Presented by the Regional Center for Healthy Communities (Metrowest),

1. You’re Not the Only OneFindings from: “You’re Not the Only One” A Report to Inform the Development of Supports for Families and Friends of Those Using Opiates in Cambridge and Surrounding Communities. Presented by the Regional Center for Healthy Communities (Metrowest), a program of Mount Auburn Hospital, and Cambridge Cares about AIDS (Sept 2007)

2. “Never give up. Never give up on them because they’re people and they’re good people and they can change.”

3. Overview • Background • Methodology • Findings • The experience of having a loved one who uses opiates • Helping a loved one who uses opiates • Caring for the caregiver • Information • Information parents/friends want • Where they find information now • What they want to share with loved one • Current program and treatment successes and challenges • Participants recommendations for programs and treatment • Report recommendations: community settings and involving and engaging families in treatment

4. Background • Widespread increase in prescription drug abuse, including opiate-based medications (Oxycontin, Percocet) which leads many to heroin use (another, often less expensive, opiate drug).

5. Background • CCA Needle Exchange Program staff noted dramatic increase in opiate using 18-25 year olds starting in 2003, many of whom reported beginning opiate use with prescription medications. • Increase in calls from families and friends of these young opiate users to CCA looking for support which they were not able to find elsewhere.

6. Focus Group • To determine what support is needed, CCA and the RCHC (Metrowest) collaborate in 2007 to collect information from family and friends of those who use opiates through focus groups. • The purpose of the focus groups is to learn about how best to help family and friends of those using opiates by asking them about what information and support they need with the hope that this information will be used to shape the services that are offered.

7. Methodology Participants recruited personally by facilitators • Semi-structured • (question guide) • one-hour focus groups • Seven participants total Group 1 Family members (parents) • Group 2 • Friends • Audio-taped groups and • transcribed and analyzed • responses by theme

8. “I was embarrassed at first. I swear to God.” The Experience of Having a Loved One Who Uses Opiates.

9. Feelings of Shame and Loss of Trust • Difficult to discuss • Hard for family/friends to admit loved one has addiction. • Because of the associated shame, hard to be honest about the changes and to seek information. • Some reported a loss of trust in the person using opiates. Parents mentioned challenges of having loved one steal from them to support habit, and being unsure of when or if the loved one is actually getting help when they say they are (i.e. not knowing if the person was going to meetings).

10. “Don’t go away. Always let them know that you’re there…you’re a good person. There’s a great life out there. You can have it.” Helping a loved one who uses opiates

11. Suggestions for helping loved ones not in treatment and unable to stop using • Setting clear boundaries • Don’t give money • Don’t allow use of car • Take phone away • Sharing information about opiate-use risks and treatment options • Help the loved one to imaging a drug-free future • Openly recognizing loved ones’ small successes • Continuous expressions of love and support

12. “I mean you can be there for them and support them but if they’re not ready to stop, you can’t kind of put your life on hold and wait until they’re ready to stop.” Caring for the caregiver

13. Suggestions for taking care of yourself when a loved one uses opiates • Participate in Families Anonymous (one learns that you’re not alone in the struggle) • Talking to friends and family • Keeping busy • Not using drugs/ alcohol themselves • Spirituality and other meaningful activities (talk therapy, gardening, spiritual retreats, church).

14. “What I heard just crushed me and blew me away and I couldn’t believe what her life was like for the past year…” Information parents and friends report wanting

15. Drug Effects & Signs and Cycle of Addiction • Information on drugs, what pills were, signs and symptoms of use and withdrawal • Information on addiction, signs of addiction (in order to move more quickly from denial), and relapse (in order to prevent this) • Treatment options • How to locate and enter programs, differences between options, finding the right program (expressed difficulty in learning about and accessing treatment options). • How to live with the person who is using drugs • Following treatment, parents found information on developing a contract and being supportive while setting boundaries.

16. In Families Anonymous…“I got a lot of information …from people in the room about detoxes, about places they can go to dry out, get a program, get counseling, all from all different people. They have the same problem. They are very supportive.” Where Do Parents and Friends Find Information Now?

17. Talking to others with similar experiences (confirmation, support, aids in accessing information) • Newspaper columns (Dear Abby/ Ann Landers) • Television • Work • CASPAR • Family Anonymous Staff • Detox Facility • Internet (useful, anonymous. Helpful for topics like withdrawal and use signs and symptoms, sites like pillfinder.com) Suggestions for other places to share information • Commercials • Publication in newspapers (the Chronicle) • Doctor’s office lobbies and during visits • Schools, PTA meetings • Churches • Employment Assistance Plans

18. “My daughter actually looked me straight in the eye with him and said, “I can’t overdose on my OCs (Oxycontins).” She really believed that.” Information Parents and Friends Want to Share with Loved Ones.

19. Suggestions for information to share with a loved one: • Risks of addiction to prescription medications and other opiate use. • Support groups, detox and treatment options • Reported perception of a that a lack of information was prevalent among immigrant populations • Suggestions for ways to share information with a loved one or others: • Leave out information for the person to see • Send information through school newsletter, include in health classes at school

20. “it is separated, I think. There’s Family Anonymous and there’s what [the opiate user is] going through.” Current Programs and Treatment Successes and Challenges

21. Successes • Group structures like Families Anonymous • Challenges • Frustration that families and loved ones are often excluded from formal treatment process (which makes readjustment to co-habitation especially difficult). • Challenges of entering treatment: length of time to find potential treatment options; delays in admission make it difficult to access care when loved one is ready. • General feeling that length of time in treatment is too short. • Cost of treatment. • Challenge to find treatment in native language (participant reported that given the sensitivity of addiction counseling, interpreters alone would not suffice.)

22. “an inpatient treatment, where they went on an opiate replacement for a period of time but weaned off of it…with a support group [for] the family in the same facility… family meetings and then also parent support meetings... That would be my dream.” Participants’ Recommendations for Programs and Treatment

23. Treatment programs would be strengthened by catering to the needs of the person using opiates AND to partners/families. • Inpatient facilities where families are enrolled and receive services together and individually. • Locked facilities that allow daily visits or a solution more like couples counseling. • Parents imagine one-on-one treatment, supports in learning what to expect when son/daughter returns home, education around changing family dynamics and on what treatment is like for loved ones. • Massage and meditation

24. Improve wait time for treatment with a “treatment on demand” model, no waiting list. • No agreement on recommended length of treatment programs; suggestions ranged 6 months - 2 years. General consensus that current 3-5 day treatment modalities are insufficient. • Treatment facilities should be removed from the individuals usual environment (tranquil setting, away from friends who may be a negative influence). • Services in languages other than English would help to meet the needs of populations not currently being served.

25. Report Recommendations Based on the focus group information, the following recommendations describe support structures that could be implemented for families/friends of opiateusers both in informal community settings and within formal treatment structures.

26. Recommendations for Community Settings • Information about treatment options, telephone hotlines, signs, symptoms and cycle of addiction, and useful websites should be posted in local businesses, schools, doctors’ offices, on local cable, and city websites. • To increase support for parents/friends, helpful to actively prepare those in recovery or those participating in Families Anonymous to be resources for others experiencing similar situations. • Wherever parents, friends or opiate users are seeking services related to their addictions, there should be information about self-care for those with loved ones using opiates.

27. Involving and engaging families in treatment • Families and friends would like to be more actively involved in their loved one’s treatment. • Existing programs should consider ways to provide at a minimum: • Education for parents and friends about what loved ones are experiencing during treatments • Ideally, counseling that includes the whole family and residential programs with parallel tracks for those who are using and for their loved ones.

28. We would like to express our gratitude to the brave families and friends who participated in this effort, without whom the project would not have been possible. We would also like to express our thanks to the City of Cambridge, the funder of this project.Thank you!