Families and the Life Transition of First-Time Mental Illness: Swept Along on the Waves

1. Families and the Life Transition of First-Time Mental Illness: Swept Along on the Waves

2. Funded by Sigma Theta Tau, International

3. Objectives • Following this presentation, participants will be equipped to: 1. List at least 3 sources of family uncertainty at the initial hospitalization of a family member on a psychiatric unit, 2. Cite examples of at least 3 management strategies used by families in this study, and

4. Objectives 3. Discuss at least two interventions for mental health professionals when assisting families who have a hospitalized family member with a psychiatric illness.

5. Starting Research • Background • Why

6. Family

7. The Question • How does the family manage the uncertainty of a first time hospitalization of mental illness in a family member?

8. Who • Patients (over age 18) hospitalized for their first acute mental illness • Patient diagnoses included those with psychotic features, such as Brief Reactive Psychosis (usually several diagnoses) • Families present at the hospital • English speaking

9. Family Definition • Those immediate members who designate themselves as having close emotional bonds and meeting basic needs of the designated patient (Gilliss, Highley, Roberts, & Martinson, 1989) • Present in the hospital with the patient • Family included parents, in-laws, spouses, and siblings.

10. How • Depth interview • Done at the hospital • 1st - all family members present at the hospital • Next – each individual family member available • Tape recorded, transcribed

11. Qualitative Methodology • Depth interview • Blumer’s symbolic interactionism • Emphasizes importance of meaning and interpretation • Occurs during the interactions • Coding is by patterns

12. Demographics • 16 families • 30 individual members • 11 spouses • 11 parents • 3 siblings • 4 children • 1 friend

13. Demographics • Most families lived within 50 miles of the medical center • 11/16 lived in a small town

14. Demographics • About the patient- • mean age=36.6 (range 20-55) • Most common diagnoses • Depression with psychosis (8) • Delusional disorder (5) • Manic-depression (4) • Acute psychosis (4)

15. Life Transition • Life transition= hospital event intruding into every aspect of the family's world and a sense of the family being altered from what it was previously (Selder, 1989)

16. Becoming Aware • Awareness over time • Knowing something was wrong • Not knowing what to do • Symptoms became severe • Turning point leading to hospitalization

17. Seeking Help • "So then he, I went out to the park and he couldn't talk. Everything was brain waves and psychics and he couldn't go into ____ [their home] because psychics were giving him too much power and he couldn't..... Well, then I knew it's, something had to be done. I could see tears in his eyes, like, 'Oh, please help,' you know. So I said, 'Well, the only thing I can do is take him to the emergency room."

18. The Hospitalization Reaction – unreal: • "You know, how are you supposed to take this. Is this for real or what?" • or, "...Is this really happening?"

19. Sources of Uncertaintyfor Families • About the patient’s hospitalization • Do the right thing? • Guilt • "We were scared and, God, he shouldn't be here, you know, I want him home, but yet I didn't, I know he's not, he can't come home...."

20. Sources of Uncertaintyfor Families • How to deal with patient symptoms • What to say? • How to react? • How much to visit? • "...and you carry ... on a superficial ...conversation, you know, 'How's the weather?', 'What's going on?', that type of thing. But how much do you say or what do you do that you're going to be making it better or helping him?"

21. Sources of Uncertaintyfor Families • Naiveté about mental illness • Compared with physical illnesses • No past experiences • "I just wanted to go in and say, 'Hey, you know, how can I deal with this?' or you know, 'How can I deal with him and what kind of cues can you give me to help me get through this time?'"

22. Sources of Uncertaintyfor Families • What to tell others • Small community gossip • Telling children "And then, too, I mean mental illness, it's always been made fun of, I mean, from where I've been around, you know, 'He's flipping out' or those kinds of comments and stuff. And then, it's kind of embarrassing. I mean, people ask you, "well, what happened to him? He flip out?'... I don't know how to answer that.”

23. Sources of Uncertaintyfor Families • Concern about the future • What is prognosis? • Patient’s future? • "You can't control it [mental illness]... . And there's no guarantees. You want a guarantee, you want an iron-clad thing saying, 'Okay, she takes this, this, and this, and then she's fine' you know, and you won't ever have to worry about this. We don't have that."

24. THE FAMILY Creating Options Sorting it out Establishing Boundaries Normalizing

25. Management Strategies • Sorting it out • A process to decrease uncertainty when families had no control over patient’s illness

26. Sorting it Out • Comparative testing • Measuring self against identified model • Biographical • Compared this hospitalization with previous life experiences • "Well, I had a heart attack and they could open that up and fix it. With him [the patient] it's mind baffling to me."

27. Sorting it Out • Seeking information • Finding sources about M.I. • "You know, the more information you get, the better it seems to be.... But when things are explained, it really alleviates a lot of fear."

28. Sorting it Out • Story telling • Construction of narrative to review recent events leading to hospitalization • Helped to make sense out of the situation

29. Sorting it Out • Seeking the key • Finding causes for the M.I • "I was a detective. I thought, 'Hey, I got the key. I'm going to get him out of here'"

30. Management Strategies • Establishing boundaries • Demarcating, making distinctions among competing demands • "And I get frustrated, because, it's like, well, I have to worry about her [young daughter] and I have to worry about him [the patient], and then I have a cat running around that wants my attention...." • Consisted of Rumor Control & Time

31. Management Strategies • Boundary - Rumor Control • Limit how information given and to whom • "The people I wanted to know, I told...."

32. Management Strategies • Boundary – Time Boundaries • Limit focus to present, not future • "I know that counselor [the patient's] gave me a handout as to some support groups, but I don't know if I really, I don't think I want to get into that quite yet. Maybe that's something later down the road..."

33. Management Strategies • Boundary – Time Boundaries • "I'm more concerned about now. And, uh, dealing with now, and, ah, maybe the future will take care of itself in the process, hopefully. But, you know, those, this conversation that ____ [the other parent] and I have had, and, what if, you know, what if, what if. But obviously our emphasis is on now."

34. Management Strategies • Normalizing • Engaging in behaviors that mirror established standards by your own group • Consisted of 3 types: • Coordinating others • Establishing a family routine • Normalizing patient’s symptoms

35. Management Strategies • Coordinating others • Making arrangements to bring order to the family • Who would visit the patient, when • Calling others to care for children, animals at home when gone • Work coordination

36. Management Strategies • Establishing a family routine • Regulating family schedules • Attempts to minimize family disruptions • "I'm trying to keep... the kids as normal as possible.“ • "...because this [hospitalization] was going on and with the …kids, you always have at least three balls up in the air.... So we made it to her [daughter's] basketball game late."

37. Management Strategies • Attempts to normalize the patient’s symptoms • Ways to view pt. symptoms as standard behavior mirrored by psychiatric community

38. Management Strategies • Attempts to normalize the patient’s symptoms • "So I just stopped her nurse in the hall and talked, ... and just talking to her helped, I mean, it kinda, she was explaining how this was... people have done this [behavior] before, and, yeah, we see this, and it was no big deal to her, anyway, because it's, quote, unquote, typical, if there's such as thing."

39. Management Strategies • 3 strategies used to createnew options to manage uncertainty: • Test options • Relinquish care • Work options

40. Management Strategies • Creating Options • New options used by families to manage the M.I. • Testing options • Tried new ways to talk to pt “I basically mothered him…I still have to say to him, “no, you can’t do that’ or ‘it’s time to get up now’”

41. Management Strategies • Creating options • Relinquishing care to others • Giving up care to unit staff • “I can’t do anything while he’s in here, really. So, sometimes I feel like I’m more of a hindrance when I’m here than a help” • “I was so worried about him [pt.], and I thought….”heavens, he’s here, he’s in good hands’”

42. Management Options • Creating options • Work options • Tried methods to alter workload • Unable to concentrate at work • Relied on work colleagues • Changed schedules

43. Implications for Health Care Providers • UNDERSTAND families • Events leading up to the hospitalization (lack of sleep, vigilance, etc) • Lack of mental illness information or experience • The family is disrupted with this illness of one member • Uncertainty about many things

44. Help families with information Who to include in teaching May not want all ed materials now Implications

45. Implications • Assist families with boundaries • Don’t need to visit all the time • Realize their home demands • Assist with rumor control • Follow confidentiality policies

46. Implications • May need 1 family “communicator” to others in the family • Encourage them to tell their story about events leading to the hospitalization and about the patient

47. Implications • Role model how to talk to the patient • Assist families with what to say, when, how • "So from 1 to 5:30 we had no idea if we were doing the right thing. We were just talking. He was emptying himself out....it was terrible....You know, how are you supposed to take this?" • Doctor’s advise: "just save it for the doctor and let's go and think about something else to talk about, or the kids or...."

48. Implications • Consider the family’s developmental stage • Family with young children • Family with adolescents • Launching children & moving on • Carter & McGoldrick (1980). The family life cycle: A framework for family therapy

49. 2 Stages of Families

50. Implications • Note any ways to help families decrease their uncertainty • They feel a loss of control, as they are being………. Swept along on the waves