http://dx.doi.org/10.1016/j.jpedsurg.2013.02.012.
  • Pemberton J, Nederveen J, Lamond A, Bailey K, Ratcliffe E, Walton JM. Feasibility of conducting a prospective cohort study in pediatric surgery: introducing the Caregiver Quality of Life of pediatric patients referred for feeding tube insertion (CARE) study. Journal of Pediatric Surgery 2012 May;47(5):999-1004.
    http://dx.doi.org/10.1016/j.jpedsurg.2012.01.058

 

Presentations

  • Walton JM, Pemberton J, Bailey K. Gastrostomy Matters-The Impact of Pediatric Surgery on Caregiver Quality of Life. Canadian Association of Pediatric Surgery (CAPS) Annual Meeting. Victoria, Canada. 2012-09-25. 2012 CAPS Meeting Program
  • Lui I, Pemberton J, Walton JM. Understanding the Impact of Child Gastrostomy Tube Placement on Caregiver’s Quality of Life: A Qualitative Phenomenological Approach. Canadian Association of Pediatric Surgeons (CAPS) Annual Meeting. Ottawa, Canada. 2011-09-25. 2011 CAPS Meeting Program

 

Poster Presentations

  • Walton JM, Pemberton J, Nederveen J, Bailey K, Ratcliffe E, Feasibility of Conducting a Prospective Cohort Study in Pediatric Surgery: Introducing the CARE Study. Canadian Association of Pediatric Surgeons (CAPS) Annual Meeting. Ottawa, Canada. 2011-09-23. 2011 CAPS Meeting Program
    CARE Feasibility Poster PDF
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