How Adolescents Manage Living with a Parent Experiencing Chronic Non-Cancer Pain Wendy Umberger PhD PMHCNS-BC* Donna Martsolf PhD RN** Ann Jacobson PhD

How Adolescents Manage Living with a Parent Experiencing Chronic Non-Cancer Pain

Wendy Umberger PhD PMHCNS-BC*Donna Martsolf PhD RN**

Ann Jacobson PhD ACNS-BC*Judy Risko MSN PMHCNS-BC*Mary Calabro MSN PNP-BC*

Mary Patterson MSN ANP-BC****Kent State University, College of Nursing. **University of Cincinnati, College of Nursing *** Cleveland Clinic Foundation

Support for this study was obtained from Delta Xi Chapter, Sigma Theta Tau and Kent State University Research Council.

Effects of Parental Chronic Pain

on the Family System Role dynamics change Family life constricts Emotional sequelae emerge Children are impacted

• Parentification• Risk for illness behavior• Poorer overall adjustment, emotional

development

Barkmann et al., 2007; Evans et al., 2007; Kaasboll et al., 2012; Lewandowski et al., 2007; Mikhail & von Baeyer, 1990; Smith, 2003; Soderberg et al., 2003.

Purpose

To develop a substantive theory that describes how adolescents manage the experience of living

with a parent suffering with chronic non-cancer pain and how that process is affected by critical

elements in their personal environment

How do adolescents manage living with parents who experience chronic pain?

What psychosocial and/or environmental processes help and hinder how adolescents manage living with parents who experience chronic pain?

Research Questions

Grounded theory

Young adults (18 to 22 years) who experienced living as an adolescent with a parent experiencing chronic pain

Recruitment• Fliers in community settings• Ad on the American Chronic Pain Society

website• Snowball sampling

Design and Sampling

Sample (N = 30)

Gender• Female = 21(70%)

Race• American Indian =

1(3%)• Asian = 3(10%)• African American =

5(17%)• White = 21(70%)

Age• M = 20.3 (SD =

1.34)

Parent with Pain• Mother = 19(63%)• Father = 11(37%)

Pain Duration• M = 140 months

(SD = 69.07)

Parent Pain DiagnosesPain Diagnosis n(%)

Arthritis 12(40%)

Fibromyalgia 6(20%)

Migraine 5(17%)

Herniated Disc 4(13%)

Degenerative Joint Disease 3(10%)

Diabetic Neuropathy 3(10%)

Fractured Vertebrae 3(10%)

Carpel Tunnel 2(7%)

Crohn’s Disease 2(7%)

Lupus Erythematosus 2(7%)

Complex Regional Pain Syndrome 1(3%)

Multiple Sclerosis 1(3%)

Paraneoplastic Syndrome 1(3%)

Data Analysis

Open-ended interviews were audio-taped and transcribed

A group of experts met weekly over a 4 month period• Constant comparative analysis• Lengthy memos and theoretical notes

Findings presented to an interdisciplinary team of experts in chronic non-cancer pain and feedback incorporated

Basic Psychosocial Process: The Shroud

PARENTAL SHROUD-Shroud minimally obscures parent from adolescent

Shroud has fleeting presence in parent’s life

Shroud completely obscures parent from adolescentShroud has pervasive

presence in parent’s life

+

Parent Shrouded Chronic pain (or other aspects of chronic

pain, such as depression or excessive medication use) obscures authentic, true parent• Parent is “hands off” physically and/or

emotionally• There is “dis-involvement” with the adolescent

Parent’s mood is irritable, hostile, labile , and/or unpredictable with aggressive communication

Parent refuses to talk about pain problem

Parent does not care for self

Exemplar: Parent Shrouded

“It hindered how much hands on she did with us . . . My mom became more like involved in herself and introverted . . . It was hard growing up because I felt like my mom was just selfish and just didn’t want to spend time with us kids and didn’t want to be involved. Like she never went to any of the sporting events or anything like that, wasn’t involved with our schooling. So kind of thought she was hands-off.” (Participant 8)

Parent Unshrouded

Parent is physically and emotionally available to the adolescent

Parent “pushes through the pain”

Parent gives adolescent information about the pain

Parent cares for self physically and emotionally

Exemplar: Parent Unshrouded

“He pushes through it pretty hard. Like he denies it when you’re talking to him in a conversation. I mean unless you just ask him, ‘Are you in pain?’ And then he’ll just like say that he’s in pain, but that he doesn’t really describe it because he tried to think about other things . . . You could just tell that he was struggling to do some of the things, but he’d do them anyway. And you could see he’s pushing through it.” (Participant 25)

ADOLESCENT SHROUDShroud minimally conceals

adolescent’s thoughts, feelings, needs

Shroud completely conceals adolescent’s

thoughts, feelings, needs- +

Adolescent Shrouded

Adolescent conceals his/her authentic, true self (thoughts, feelings, needs) to parent• Shroud can be exhibited in various forms, such

as silence, perfectionism, and substance use

Adolescent may shroud because of fear of increasing parent’s stress and/or pain

Shroud is more than developmental issues related to separation/differentiation from parent

Exemplar: Adolescent Shrouded

“I feel like we just never talked about it, like it was the elephant in the room that nobody wanted to say anything about, but I feel if someone would have just spoken up and said like, ‘This is an issue and this is affecting things. We may have to make adjustments and work around it.’” (Participant 21)

Adolescent Unshrouded

Adolescent reveals (verbally and nonverbally) his/her true, authentic self to parent in pain and/or significant others inside/outside the home

Adolescent discloses to parent with pain his/her thoughts and feelings related to living with a parent with pain

Adolescent asserts his/her needs to parent with pain

Exemplar: Adolescent Unshrouded

“There’s been a couple of times where like especially with the whole decision thing. I just told her that you know I’m her daughter and I’m not her doctor and I’m not her nurse. Because there were some times when I was very blunt and there were sometimes when I was really nice about things, but it’s just all the ways I was handling it. Just because I didn’t want to be responsible for making the wrong decision and have her blame me.” (Participant 15)

PARENTAL SHROUD

ADOLESCENT SHROUD

Shroud minimally obscures parent from adolescent


EnduringDistancingLamenting

Shroud completely obscures parent from adolescent

Shroud has pervasive presence in parent’s life

Shroud minimally conceals adolescent’s thoughts, feelings, needs

Shroud completely conceals adolescent’s thoughts, feelings, needs

-

-

-+

+

Enduring

Adolescent bears a hardship as a result of living with the parent with chronic pain• Takes physical care of the parent• Works outside the home to support family• Worries about the parent not caring for self• Assumes a parental role before he/she is ready

and able, (e.g., decision-maker)• Experiences reoccurring disappointments• Feels intimidated by parent’s mood changes• Questions whether he/she is to blame for

parent’s pain• Experiences helplessness and confusion

Exemplar: Enduring

“She would teach me how to shut the door and then slowly turn the knob so then you don’t hear the clicking of the cupboard as loud. Like, ‘Don’t pour cereal into the bowl so loudly.’ I just know how to be so quiet. And then just like walking, ‘Don’t drag your feet.’ I don’t even know, just do everything real slow, ‘Don’t slam the cupboards, don’t leave,’ the kitchen has swinging doors, ‘Open the door, walk through, shut it behind you, don’t let them swing, don’t run up the stairs.’” (Participant 10)

Distancing

Adolescent physically retreats from the parent with pain

Adolescent distances him/herself emotionally from parent ( e.g., grows insensitive to parent’s pain complaints [pokes fun out of the parent], cuts self off emotionally from parent, vows never to be like parent)

Exemplars: Distancing

“Just don’t talk to her, keep to myself. Or if she keeps on arguing with me, I argue back with her but most of the time I don’t talk to her. I don’t say nothing. . . Sometimes I just try to get out of the house and hang out with my friends and keep my mind occupied or whatever.” (Participant 6)

“Just kind of have to step back and just let it go . . . Just step back.” (Participant 9)

Lamenting During periods of significant parental shrouding,

adolescent:• Mourns the loss of the true, authentic parent• Mourns the loss of “normal” childhood• Questions whether parent cares about and/or

loves him/her

Adolescent anticipates losing the parent because of illness and other losses related to parent’s pain (e.g., parent won’t be present at important future events)

Adolescent experiences sadness watching parent suffer in pain

Adolescent anticipates his/her own pain problems in the future

Lament is manifested by a range of feelings (e.g., sorrow, anger, guilt, shame, frustration, fear)

Exemplar: Lamenting

“‘Does my dad not care? Does my dad not love me?’ . . . All the neighbor kids, their dads are out throwing the ball or playing basketball and things like that and it was just us kids, you know. So it was hard.” (Participant 30)

PARENTAL SHROUD

ADOLESCENT SHROUD



ReceivingEmpathizingLamenting





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-

-

+

+

Receiving

Adolescent receives parenting and nurturance from his/her parent with pain

Adolescent enjoys time spent with the parent with pain

Exemplar: Receiving

“One time she went outside to play basketball with us and the neighbor boys . . . She threw the basketball really funny over her head, both hands on the ball, and just went like, ‘High Ya,’ and it went in. And everyone thought she was just the coolest mom ever.” (Participant 10)

Empathizing

Adolescent puts himself/herself “into the parent’s shoes” and tries to see the world “from parent’s eyes”• Imagines what the parent in pain may be

thinking or feeling• Recognizes the motives behind parent’s

behavior• Develops insight into the complexity of the

parent’s pain problems

Exemplar: Empathizing

“So it basically just took a lot of sitting down and thinking and realizing that she isn’t always in total control of herself because of her pain. I like to compare it to a wounded animal. You know, an elephant is one of the kindest creatures you’ll ever meet but if it’s wounded it can do a lot of nasty things to people or whatever is close by, living or non-living, it will destroy because pain will make it irrational. And I believe the very same thing does apply to human beings.” (Participant 4)

Lamenting

Adolescent anticipates losing the parent because of illness and other losses related to parent’s pain (e.g., parent won’t be present at important future events)

Adolescent experiences sadness watching parent suffer in pain

Adolescent anticipates his/her own pain problems in the future

Lament is manifested by a range of feelings (e.g., sorrow, anger, guilt, shame, frustration, fear)

Exemplar: Lamenting

“With rheumatoid arthritis you can’t do things that well with your hands. And she can still do things but it hurts for her to open stuff. And I always think like on my wedding day, I want her to be able to zip my dress up, but I don’t know if she’ll be able to do it. And stuff like that. I think about that kind of stuff or when I have kids, if she’ll be able to pick them up and things like that.” (Participant 19)

PARENTAL SHROUD

ADOLESCENT SHROUD









-

-

-SHEDS THE SHROUDFeeling heard

Feeling Disregarded

Tension Builds

+

+

Shedding the Shroud

A crisis, climax, or critical juncture between a parent and adolescent who are both heavily shrouded• It is precipitated by a building of tension

between the adolescent and parent, and/or within the adolescent

• The adolescent unmasks his/her authentic thoughts, feelings, and needs to the parent who is shrouded

• Parent can “hear” adolescent and respond to adolescent’s thoughts, feelings, and/or needs or “disregard” adolescent’s thoughts, feelings, and needs

Exemplar: Shedding the Shroud

“And so I was like do you even care about what I have to say or do you even care about what I’m feeling because a lot of the times and during the times whenever she vents she talks a lot about how she feels and even when she’s not venting she’s always like, ‘I feel horrible’. . . And you know I did say mean things to her that night . . . I had felt bad about it, so I went over later to apologize to her and she completely ignored me. And then after a little bit she told me to go and ‘I don’t care about you and I don’t like you anymore, don’t talk to me,’ and I cried for hours that night because it was just, I felt like I got shot, you know what I mean? It was horrible and I think that’s got to be probably one of the biggest turning points to where I started to grow more and more distant from her.” (Participant 4)

PARENTAL SHROUD

ADOLESCENT SHROUD









-

--

SHEDS THE SHROUDFeeling heard

Feeling Disregarded

Tension Builds

SIGNIFICANT OTHERS

Filling Gaps

Distancing

-

+

+

Filling the Gaps

Adolescent seeks out and leans on significant others inside and/or outside the home to meet his/her needs• The needs being met (or “gaps being

filled”) are those that the shrouded parent is unable to meet

Exemplar: Filling the Gaps

“I actually met a lady who was my mom’s best friend. And she was an unbelievable woman. And I just kind of adopted her as my mom and she wanted me to call her mom. And I was there almost everyday of the week. So we just hung out down there and she just really helped me know of pick up those holes where I felt that my mom’s not getting involved with.” (Participant 8)

Distancing

Adolescent isolates self from significant others inside/outside the home• Feels alone• Feels misunderstood• Feels different

Exemplar: Distancing

“I think it was like a trust issue for trying to express who I am and find a place where I can belong. . . I do think it was lonely. I did feel kind of that I don’t fit. I felt that my peers looked at me differently because I work more than any kid.” (Participant 13)

Implications for Practice

Work on parent-adolescent communication

Assist adolescent with grief work

Connect adolescent with support networks, especially those from single parent homes

Refer parent with pain to multidisciplinary pain management/rehabilitation program • Diagnose and treat co-morbid psychiatric illness• Diagnose and treat iatrogenic addiction

Implications for Research

Understand the relationships between core processes grounded in data within this study • The shroud• Ways of understanding parental pain• Lessons learned

Understand more fully complex communication and interaction processes within the family experiencing chronic non-cancer pain

Develop and test evidence-based interventions to help adolescents manage living with a parent experiencing chronic non-cancer pain

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Documents

How Adolescents Manage Living with a Parent Experiencing Chronic Non-Cancer Pain Wendy Umberger PhD PMHCNS-BC* Donna Martsolf PhD RN** Ann Jacobson PhD