From Their Hearts: Advice from Adolescents with a Parent in Hospice Denice Sheehan, PhD, RN

1. From Their Hearts: Advice from Adolescents with a Parent in HospiceDenice Sheehan, PhD, RN MNRS/STTI Research Grant Carly Jayne Ensley Award

2. Background and Significance • Research about parents with advanced cancer and their children focuses on • Distress • Functional changes within the family • Economic burdens • Few studies have considered the opportunities for growth and healing at the end of life

3. Research Question What advice do adolescents with a parent in hospice have to offer other adolescents in the same situation?

4. Methodology Qualitative descriptive methods

5. Sample • 10 Adolescents (12-18 years old) • larger grounded theory study of 26 participants • 9 families

6. Demographics • Gender • 4 female, 6 male • Age • 12-18 years old • Race • 8 Caucasian, 2 African American • Annual Household Income • $10,000 or less to $90,001 or more • Time From Interview to Parent’s Death • 1-12 weeks

7. Recruitment • Researcher presented study at hospice team meetings • Study recruiters introduced study to potential participants • Study recruiters called researcher • Researcher called potential participants • Informed consent • Interview

8. Interviews • Setting • Home • Audio taped and transcribed verbatim • Gratitude

9. Qualitative Descriptive Analysis • The participants were asked to give advice to other adolescents with a parent in hospice • The facts of the event and the meaning participants ascribe to the facts are conveyed to others as straight descriptions of phenomena

10. Findings • Struggled to maintain normalcy • Offered advice about how to maintain balance in their lives and create positive memories within a limited time period • Described the importance of giving and receiving comfort, love, and help as well as learning as much as they could about their ill parent

11. Time is Limited The adolescents knew their parent had a life limiting illness and would probably die within 6 months

12. Maintain Normalcy I’d say try to be close to her and spend as much time with her as you can, but that’s not how I feel, so I don’t know. You have to, don’t stop everything in your life, like try to keep everything normal. Like I try to treat my mom the same and stuff. I don’t try to baby her as much as everybody else because if I were sick I wouldn’t want everybody acting funny around me. So try to act normal around her, but you have to be nicer at the same time. Just keep doing everything you were in your life like you did before and don’t stop everything. But I guess try to spend more time at home than you usually do. 16 year old daughter

13. Maintain Balance Like school, don’t just stop trying at school. If you’re playing sports don’t just give it up and just stop trying. Just stick with it. It’s fun. Sort of takes your mind off of it. 15 year old son

14. Create Positive Memories Take as much time as you can with them and make good memories. Try to let them have fun. Comfort them and have good times with them so they’re not always sad. They can laugh and have good times. Do stuff and make them feel young. 17 year old son

15. Give and Receive Comfort • Other kids out there, they need to not just hold it in until they die. They need to talk about it and cry about it because it’s okay to cry. And if they don’t cry and don’t talk about it it’s just going to devastate them when they do die. 13 year old son • Talk to your parents about it and figure out what you’re going to do. And ask them about their health because I didn’t know a lot of times what was going on and then I felt like I was out of the loop, but it was just because people were like, didn’t really think I wanted to know. I did want to know, it’s just that I didn’t know how to talk about it with them. So to figure out a way, or somebody to talk to that knows what is going on because if you don’t know what’s going on you’re not going to know what’s going on with your life because that’s part of your life. 17 year old daughter

16. Give and Receive Love I think the best thing to do is to try to make whoever’s sick feel comforted and let them know that you love them. The last real conversation that we had was when I went in the living room and sat down next to her and told her that I was sorry that I didn’t spend more time with her while she was sick. She told me not to be, that I was a good son and she was proud of me. Then we told each other that we loved each other. 17 year old son

17. Give and Receive Help • Let people help you when you need help, help other people when they need help. 13 year old son • Help your parent out, make him feel better. And do anything they want you to do. Help him out. 12 year old son

18. Learn as much as you can about your ill parent To try to spend as much time with them as they can, and learn as much about them as they can. And to express the way they feel about their parents while they can still understand them and respond… I wanted to know more about her [ill mother], like who she was when she was younger and why she is the way she is now. Just things that, just little facts that I never knew about her. That I wanted to know while I had the chance. 17 year old son

19. Implications for Clinical Practice Adolescents need guidance to • Maintain balance in their lives • Create memories • Give and receive comfort, love and help • Learn about their ill parent

20. Limitations • All participants were from one hospice • Caucasian and African American • One interview

21. Future Research • Grounded theory study to examine strategies adolescents and their parents use to help the adolescent in the final months of the ill parents’ life and to identify ways in which health care providers help the adolescent • Clinical assessment guide to help clinicians assess adolescents with a parent in hospice and offer intervention strategies

22. Thank you!