G. Warner, S. Hutchinson, R. Genoe and N. Geddes,.

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G. Warner, S. Hutchinson, R. Genoe and N. Geddes,

Self-Management Interventions Targeted at Caregivers of Older Adults:

Preliminary Results from a Scoping Review

Special thanks to…. Robin Parker from Kellogg Library for assistance in conducting the database searchesFunded by…Nova Scotia Health Research Foundation through a REDI team development grant

Acknowledgements

What is known from the existing literature about the delivery and effectiveness of self-management interventions for family caregivers of older adults?

Our research question

What self-management components were included in the identified programs?

What did these programs look like? (e.g. participants, duration, group versus individual)

How effective were the programs?

What types of self-management programs are feasible?

Sub-Questions

Self-management programs teach individuals not only to medically manage their condition, but also to manage the psychological, social and lifestyle dimensions associated with living with the condition. (Barlow, 2002)

What is self-management for unpaid caregivers who care for a spouse/parent or friend with a debilitating condition.

Background

Where is the unpaid

caregiver?

1. Action planning, goal setting & follow-up

2. Caregiver self care & stress reduction3. Decision support tools4. Group education, coaching session5. Individual education, coaching

session6. Information via computer or 7. telephone or 8. video/audio or 9.

written10. Peer group support11. Problem solving

Self Management Components

deSilva (2011)

Must be an interventionMust include family

caregivers, either alone or as a caregiver /care receiver dyad

Participant caring for someone with an ongoing condition (or limitations due to aging)

Intervention described as a self-management/self-care/patient education /empowerment program

Inclusion criteria

Study published prior to the year 2000

Intervention only delivered psychotherapy or exercise

Delivered primarily as inpatient/resident program

Care recipients ≤55

Exclusion criteria

Databases Searched: Central, Cinahl, Medline, Embase, Cochrane from 2000 to 2012

Located 2227 sources2 stages: Two individuals

reviewed 1) abstracts then 2) full manuscripts

Conflicts discussed and consensus decision

Extracted information using NVivo and Excel

32 studies met inclusion criteria

Methods

Number of Abstracts reviewed =2227 Included/Reviewed= 130 Excluded= 2097

Included after manuscript review= 42After cross referencing by study = 32

Excluded after manuscript review= 88 Reasons: Study Design= 31 Participants= 31 Intervention= 21 Language= 5

Reasons for Exclusion

Of the 32 studies examined: Study Design:

RCTs = 18

Participants: Caregiver only = 17Dyads = 15

Delivery format: Individual/dyad = 17Group = 9Combination = 6

Findings-Description of

studies

29 out of the 32 interventions were disease specificConditions: Alz Dis/Dementia = 17Stroke = 5Osteoarthritis = 2 Heart failure=2Cancer = 2Parkinson’s Disease=1

Findings-Description of

studies

1. Won Won, 2008:Powerful tools for caregiving (PTC)

2. Ducharme, 2011:Learning to be a caregiver

3. van den Heuvel ,2000: Group and individual support program for caregivers of stroke patients

4. Johnston, 2007: Workbook intervention for stroke patients and carers

5. Gitlin, 2010: Advancing Caregiver Training (ACT)

6. Glueckauf, 2007: Telephone-based cognitive-behavioral intervention

Examples of studies

Self-management programs are most commonly provided to only the caregiver who is caring for someone with dementia

There are some care partner/dyad interventions for persons with stroke or chronic heart failure that look interesting

The sample size for some of the studies was too small to see if the intervention is effective, many were pilots of planned RCTs

Findings-Description of

studies

All 32 interventions had an education/ coaching component

Other components included were:• Information delivered (written,

telephone, computer or video) = 28• Addressed caregiver self-care or

stress reduction = 28• Involved problem solving = 25• Had action planning or goal setting

with follow-up = 18• Included a peer group support = 9

Findings –Self-

management components

Not possible to conduct a meta-analysis because of clinical heterogeneity: Diverse conditions 161 outcome measures

used, of these 42 were developed for the study

only ~50% had an RCT design

Findings – Effectiveness

1) Grouped individual outcome measures by general categories, three most prevalent categories werePsycho-social Self-carePhysical health/fitness

2) Ranked results by: Statistically significant

difference Positive results but not

statically significant No effect

Findings – Effectiveness

The number of studies with statistically results was not substantially difference by : Delivery method – (in-person,

telephone, computer) Format – (group, individual, both) Location – (home, community) Duration of intervention – (< 6

weeks, 6-11 weeks, 12-20 weeks, >21 weeks)

Number of sessions – (< 5, 6 -10, 11-20, > 20)

Number of self management components (range 3 – 10)

Findings – Effectiveness

• Pros:• If in home, convenient for caregivers • Better for communication

• Cons:• Time consuming for staff • High cost to provider• If in community not convenient for

caregivers

In-person = 9

• Pros:• Less disruption to care duties• Low cost to caregivers and providers• Easy to organise and participate in • Can reach rural populations

• Cons:• Can hinder communication• Requires equipment and a

connection

Telephone = 6Computer = 3

• Pros:• More flexible for individually tailoring

the intervention• Allows participants opportunity to

meet facilitator but convenience of telephone access

• Cost effective • Cons:

• None reported

In-person + telephone = 13

Findings –Feasibility

Self management programs had two common objectives; teach caregivers self-care or self-management

principles and; provide information or education tailored to

caregiver concerns, usually related to the care recipients health condition

Self-management programs are diverse –conditions, change they hope to effect in the participant, sometimes in conjunction with exercise, outcomes

What is feasible? one-to-one in person can be high resources outside the home may be hard for caregivers to

access Telephone is cost efficient but may not be

acceptable for caregivers Combo of phone/in person may work the best

Conclusions