SELF MANAGEMENT STRATEGIES OF PATIENTS ON CHRONIC DIALYSIS

Ma. Nisan T. Manauis, RN, MAN CRNC Board Member, RENAP

What does the FUTURE hold?

Patient Adaptation to Disease

Acute Diseases Chronic Diseases
Alerted to many complications

Seek medical help

Follow course of treatment

Manage medication regimen

ESRD Patient

Manage fluid restrictions

Do best to recover

Manage dietary regulation

Burks, 1999; Feste & Anderson, 1995; Holman & Lorig, 2000; Singleton, 2000

Self Management / Self Care

Individual's efforts to

advance optimal health prevent illness recognize symptoms as early as possible cope with or manage chronic conditions
self-monitoring and assessment symptom perceptions and labeling evaluation of severity evaluation and selection of treatment alternative
Easton, 1993; Woods, 1989

Can include:

Benefit of Self Management

Patients who engage in self-management of their disease and/or its treatment are more likely to enjoy improved health-related quality of life
(Horsburgh, 1999; Meers et al., 1996)

HEALTH RELATED QOL

QUALITY OF LIFE
SOCIAL & ROLE PHYSICAL & MENTAL

BIOLOGIC

Challenge to Self Management

One reason for the difficulty may be connected with Parsons' (1951; 1975) conceptualization of the "sick role.
Patients are to be relieved of their usual role responsibilities so that they can turn their energies to recuperation Patients are expected to seek appropriate health care and to follow the recommendations of their health providers to "get well" as quickly as possible.

Challenge to Self Management

Manner in which dialysis treatment is usually administered

Curtin, Roberta Braun; Mapes, Donna L; Thomas-Hawkins, Charlotte; August 2001

HEALTH CARE MANAGEMENT STRATEGIES OF LONG-TERM DIALYSIS SURVIVORS

Purpose
Explore the process by which long-term survivors of dialysis manage their illness, its symptoms, and its treatment Identify common characteristics, attitudes, beliefs, and behaviors among long-term survivors that may be related to their longterm survival

Study Method
Sample
Selected based on the unique knowledge, perceptions, and perspectives that they are presumed to possess ESRD patients who had been treated with any dialysis modality for a cumulative total of 15 or more years Recruited via a modified "snowball" technique: a few members of the phenomenal group were first identified and these members, in turn, identified others who could also be expected to be "informationrich"

Study Method
Sample
18 patients currently maintained on hemodialysis
8 patients reported having received peritoneal dialysis, and 3 reported having received home hemodialysis in the past 12 patients reported receiving kidney transplants; several receiving more than one DM not the primary renal disease

Demographics

Demographics

Study Method
Interviews
Topical, semi-structured interviews with key informants 2 to 6.5 hours Broad question that introduced the general topic Probes and open-ended follow-up questions were used to gently direct the discussion Audiotaped and fully transcribed

Findings
6 Self Management Strategies
Impression Management Selective symptom report and management Vigilant oversight of care Proposal of treatment by patient Confrontation of system--active self-advocacy Independent adoption of treatment/use of alternative therapies

Impression Management
Monitoring, manipulation, and deliberate management of self-presentation Orchestrating interactions with health care providers in an attempt to improve chances of receiving optimal care Actively projecting characteristics they thought were most valued or appreciated by providers

Impression Management
I am treated in a way that I would not put up with if I was in a different context. But because my life depends on them, I am quiet

You've got this problem where you will die if you don't have dialysis--you have got to go to this facility and depend on these people. Then you have to get along with them day in and day out, no matter what kind of people they are or what their competency is.

Selective Symptom Report and Management

Closely attuned to physical selves alert to the warnings of their bodies and subtle signals that something is wrong

Employing a kind of triage of their symptoms before deciding whether to report them to a health care professional or manage the situation on their own right

Selective Symptom Report and Management

... they know if I ever have a problem, I call `em. I mean, I don't sit around and wait for the month--the end of the month to tell them. I call them. I put them on the spot right away. So they pretty much always know where I am at. I say ... you are my doctor. You are in charge because you are my doctor. But when I talk to you, I want you to listen to me and give me the time, because I have been so many years in this business that I am very much in tune with my body.

Vigilant Oversight of Care

Attentiveness to the care that was provided to them by all levels of providers

Vigilant Oversight of Care

I think because of my high control needs, I've never been able to sleep on dialysis.... I think what it is, I'm afraid that I will die if I go to sleep. You know, I'm out of control and I am not watching what is going on and I just can't do it. I want to learn and I want to know. When I sit in that chair, I'm watching. You may see me lying back, but I'm watching, you know. I make sure there is no air coming back to the arterial line, because if they start fumbling with the bag and air is getting introduced into the line, you know. I'm always watching everybody.

Proposal of Treatment by Patient

Actively suggesting treatments, interventions, medications, or other alternative approaches to their care was reported by 15 of the 18 respondents

Proposal of Treatment by Patient

But I go, if I hear anything, you know--I always go to them and talk to them. I don't care what they say but I tell them if I heard this new--I heard this. And you know, they listen ... I don't know anything about the heart, but if I hear anything that, you know, that's new, I will ask the doctor too.

Confrontation of System - Active Self-Advocacy

Confronting providers either by declining a particular activity, treatment, intervention, or by insisting that treatments be carried out in what they considered the "correct" manner

Confrontation of System-Active Self-Advocacy

I watch them like a hawk. This one nurse I don't particularly like went--I felt like she needed to change her gloves before she came to me and she'd emptied all the garbage cans, and granted, all she had to do was tape me up, but I still didn't want her around me if she'd been emptying the garbage cans. And that takes a lot of--"oh god, how do I say it? Do I say it? Do I say it?" And so I say, "I don't think you should be touching me with it."

Independent Adoption of Treatment / Use of Alternative Therapies

When unable to obtain the treatments they felt they needed from health care providers via any of the methods already discussed, patients chose to be non - compliant with prescribed therapies or go outside of the system to get satisfaction

Independent Adoption of Treatment / Use of Alternative Therapies

I started tapering off my blood pressure meds myself and I would skip days so I was taking it every other day instead of every day. And my blood pressure stayed fine on the machine, so then I stopped taking it completely and my blood pressure behaved. So then I told my doctor about it instead of telling him ahead of time

Discussion
Health care Provider Patient Self Mgt

Healthcare System

Discussion

Nursing Tenet of Patient Dependency & Passivity

Strict Patient Compliance

Clinic Atmosphere Of Dependency & Passivity

BARRIER

Conclusion: Nursing Implications

SELF IMPRESSION UNMASK THE TRUTH

Conclusion: Nursing Implications

SELECTIVE REPORTING MANAGEMENT

SYMPTOM TRIAGE & BASIC SELF CARE

Conclusion: Nursing Implications

USE OF ALTERNATIVE THERAPIES OPEN COMMUNCATION TIME & INFORMATION

Roberta Braun Curtin, Dara C. Bultman Sitter Dorian Schatell, and Betty A, Chewning

SELF-MANAGEMENT KNOWLEDGE AND FUNCTIONING AND WEIL-BEING OF PATIENTS ON HEMODIALYSIS

Goal
Describe the association between hemodialysis patient self-management behaviors and functioning and well-being

Objectives
List self-management behaviors used by patients on hemodialysis. Compare and contrast protective/proactive self-management strategies & cooperative / participatory self-management strategies. Discuss the significance of patient knowledge and physical and mental functioning.

Method
Sample
372 patients from 15 facilities At least 1 year in dialysis and 18 y/o

Self Management Strategies

Suggestion of Treatment to Provider Adoption of Alternative Therapies to Manage Health Issues Selective Symptom Management Assertive Self Advocacy Impression Management Oversight of Care

Other Points of Interest

Sources of Information Acquisition Participation in Self Care Activities during Hemodialysis Time on Dialysis

Results

Results

Results

Results

Results

Results

Results

Results

Results

Results

Results

Discussion
The ability to measure selfmanagement strategies among patients on hemodialysis is an important first step toward assessing their involvement in their own care and treatment. The logical next step is to design and implement effective interventions to improve patient outcomes.

Discussion
Cooperative/participatory type of self management is both positively associated with physical functioning and is among the more often performed self-management activities.

Discussion
An equally important finding has to do with the protective/proactive self-management strategies that were less utilized.

Discussion
The five topic categories queried clearly relevant to patients on hemodialysis.
Anemia Diet and Medication Kidney Function Dialysis Treatment Rehabilitation

Practical Nursing Implications

Self Management Activity Survey is useful in identifying and characterizing the kinds of strategies chronic kidney disease (CKD) patients are currently employing in their attempts to self manage their care and to interact productively with their care providers

Practical Nursing Implications

Educational and counseling interventions might be initiated to help CKD patients improve their approaches to self management and to minimize their need for protective/proactive strategies

Practical Nursing Implications

The association bet. participatory strategies for selfmanagement & better functioning and those between the more protective / proactive strategies & poorer functioning underscore the importance of good communication between patients and the health care team on self management behaviors, physical and mental health functioning overall.

--NISAN MANAUIS