WORKSHOP GUIDELINES. People with hemophilia or another bleeding disorder Parents or caregivers of a person with a bleeding disorder

WORKSHOP GUIDELINES GOAL OF WORKSHOP The workshop, Home care: The road to independence, will provide an opportunity for people with bleeding disorde...
2 downloads 2 Views 89KB Size
WORKSHOP GUIDELINES

GOAL OF WORKSHOP

The workshop, Home care: The road to independence, will provide an opportunity for people with bleeding disorders to gain new knowledge and share experiences regarding how home care can empower them to maximize their quality of life.

TARGET AUDIENCE  

People with hemophilia or another bleeding disorder Parents or caregivers of a person with a bleeding disorder

WORKSHOP FORMAT

An interactive educational session which could include one or more of the following elements:  PowerPoint presentations: − Part 1 – overview of home care − Part 2 – home infusion techniques  panel discussion to allow people with bleeding disorders, parents and health care providers to share experiences and discuss issues relating to home care;  “hands-on” educational session on home infusion techniques (to be accompanied by PowerPoint presentation Part 2). The workshop could be offered at:  chapter family weekends or annual general meetings;  parent support group meetings;  HTC information sessions;  chapter/regional educational sessions. SUGGESTED SPEAKERS AND/OR FACILITATORS   

Local HTC nurse coordinator (see HTC listing on CHS Web site: www.hemophilia.ca) CHS provincial or regional staff member Consumers representing various perspectives (parent, child/adolescent with a bleeding disorder).

SAMPLE AGENDA

1. Opening remarks (see sample introductory remarks below) Chapter president or provincial/regional staff 2. PowerPoint presentations HTC nurse coordinator 3. Interactive session Option # 1 Panel discussion – Getting started | Issues around home infusion (see suggestions below) OR Option # 2 Home infusion techniques (see guidelines for nurse coordinator below) 4. Evaluation of workshop (see sample evaluation below) 5. Closing remarks (see sample closing remarks below) Chapter president or provincial/regional staff

Sample introductory remarks “Welcome to the workshop Home care: The road to independence. The presentation is one of the modules from the Canadian Hemophilia Society program : Passport to well-being designed to empower people with bleeding disorders to maximize their quality of life. The goal of this workshop is not to provide all the answers on home care. Embarking on home care requires clear directions and signposts along the way. It is a road that can be safely navigated … with the help of guides on your journey—the members of the comprehensive care team at the bleeding disorder treatment centre (HTC).” Begin PowerPoint presentation (distribute hand-out of slides for note-taking)

Option # 1: Suggestions for panel discussion Getting started on home care MODERATOR 

HTC nurse coordinator

PANELISTS   

HTC social worker Two or more parents of a child on home care program Young consumers aged 16-22 male or female who are self-infusing

SUGGESTED DISCUSSION TOPICS

1. Overcoming roadblocks to home care Part I: Encourage participants to verbalize their fears and perceived difficulties; use an easel with a participant recording responses such as: − − − − − − − − − − − − − −

− − − − − − −

failure with venipuncture and needing to go back to the hospital screwing up losing my child’s confidence/child resenting me if I am not successful poor assessment or missed bleed not recognizing a serious bleed inability to cope at home hurting my child damaging a vein causing infection not being able to do something so professional causing a blood clot not being able to cope with an allergic reaction not recognizing an inhibitor accidents with the needles ie; children getting them, not put in a safe sharps container panicking when it’s a serious bleed lack of home support lack of ability lack of organizational skills lack of hospital support, nursing, hematologist, physiotherapist lack of community support conflict of information from the consumer group and the health care team

Part II: Encourage participants to share their solutions for conquering fears and achieving success; use an easel with a participant recording responses such as: −

− −





− − −

− − −

Meet with your nurse coordinator and other team members to explore perceived difficulties Ask questions Connect with others who have conquered their fears and are on home care Become a more active participant in your child/caretakers experiences take on small responsibilities such as mixing product, putting on tourniquets, etc Learn the smaller steps and progressively move onto larger responsibilities when comfortable Use the resources that are available to you for learning Go to clinic regularly Continue to get support from the health care team until you are comfortable on your own Be proactive in finding answers to your own questions Seek positive feedback from the people that you are learning from Successes with attempts and experiences involving home care

2. Tips for successful venipuncture and for keeping veins healthy Panel members would share experiences.  Find three or four veins that are easy to access. Use these in rotation to keep veins healthy.  Veins are larger and easier to see when a person is warm. Before infusing… − do some exercise; − take a warm shower or bathe the arm in warm water or apply a warm compress for 5 to 10 minutes; − dress warmly or use a warm room in the house.  Increase blood flow into the arm before applying the tourniquet… − hold the arm below the heart to fill the veins with blood. − squeeze a rubber ball.  Apply the tourniquet for 2 to 3 minutes. After this, the vein will shrink.  Ask the staff at the HTC to suggest exercises which develop good veins.  Remember. Practice makes perfect … or almost perfect. Everyone misses now and then.

Option # 2: “Hands-on” educational session - Home infusion techniques Guidelines for nurse coordinators O B J E C T I VE S 

  

Teach individuals with hemophilia, or their caregivers, the technique of preparing factor concentrate and I.V. infusion, while promoting the creation of bonds between individuals who are experienced in home infusion and beginners. Benefit from individuals who have mastered the technique by sharing their knowledge and experience. Reassure beginners about the option of I.V. infusion of factor concentrate at home. Teach the infusion technique to several people at the same time, while providing adequate supervision for all.

EQUIPMENT AND SET-UP    

  

A room of suitable size for the number of people registered in the workshop. Sufficient lighting, natural light if possible. Adjustable lamps may be helpful. A sink with soap and paper towels nearby. A large table or several small ones, and enough chairs for all participants. Material needed for preparing product and injection arranged on the table before the workshop starts: alcohol swabs, syringes, contaminated needle disposal unit, several wastepaper baskets, tourniquets, etc. Expired product may be made available to the participants as well as saline. A mannequin arm may be laid out on a separate table. A screen and audiovisual equipment to project PowerPoint.

METHODOLOGY

When the workshop is announced, ask experienced people to pair up with someone who is learning home infusion. For example, parents of children who have been treated for several years with parents of recently diagnosed children, and young adults with adolescents who want to start self-infusing. If possible, ask the participants in advance to adjust their preventive treatment schedule so that they can prepare and infuse themselves with product they have brought to the workshop. First part Using the PowerPoint presentation Part 2 on home infusion techniques, review the various steps in preparing product and intravenous injection. Stress different ways of applying principles of asepsis and cleanliness outside the hospital. Ask experienced people in the room to share different methods they use to treat themselves or their child comfortably and safely. Touch on such issues as lighting, the right moment, participation of siblings. Be careful not to extend this part too long. Limit your presentation to 20 or 30 minutes to avoid encroaching on the second and third parts.

Second part Demonstrate how product is prepared and ask participants to prepare their own product at the same time. The expired concentrate may be used by people who do not plan to infuse concentrate at the meeting. Explain each of the steps aloud, and wait until everyone is ready before going on to the next step. Answer questions as they come up. Ask people to pay attention and wait until the end of the answer before asking another question. When all participants have finished preparing their product, you can go on to the third part. Third part Ask beginners to prepare to self-infuse with supervision from their experienced partner. N.B. Make sure that you tell people who have prepared expired concentrate to throw it out immediately and use saline to infuse themselves. Go around to all the participants and supervise the teams, especially at the crucial moment of inserting the needle into the vein. Encourage experienced individuals to share their tricks and techniques. Suggest that parents practice on themselves or one another before infusing their child. Have those who are still afraid of puncturing the skin practice the steps in inserting the needle on a mannequin arm. Constantly remind people to change the needle for a second attempt, and dispose of contaminated needles in a needle disposal unit. Congratulate those who are successful and help the ones who fail change their technique. Conclusion People generally come out of this workshop with a sense of pride in what they have accomplished thanks to support and encouragement from the nurse coordinator, family members and their partners. Their self-esteem gets a boost, while ties with the rest of their family are strengthened and new ties are created with people who are experiencing a similar situation.

Sample closing remarks  Thank speakers and participants for attending  Collect evaluations  Hand out – Home care: The road to independence booklet

HOME CARE: THE ROAD TO INDEPENDENCE WORKSHOP EVALUATION Your feedback helps us to improve the quality of our programs. Please take a few minutes to reply and give your comments. 1. The format of this workshop involved PowerPoint presentations followed by interactive sessions relating to home care. How would you rate the effectiveness of this format? 1 Poor

2 Fair

3 Average

4 Good

5 Excellent

2. How well do you feel this workshop addressed relevant issues relating to home care? 1 Poor

2 Fair

3 Average

4 Good

5 Excellent

3. What part(s) of this workshop were helpful to you? _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ 4. Comments or suggestions for future workshops on this topic. _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ 5. Please indicate your role within the bleeding disorder community: a) person with hemophilia:

FVIII deficiency _____

b) person with von Willebrand disease _____

FIX deficiency _____

Type _____

c) parent/caregiver of a person with hemophilia or VWD _____ d) HTC health care provider: nurse _____ physiotherapist _____ e) CHS staff:

clinic director _____

social worker _____

national _____

provincial _____

other _____ regional _____

Suggest Documents