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Documenti di Professioni
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H EALTH C ARE
F OU NDATION
August 2009
Sharing the Care:
The Role of Family
in Chronic Illness
Prepared for
California HealthCare Foundation
by
Ann-Marie Rosland, M.D., M.S.
August 2009
About the Author
Ann-Marie Rosland, M.D., M.S., is a lecturer of internal medicine at the
University of Michigan in Ann Arbor and a research investigator at the
Center for Clinical Management Research, Veterans Affairs, Ann Arbor
Healthcare System.
Acknowledgments
For taking time to discuss their innovative work with patients and
families and for generously sharing resources, I thank:
Veenu Aulakh, California HealthCare Foundation
Patricia Clark, Georgia State University School of Nursing
Sandra Dunbar, Emory School of Nursing
Lawrence Fisher, University of California, San Francisco
Lynn Martire, University of Pittsburgh
Nancy Morioka-Douglas, Stanford University
John Piette, Ann Arbor VA HSR&D, University of Michigan
Stephen Sayers, Philadelphia VA HSR&D, University of Pennsylvania
Ranak Trivedi, University of North Carolina
Sharon Utz, University of Virginia
Corrine Voils, University of North Carolina
Ishan Williams, University of Virginia
Christal Willingham, National Family Caregivers Association
4 II. Introduction
23 X. Conclusion
25 Endnotes
I. Executive Summary
This report is intended to As the number of adults with chronic illness
increases, family members could provide needed support for their
provide background information,
care. Although many providers, health care systems, and policymakers
experienced-based insights, are interested in developing programs to mobilize family members,
there are few resources to guide them.
case examples, and further
This report is intended to provide background information,
resources for those interested in experienced-based insights, case examples, and further resources for
those interested in enhancing family involvement in chronic care
enhancing family involvement in
management. It draws on the authors review of published medical
chronic care management. literature, general Web searches, and conversations with program
developers and researchers in the fields of social support and family
involvement in chronic illness care.
A variety of family intervention programs have been developed,
and three of these are described in the report.
These and many other programs offer insights about the benefits
and cautions that should be taken into account if family involvement
is to succeed. Not all families are equally able to benefit, and not all
family interaction is conducive to healthier outcomes. Experience
from the existing programs suggests that patients/families who want
to engage in care support are most likely to benefit from it, and that
the quality of the pre-existing relationships is an important factor in
success. Experience also illuminates some of the realities of family
involvement in chronic illness care:
Do self-management tasks for patient Facilitate, accommodate, remind, and motivate patient
in doing self-management tasks
Be the proxy decisionmaker and problem-solver if patient is Partner in decisionmaking and problem-solving
unable to participate
Connect patient with outside resources Help patient find and connect to outside resources
Emotionally support patient, with higher likelihood of needing Support patient in handling emotional stress of illness
outside help in dealing with emotional stress of caring for patient and its care
Help patient adapt to new life roles Help integrate illness care into existing life roles and
support continued involvement in shared social networks
*Family roles usually fall on a continuum between these two approaches, sometimes combining elements of each. For example, one person may want little help managing medical
appointments but may ask a family member to directly administer their insulin injections.
specific goals are: I will buy low-salt crackers instead of around the house where my mom will be
tempted to eat them. (creation of a healthier environment)
of saltines the next time I do the family grocery
My dad wants to change his cooking style, so I
shopping; or I will ask my sister if she wants to go
will buy him a low-salt cookbook to give him the
for a walk with me in the evening two times each information he needs. (facilitation)
week. (See sidebar for more examples of family I will go with my sister to the first meeting of her
goals.) self-management class, since I know she is nervous
Family members can be guided through the about it, and Ill offer to take notes for her.
(doing illness management together, being a second set of ears)
goal-setting process using the same techniques
The next time my brother seems stressed and
health professionals use with patients, including
discouraged about keeping his COPD under control,
encouraging realistic goals, assessing family members Ill encourage him to talk about it, and listen without
readiness to change, and discussing barriers to judgment. (emotional support)
reaching the goal. In some programs, family members The next time my partner seems confused about
are given a specific goal by the program leader that how to take his medicine, Ill suggest that he
write down his question and bring it to his doctors
complements the patients current goals or the topic
appointment. (support for patient-provider relationship)
of the program session. In other programs, the
The next time my aunt tells me her sugars are
patient and family member decide together what getting higher, Ill offer to look over the numbers
the family members goal should be; or the patient with her to see if we notice any patterns she can
sets a self-management goal, and the family member discuss with the nutritionist. (help with problem-solving, support
for patient-provider relationship)
subsequently chooses a goal that will support that
I will bring low-fat chips when I watch the game
patient goal. Yet another model would be for family
with my uncle and his friends, and help him think
members to set goals to improve their own health of something witty to say if they tease him about
(such as through healthier eating and more physical eating healthier. (help with social pressure, planning ahead for difficult
activity), with the intention of creating a healthier situations)
home atmosphere which would in turn indirectly I will watch the kids for the afternoon so my friend
can finally get that test her doctor recommended.
support and influence the patient.
(help with competing obligations)
It is particularly important for patients and
Ill ask our group if theyd mind going to a hotel
families to discuss how they will handle situations instead of a cabin for our vacation, so our friend with
that require another persons help. For example, arthritis can still feel like a part of the gang.
(support for continuing social roles)
family often play a key and necessary role in helping
patients who are confused from low blood sugar
or dizzy from a heart arrhythmia. Because these
situations can be stressful, embarrassing, and even
Showing empathy for patients point of view I know its hard during the holidays to be around all that food that isnt
recommended on your diet.
Showing concern You seem really short of breath today. I am concerned about you.
Offering choices and alternatives to patient Should we walk this morning or this afternoon?
Do you want to help plan our menu for the week?
Providing rationale for advice given I remember the doctor explaining that more weight gain in a short time means
you are getting more fluid than your heart can handle. I think we should call
the doctors office since they may tell you to take an extra water pill.
Openly discussing illness and directly This is the second time that you have run out of your important medication.
addressing conflicts about illness care We need to figure out a plan so this doesnt happen again. I have some
suggestions but first Id like to hear any ideas you have about how we can
better plan ahead.
Asking about the patients experience of the What does taking your insulin shot feel like? Now that youve been taking it
illness and developing accurate perceptions for a month, does it still make you anxious?
of the patients feelings and abilities
Focusing positively on successes Two months ago you could only walk down the street and back. Now you can
go around the block.
Continuing to plan pleasant activities together Its tough for us to go walking in the woods like we used to. Why dont we go
as a family for a scenic drive this weekend instead?
Criticizing I dont know why you stopped exercising last week. I dont understand you.
Using guilt You should be gratefulI worked hard to make this food fit within your diet.
Dont you want to live for a long time?
Being overprotective of patient I dont think you should go on that church tripwhat if your sugar drops
when youre on the bus?
Taking responsibility for patient behaviors I cant believe I let your cholesterol get that high; I should have watched your
or outcomes diet more carefully.
Ignoring or downplaying patient symptoms Lets not talk about your pain again today, Im sure its not really that bad
Note: Examples adapted with permission from Patricia Clark and Sandra Dunbar, Family Partnership Intervention: A Guide for a Family Approach to Care of Patients With Heart Failure. 49
Communicating effectively with health professionals Supportive and unsupportive communication techniques for spouses
and supporters
Managing fatigue Effective strategies for requesting and providing spouse assistance
(i.e., being clear about needs, being sensitive to amount of help needed)
Managing anger, stress, and frustration Techniques to limit spillover of negative emotions from one partner to
the other
Exercise, eating, and healthy sleep patterns Spouse strategies for supporting patient health goals
These examples adapted with permission from CES-related publications and personal communication with Lynn Martire, Ph.D.58,59
Encouraged to
call to discuss
Option to
survey responses.
record
phone message
Table 4. Examples of Patient Responses to Automated Phone Assessment and Suggested CarePartner Actions
Pati e nt respons e S u g g est ed Car ePartn er acti o n s
Do not have enough medication to last 2 weeks Recommend that patient call pharmacy right away for a refill
Drinking more than 2 liters of fluid a day Remind patient why it is important to limit fluids
More body swelling than last week Remind patient to use support stockings if prescribed
Weight increased more than 3 pounds in last week Recommend patient call their health care provider within 48 hours
Will the program be integrated into other self-management support programs or stand alone?
Patients and family members participating together, with couples participating in groups, or one couple at a time.
Assignment of homework.
Do health care providers need training to help them communicate more effectively with involved family members?
How can practice environments be made more welcoming to involved family members?
Illness-related stress
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