“I'm still dad”: The Impact of Scleroderma on being a Father

ABSTRACT

The purpose of this study was to describe the experiences of fathers with scleroderma. Ten fathers with scleroderma were interviewed by telephone. Interviews were tape-recorded and transcribed verbatim. Two key themes emerged related to the emotional impact of the illness and the day to day realities of the illness with the unpredictability and rareness of the illness leading to ongoing feelings of isolation and fear of mortality. The negative influences of being a father with scleroderma included the inability of the fathers to participate in physical activities with their children such as outdoor sports and throwing balls. Being able to spend quality time with the child was a positive influence of the illness.

KEYWORDS:

• Connective tissue disease
• parenting
• caregiving
• systemic sclerosis

Declaration of Interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Acknowledgments

We thank the fathers for their participation in this study, the Scleroderma Foundation and Linda Penazola PhD for her thoughtful comments. This research was supported in part by the University of New Mexico, Department of Pediatrics Research Allocation Grant to Drs. Poole and Mendelson.

About the author

Janet L. Poole Occupational Therapy Graduate Program, University of New Mexico, Albuquerque, New Mexico, USA.

Donna Haygood Department of Special Education, Bernalillo Public Schools, Bernalillo, Bernalillo, New Mexico, USA.

Cindy Mendelson Private Practice, Philadelphia, Pennsylvania, USA.