5. Effectively cleans hands with alcohol-based hand sanitizer
6. States when to clean handsJanuary 28, 2009—demonstrated hand washing techniques, gave “Respiratory: Stopping the Spread of Germs”—SQ, RN
August 1, 2010—review of hand washing—SQ, RNMay 30, 2009—both parent and child were able to demonstrate good hand washing techniques
August 1, 2010—redemonstrated good technique, postreview—parent and child

As it has become increasingly important to involve the child and the family in the self-management of CF, there has been an increased expectation that patients and families become an integral part of the CF care team. The CFF has encouraged people with CF and their families to become active participants in care and to become partners of their CF care centers. This participation is expected to help improve the quality of care for patients and ultimately to improve the care center.

The CF Foundation has suggested a framework for various levels of participation by patients and families. Individual CF centers have varying degrees of involvement, and since these levels build upon each other, increased participation can be implemented in gradual stages. The levels of patient and/or family involvement in a CF care center include

• patients or families as participants, wherein they may respond to surveys and questionnaires and/or be members of a focus group;
  
• patients or families as advisory board members, in which they may be involved as members of CF center committees or a specific center task force and/or may serve on advisory boards for the quality improvement team within the CF center;
  
• patients or families as active advisors or consultants, wherein they are active task force/committee members, faculty for staff education, participants at collaborative meetings/conferences, mentors for others (patients, families, or staff), trainers for other patients and families, and providers for staff orientation and/or work closely with the quality improvement team; and
  
• patients and families as coleaders, in which they may serve as facilitators, content experts, evaluators of the team, authors, and/or be members of the team as hospital/clinic employees (Cystic Fibrosis Foundation, 2006).

The nurse as a team member with direct contact with the entire family can play a vital role in identifying patients or family members to assist in the CF quality improvement activities. On the CFF’s Web site section about living with CF, it states “research has shown that if a person is more involved in their healthcare, they can get better results and feel more satisfied with that care” (CFF, 2010e). By working together as partners, CF care teams and patients can provide quality care that will help to make life better and longer for people with CF.

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