An Adult Cystic Fibrosis Couples Support Group: Reducing Isolation While Living with Life-Threatening Illness Video

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• Information about how cystic fibrosis affects their lives as individuals, and as couples, and how the 'non-cystic fibrosis partner' learns from others
• Skills at networking and personal coping strategies
• Reflections on 'family life and cystic fibrosis'
• Observations on ways cystic fibrosis care centers can join them in greater health partnership

One of the realities of a life-threatening illness can be that of social isolation, and of separation from others who share the same disease. Having the opportunity of participate in a support group can significantly reduce that sense of isolation and give the participants an ability to share experiences and give support to others with this disease.

Cystic fibrosis as an illness has growing ranks of 'survivors' who live longer, fuller lives, thanks to the advances made on multiple-research fronts. Historically, adults with cystic fibrosis have not had much occasion to share person-to-person experiences within the structure of their cystic fibrosis care centers. Justifiably, with the potential for cross-infection, the Cystic Fibrosis Foundation has urged caution for the cystic fibrosis population in having face-to-face interactions.

Protocols to Minimize Cross Infection

In 2004, UW Health's Cystic Fibrosis Care Center recognized this need for interaction and sponsored – with guidance from staff facilitators - an on-going adult support group. Prior to the formation of the group pre- and on-site group IC protocols were developed.

At the pre-group stage, the physician initially certifies that the patient is free from aggressive pathogens. Each time the patient RSVPs permission to attend a group session, the physician must 'recertify' this status. On-site protocols emphasize a number of IC precautions to minimize cross-infection.

The Center recognized that by developing such a support group, 'patient and family centered care' could be enhanced. A goal in the group's formation was to create 'mutually beneficial partnerships among patients, families, and health

care providers.'

Group Structure and Successes

The group is limited to 20 participants. Two cystic fibrosis care center staff act as facilitators. This is a support, not a therapy group. Formal topics are purposefully not pre-determined. The group’s success is predicated on the personal responsibility of each participant to bring topics/issues from their daily life experiences.

The group has gained identity and has evolved over three years into two separate groups: an individual cystic fibrosis group and a couples cystic fibrosis group. Ownership of these groups by those who attend is apparent. Both the care center and the couples support group are forums for learning 'how to live with cystic fibrosis.'

Future goals will call for using identified quality of life tools to measure psychosocial and emotional growth in individuals through their participation over time in the group.