From Their Hearts: Advice from Adolescents with a Parent in

Hospice

Denice Sheehan, PhD, RN

MNRS/STTI Research GrantCarly Jayne Ensley Award

Background and Significance

Research about parents with advancedcancer and their children focuses on Distress Functional changes within the family Economic burdens

Few studies have considered the opportunities for growth and healing at theend of life

Research Question

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

Methodology

Qualitative descriptive methods

Sample 10 Adolescents (12-18 years old) larger grounded theory study of 26

participants 9 families

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

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

Interviews Setting

– Home Audio taped and transcribed

verbatim Gratitude

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

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

Time is LimitedThe adolescents knew their parent

had a life limiting illness and would probably die within 6 months

Maintain NormalcyI’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

 

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

 

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

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

Give and Receive LoveI 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

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

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

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

Limitations All participants were from

one hospice Caucasian and African

American One interview

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

Thank you!