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Review Article
Effects of Family Support Programs for Caregivers of People with Dementia - Caregiving Burden, Depression, and Stress: Systematic Review and Meta-analysis
Seyeon Park, Myonghwa Park
Journal of Korean Academy of Nursing 2015;45(5):627-640.
DOI: https://doi.org/10.4040/jkan.2015.45.5.627
Published online: October 15, 2015

College of Nursing, Chungnam National University, Daejeon, Korea

College of Nursing, Chungnam National University, Daejeon, Korea

Address reprint requests to : Park, Myonghwa College of Nursing, Chungnam National University, 55 Munhwa-ro, Jung-gu, Daejeon 35015, Korea Tel: +82-42-580-8328 Fax: +82-42-580-8309 E-mail: mhpark@cnu.ac.kr
• Received: April 14, 2015   • Revised: April 28, 2015   • Accepted: July 4, 2015

Copyright © 2015 Korean Society of Nursing Science

This is an Open Access article distributed under the terms of the Creative Commons Attribution NoDerivs License. (http://creativecommons.org/licenses/by-nd/4.0) If the original work is properly cited and retained without any modification or reproduction, it can be used and re-distributed in any format and medium.

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  • Purpose
    The objective of this systematic review was to assess the effects of family support programs on caregiving burden, depression, and stress in family caregivers of people with dementia.
  • Methods
    A literature search was conducted of electronic databases to identify randomized controlled studies with family support programs done between 2000 and 2014. Studies published in English and/or Korean were included for the analysis with search strategies adapted from the Cochrane Dementia and Cognitive Improvement Group. Studies were rated for quality assessment by two independent reviewers using the appraisal checklist developed by Cochrane Reviews and Dissemination. Of 8,334 articles identified in the literature search, full texts of 76 articles that met the inclusion criteria were reviewed and 38 were found to include relevant outcomes.
  • Results
    Results from selected studies were pooled in statistical meta-analysis using Review Manager Software and heterogeneity between combined studies was assessed using the Chi-square test. Meta-analysis showed that the effect sizes of family caregiver support programs were small to medium for categories of caregiving burden (Hedge's g= - 0.17, 95% CI= - 0.30~ - 0.04), depression (Hedge's g= - 0.30, 95% CI= - 0.40~ - 0.20), and stress (Hedge's g= - 0.39, 95% CI= - 0.52~ - 0.25).
  • Conclusion
    The review results indicate that a support programs can assist family care-givers in reducing their psycho-emotional distress.
Figure 1.
Flow of studies included from database search.
jkan-45-627f1.jpg
Figure 2.
Graph for risk of bias.
jkan-45-627f2.jpg
Figure 3.
Forest plot of effect size by support program for family caregivers of people with dementia.
jkan-45-627f3.jpg
Table 1.
Descriptive Summary of Included Studies
No. Study Country Intervention
Outcome
Type Format Length (min) Session Duration (wks) Size of group
1 Marriott et al. (2000) UK Psycho-education Off-line 90 14 28 Unclear Mental health, depression
2 Quayhagen et al. (2000) USA Multicomponent Off-line 90 8 8 Unclear Depression, anxiety, stress, coping, support
3 Done et al. (2001) UK Education Off-line 60 12 6 Unclear Stress
4 Hepburn et al. (2001) USA Psycho-education Off-line 60 7 7 4~7 Nurturing, monitoring response to behavior, depression, burden
5 Bourgeois et al. (2002) USA Multicomponent Off-line 240 12 12 Unclear Negative affect (anger, anxiety) self efficacy, stress,depression
6 Fung et al. (2002) Hong Kong Self-help group Off-line 60 12 12 8~9 Stress, quality of life
7 Burns et al. (2003) USA Multicomponent Off-line 30~60 8 24 Unclear Well-being, depression, caregivers’ reaction
8 Hebert et al. (2003) Canada Psycho-education Off-line 60 16 16 15 Reaction, burden, anxiety, distress
9 Mahoney et al. (2003) USA Education Telephone 20 8 24 15 Depression, anxiety
10 Mittelman et al. (2004) USA Multicomponent Off-line Unclear 6 16 Unclear Depression
11 Senanarong et al. (2004) Thailand Counseling Off-line 45 4 24 25 Stress
12 Hepburn et al. (2005) USA Psycho-education Off-line 120 6 6 Unclear Distress, competence, relational deprivation, role captivity, burden, caregiving beliefs and attitudes
13 Martin-Cook et al. (2005) USA Education Off-line Unclear 4 4 Unclear Sense of loss, powerlessness, self-efficacy, depression
14 Roth et al. (2005) USA Counseling Off-line Unclear 16 16 Unclear Social support, stress, behavior problems, depression
15 Teri et al. (2005) USA Multicomponent Off-line 120 8 16 Unclear Depression, sleep quality, reaction, burden
16 Gonyea et al. (2006) USA Multicomponent Off-line 90 5 5 5~10 Distress, burden
17 Winter et al. (2006) USA Self-help group Telephone 30 24 24 5 Depression, burden, gain
18 Finkel et al. (2007) USA Multicomponent Telephone 15 12 24 6 Depression, burden, caregivers’ health care behaviors, social support
19 Hepburn et al. (2007) USA Psycho-education CD-ROM 120 6 6 3~10 Relational deprivation, role captivity, competence, mastery, loss of self, distress
20 Marqz-Gonzalez et al. (2007) Spain Education Off-line 180 8 8 8 Depression, problem behaviors
21 Charlesworth et al. (2008) UK Counseling Off-line Unclear 8 8 Unclear Depression, anxiety, quality of life, positive affect,perceived support
22 Dias et al. (2008) India Multicomponent Off-line 120 4 12 Unclear Mental health, burden, distress
23 Moniz-Cook et al. (2008) UK Multicomponent Off-line 45 24 24 Unclear Anxiety, depression
24 Tremont et al. (2008) USA Multicomponent Telephone 15~30 6 6 7 Burden, depression
25 Oh (2008) Korea Multicomponent Off-line 60 8 4 Unclear Quality of life, burden
26 Connell et al. (2009) USA Counseling Telephone 30 14 24 Unclear Self-efficacy, burden, depression, stress
27 Gavrilova et al. (2009) Russia Education Off-line 30 5 5 Unclear Burden, mental health, physical & psychological response, social reaction
28 Au et al. (2010) Hong Kong Psycho-education Off-line 120 13 13 5~8 Depression, self-efficacy, coping questionnaire
29 Gallagher-Thompson et al. (2010) USA Psycho-education Online-DVD 120 10 10 7~9 Depression, positive affect
30 Chien et al. (2011) Hong Kong Multicomponent Off-line 40 6 24 Unclear Burden, quality of life, aatisfaction with social support
31 Davis et al. (2011) USA Multicomponent Off-line 35~45 10 12 Unclear Caregiver guilt, depression
32 Rotrou et al. (2011) France Psycho-education Off-line 120 12 12 6~10 Depression, burden, carers’ sense of competence
33 Wang et al. (2011) Hong Kong Self-help group Off-line 120 12 24 8 Burden, quality of life, social support
34 Joling et al. (2012) Nether lands Psycho-education Off-line Unclear 2 12 6 Depression, anxiety
35 Wang et al. (2012) China Self-help group Off-line 90 12 24 Unclear Distress, quality of life, family support
36 Hirano et al. (2011) Japan Counseling Off-line Unclear 3 12 Unclear Burden, physical activity, pain, quality of sleep
37 Kwok et al. (2013) Hong Kong Psycho-education Telephone 30 12 12 Unclear Burden, self-efficacy
38 Whitebird et al. (2013) USA Multicomponent Off-line 15 8 8 Unclear Stress, depression, anxiety, mental health, physical health, burden, social support
Table 2.
Characteristics of Included Studies
Characteristics Categories n (%)
Year 2000~2004 11 (28.9)
2005~2009 16 (42.2)
2010~2014 11 (28.9)
Country Korea 1 (2.6)
Other countries 37 (97.4)
Outcome Burden 18 (32.7)
Depression 23 (41.8)
Stress 14 (25.5)
Measurement Burden
 Family caregiving 2 (11.8)
 Gilleard burden scale 1 (5.9)
 ZBI 12 (70.5)
 Screen for caregiver burden 1 (5.9)
 MBCBS 1 (5.9)
Depression
 BDI 1 (4.3)
 Brief symptom inventory 2 (8.7)
 CES-D 12 (52.2)
 GDS 5 (21.7)
 HADS 2 (8.8)
 MADRS 1 (4.3)
Stress
 PSS 2 (14.3)
 NPI 6 (42.9)
 RMBPC 3 (21.5)
 Psychiatric symptoms index 1 (7.1)
 Relative stress scale 1 (7.1)
 Unknown 1 (7.1)
Support program type Psychoeducation 10 (26.3)
Education 5 (13.1)
Counseling 5 (13.1)
Self-help group 4 (10.5)
Multicomponent 14 (37.0)
Support program Off-line 30 (78.9)
method Telephone 6 (15.9)
Online 1 (2.6)
CD-ROM 1 (2.6)
Patient participation Include 7 (18.4)
Exclude 31 (81.6)
Duration (wks) 1~4 2 (5.3)
5~8 11 (28.9)
9~12 9 (23.7)
13~16 6 (15.8)
≥17 10 (26.3)
Number of session 1~4 5 (13.2)
5~8 15 (39.5)
9~12 9 (23.7)
≥13 9 (23.7)

RMBPC=Revised memory and behavior problem checklist; ZBI=Zarit burden interview; BDI=Beck depression inventory; MBCBS=Montgomery borgatta caregiver burden scale; CES-D=Center for epidemiological studies-depression scale; GDS=Geriatric depression scale; HADS=Hospital anxiety and depression scale; MADRS=Montgomery-Asberg depression rating scale; PSS=Perceived stress scale; NPI=Neuropsychiatric inventory; MBPC=Memory and behavior problem checklist.

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    Effects of Family Support Programs for Caregivers of People with Dementia - Caregiving Burden, Depression, and Stress: Systematic Review and Meta-analysis
    Image Image Image
    Figure 1. Flow of studies included from database search.
    Figure 2. Graph for risk of bias.
    Figure 3. Forest plot of effect size by support program for family caregivers of people with dementia.
    Effects of Family Support Programs for Caregivers of People with Dementia - Caregiving Burden, Depression, and Stress: Systematic Review and Meta-analysis
    No. Study Country Intervention
    Outcome
    Type Format Length (min) Session Duration (wks) Size of group
    1 Marriott et al. (2000) UK Psycho-education Off-line 90 14 28 Unclear Mental health, depression
    2 Quayhagen et al. (2000) USA Multicomponent Off-line 90 8 8 Unclear Depression, anxiety, stress, coping, support
    3 Done et al. (2001) UK Education Off-line 60 12 6 Unclear Stress
    4 Hepburn et al. (2001) USA Psycho-education Off-line 60 7 7 4~7 Nurturing, monitoring response to behavior, depression, burden
    5 Bourgeois et al. (2002) USA Multicomponent Off-line 240 12 12 Unclear Negative affect (anger, anxiety) self efficacy, stress,depression
    6 Fung et al. (2002) Hong Kong Self-help group Off-line 60 12 12 8~9 Stress, quality of life
    7 Burns et al. (2003) USA Multicomponent Off-line 30~60 8 24 Unclear Well-being, depression, caregivers’ reaction
    8 Hebert et al. (2003) Canada Psycho-education Off-line 60 16 16 15 Reaction, burden, anxiety, distress
    9 Mahoney et al. (2003) USA Education Telephone 20 8 24 15 Depression, anxiety
    10 Mittelman et al. (2004) USA Multicomponent Off-line Unclear 6 16 Unclear Depression
    11 Senanarong et al. (2004) Thailand Counseling Off-line 45 4 24 25 Stress
    12 Hepburn et al. (2005) USA Psycho-education Off-line 120 6 6 Unclear Distress, competence, relational deprivation, role captivity, burden, caregiving beliefs and attitudes
    13 Martin-Cook et al. (2005) USA Education Off-line Unclear 4 4 Unclear Sense of loss, powerlessness, self-efficacy, depression
    14 Roth et al. (2005) USA Counseling Off-line Unclear 16 16 Unclear Social support, stress, behavior problems, depression
    15 Teri et al. (2005) USA Multicomponent Off-line 120 8 16 Unclear Depression, sleep quality, reaction, burden
    16 Gonyea et al. (2006) USA Multicomponent Off-line 90 5 5 5~10 Distress, burden
    17 Winter et al. (2006) USA Self-help group Telephone 30 24 24 5 Depression, burden, gain
    18 Finkel et al. (2007) USA Multicomponent Telephone 15 12 24 6 Depression, burden, caregivers’ health care behaviors, social support
    19 Hepburn et al. (2007) USA Psycho-education CD-ROM 120 6 6 3~10 Relational deprivation, role captivity, competence, mastery, loss of self, distress
    20 Marqz-Gonzalez et al. (2007) Spain Education Off-line 180 8 8 8 Depression, problem behaviors
    21 Charlesworth et al. (2008) UK Counseling Off-line Unclear 8 8 Unclear Depression, anxiety, quality of life, positive affect,perceived support
    22 Dias et al. (2008) India Multicomponent Off-line 120 4 12 Unclear Mental health, burden, distress
    23 Moniz-Cook et al. (2008) UK Multicomponent Off-line 45 24 24 Unclear Anxiety, depression
    24 Tremont et al. (2008) USA Multicomponent Telephone 15~30 6 6 7 Burden, depression
    25 Oh (2008) Korea Multicomponent Off-line 60 8 4 Unclear Quality of life, burden
    26 Connell et al. (2009) USA Counseling Telephone 30 14 24 Unclear Self-efficacy, burden, depression, stress
    27 Gavrilova et al. (2009) Russia Education Off-line 30 5 5 Unclear Burden, mental health, physical & psychological response, social reaction
    28 Au et al. (2010) Hong Kong Psycho-education Off-line 120 13 13 5~8 Depression, self-efficacy, coping questionnaire
    29 Gallagher-Thompson et al. (2010) USA Psycho-education Online-DVD 120 10 10 7~9 Depression, positive affect
    30 Chien et al. (2011) Hong Kong Multicomponent Off-line 40 6 24 Unclear Burden, quality of life, aatisfaction with social support
    31 Davis et al. (2011) USA Multicomponent Off-line 35~45 10 12 Unclear Caregiver guilt, depression
    32 Rotrou et al. (2011) France Psycho-education Off-line 120 12 12 6~10 Depression, burden, carers’ sense of competence
    33 Wang et al. (2011) Hong Kong Self-help group Off-line 120 12 24 8 Burden, quality of life, social support
    34 Joling et al. (2012) Nether lands Psycho-education Off-line Unclear 2 12 6 Depression, anxiety
    35 Wang et al. (2012) China Self-help group Off-line 90 12 24 Unclear Distress, quality of life, family support
    36 Hirano et al. (2011) Japan Counseling Off-line Unclear 3 12 Unclear Burden, physical activity, pain, quality of sleep
    37 Kwok et al. (2013) Hong Kong Psycho-education Telephone 30 12 12 Unclear Burden, self-efficacy
    38 Whitebird et al. (2013) USA Multicomponent Off-line 15 8 8 Unclear Stress, depression, anxiety, mental health, physical health, burden, social support
    Characteristics Categories n (%)
    Year 2000~2004 11 (28.9)
    2005~2009 16 (42.2)
    2010~2014 11 (28.9)
    Country Korea 1 (2.6)
    Other countries 37 (97.4)
    Outcome Burden 18 (32.7)
    Depression 23 (41.8)
    Stress 14 (25.5)
    Measurement Burden
     Family caregiving 2 (11.8)
     Gilleard burden scale 1 (5.9)
     ZBI 12 (70.5)
     Screen for caregiver burden 1 (5.9)
     MBCBS 1 (5.9)
    Depression
     BDI 1 (4.3)
     Brief symptom inventory 2 (8.7)
     CES-D 12 (52.2)
     GDS 5 (21.7)
     HADS 2 (8.8)
     MADRS 1 (4.3)
    Stress
     PSS 2 (14.3)
     NPI 6 (42.9)
     RMBPC 3 (21.5)
     Psychiatric symptoms index 1 (7.1)
     Relative stress scale 1 (7.1)
     Unknown 1 (7.1)
    Support program type Psychoeducation 10 (26.3)
    Education 5 (13.1)
    Counseling 5 (13.1)
    Self-help group 4 (10.5)
    Multicomponent 14 (37.0)
    Support program Off-line 30 (78.9)
    method Telephone 6 (15.9)
    Online 1 (2.6)
    CD-ROM 1 (2.6)
    Patient participation Include 7 (18.4)
    Exclude 31 (81.6)
    Duration (wks) 1~4 2 (5.3)
    5~8 11 (28.9)
    9~12 9 (23.7)
    13~16 6 (15.8)
    ≥17 10 (26.3)
    Number of session 1~4 5 (13.2)
    5~8 15 (39.5)
    9~12 9 (23.7)
    ≥13 9 (23.7)
    Table 1. Descriptive Summary of Included Studies

    Table 2. Characteristics of Included Studies

    RMBPC=Revised memory and behavior problem checklist; ZBI=Zarit burden interview; BDI=Beck depression inventory; MBCBS=Montgomery borgatta caregiver burden scale; CES-D=Center for epidemiological studies-depression scale; GDS=Geriatric depression scale; HADS=Hospital anxiety and depression scale; MADRS=Montgomery-Asberg depression rating scale; PSS=Perceived stress scale; NPI=Neuropsychiatric inventory; MBPC=Memory and behavior problem checklist.


    J Korean Acad Nurs : Journal of Korean Academy of Nursing
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