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RRP 07-285 – QUERI Project

RRP 07-285
Can Family Caregiver Involvement Improve TIDES Outcomes
Lisa B. Dixon, MD MPH
Baltimore VA Medical Center VA Maryland Health Care System, Baltimore, MD
Baltimore, MD
Funding Period: August 2007 - February 2008
Studies on the models of coordinating depression treatment within the primary care setting demonstrate that it can significantly improve quality of care and improve outcomes, but few patients receive guideline-concordant care, and many remain significantly depressed after a year with the program. The objective of this new research program is to produce a feasible and testable model of family intervention/social support that can be used to improve the effectiveness of one variant of this model within VA-TIDES-- in promoting recovery and reducing relapse in major depression. The rationale for developing a family intervention is based on several observations. Family interventions have been found to reduce relapse and improve adherence in the treatment of other psychiatric disorders. Family interventions have been found to be useful in the treatment of other chronic non-psychiatric disorders. Finally, previous research on TIDES-type programs shows that limited social support is a strong predictor of continued depression.

In this two site Baltimore and West LA VA) developmental project we will conduct the preliminary phase of this effort, with our immediate outcome being the development of a pilot intervention which will then form the basis for a randomized control trial.

In this project, we will complete the following: 1. Conduct an in-depth literature review of family/social support interventions; 2. Review current VA and HIPPA regulations regarding patient privacy/confidentiality: 3. Conduct semi-structured qualitative interviews of 12-1 5 Depression Nurse Care Managers (DNCM) who have been providing care to in TIDES. The interview will focus on the perceptions regarding how families or social support networks promote or inhibit the appropriate utilization of depression services and treatment by the patient. We will also focus on what the TIDES model and DNCM's could do to enhance the likelihood that such family support could promote depression care; 4. Conduct semi-structured interviews of 5-10 primary care physicians participating in TIDES, and 5. Conduct semi-structured interviews of persons from consumer and family groups such as the National Alliance on Mental Illness to obtain such consumer perspectives on how to engage families within a model such as TIDES in primary care.

After these activities are completed, the project steering committee (SC) which includes expertise in family interventions and depression treatment in primary care, will meet in person to synthesize the data and draft a TIDES caregiver intervention model. This model will then be reviewed by a subset of the original stakeholders who were interviewed and by two in person expert panels--one in Baltimore and one in Los Angeles. These panels will provide feedback regarding the model. The final step of the application will be a second in-person meeting of the project SC at which all of the model feedback will be synthesized and the model revised. We expect at this point to have a model of a TIDES Family Support Program ready for pilot testing.

General Summary of DCM interviews

1.When you are conducting an initial or follow-up assessment of veterans referred to you for depression care management, how often do veterans mention their families?

-For veterans who have family contacts, they mostly mentioned their significant others. For older single veterans, they may mention their children in the care giving context.
-Siblings are rarely mentioned.
-In rare occasions, veterans would discuss family conflicts, particularly when they were in distress. But during initial contact, vets may be reluctant to discuss family or marital issues.

2.Have you had any interactions with veterans' families or support persons?

-Family contact happened more often at VA sites where DCMs had the opportunity to meet the patients face to face due to their physical proximity to primary care services or due to the way referrals were handled at the site.
-Direct contact with families or support person is rare roughly 15 to 20%.
-Direct family contact, both by phone and in-person, generally occured with the patients were present in the room or on the other line.
-Most family involvement includes helping families understand symptoms of depression through discussion and/or mailed pamphlets.
-When family issues are disclosed, DCMs generally try to make a referral for counseling.

3.In your experience, were there certain kinds of patient situations or certain patient characteristics where you felt that the involvement of families would help?

-Elder vets with medical problems who need family support.
-Loner type who should be encouraged to socialize.
-Vets who have difficulty hearing or have cognitive dysfunction.
-Younger vets with substance use problems.
-Vets with family conflicts or misunderstanding-marital or sibling.
-Generational cultural differences-older vets could not easily share or articulate their emotional distress to families or to children.
-Vets who felt embarrassed by their problems. Medical problems often limit their physical and cognitive abilities, and therefore they experienced further guilt and loss.
-Comorbidity-ex: PTSD but refuse mental health care

Educate the families about the symptoms of depressions. Family members could
-help activate the patients to improve functioning;
-learn to understand that patients may behave negatively due to symptoms;
-try to understand the benefits of medications and to support treatment adherence;
-encourage patient to stay with the course of treatment even if the patients feel better quickly; and
-spend more time with patients

4.What kinds of difficulties would you anticipate if you included family members of TIDES participants as part of your care management?

-Confidentiality -even when permission is given in the beginning, it does not necessarily apply to every situation thereafter.
-Careful not to be pulled in by the conflicts and personality disorder
-May compromised trust and rapport with patients. Though seeking collaborated information may seem innocuous, patients may feel that he/she is not trusted by DCM.
-The service is designed for the Vets, "it is their time." Family involvement could take away from that.

5.What are your thoughts about how best to engage families?

-Getting family members involve through the use and discussion of psycho-educational materials.
-Encourage veterans to involve their caregivers or support persons if they are available.
-TIDES does not use standardized psycho-educational materials across sites.
-No standardized family-oriented psycho-educational materials.

6.Have you encountered or do you foresee any problems we should be aware of in applying HIPAA regulations and VA confidentially rules to family involvement in depression care management?

-Strong awareness about HIPAA regulations
-Verbal consents are noted on CPRS. Signed consent is not always obtainable.
-Some DCMs mailed consent for patient to sign and return.
-DCMs will not disclose information about the patients with anyone without consent. Caregivers, however, may provide information or voice their concerns about the patients to DCMs, as long as it is made clear that DCMs could not discuss the case.

Nursing experience among the interviewees, average 20 to 25 years. 75% of our interviewees have certified mental health background.

Summary from family/consumer interviews

***Common themes elicited from interviews to consider in intervention development.

1-Families need education about the prevalence, causes, symptoms (including behavioral manifestations of the illness), and treatments for depression. Families also need education about the importance of medication adherence and ways in which they can support recovery
2-Community referral sources (i.e., NAMI)
3-Families need communication training (emphasizing the importance of non-judgmental language, lowered expectations, etc.)
4-Early family involvement is crucial-important to identify barriers to early family involvement (i.e., communication with treatment providers) and problem solve how to overcome them-perhaps more provider-initiated inclusion of family in tx both to provide info to the treatment team and to provide emotional and tangible support for the patient and participate in shared decision-making
5-In order to successfully facilitate family involvement, doctors need further training in how to communicate with families and how to identify circumstances in which families will be helpful and those in which the family will not be help

Literature Review suggested that there is no extant model for us to use, but that brief approaches that promote education and adherence would be most useful.

We cannot claim impact at ths point, as the model that we have developed needs to be tested. We hope to do this in a next round of research.

External Links for this Project

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None at this time.

DRA: Mental, Cognitive and Behavioral Disorders
DRE: Treatment - Observational
Keywords: Caregivers – not professionals, Depression
MeSH Terms: none

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