Caring About Care Caring About Care Recipients in Family Recipients in Family Caregiving Research Caregiving Research

and Practice and Practice

Gregory C. SmithGregory C. Smith

College of Education, Health, & College of Education, Health, & Human ServicesHuman Services

Kent State UniversityKent State University

““Stress, Coping, & Well-Being of Custodial Grandparents”Stress, Coping, & Well-Being of Custodial Grandparents”

Funded by: Funded by: National Institute of Mental Health [R01MH66851-02] G. C. Smith, Principal Investigator

“Online Intervention to Improve Stroke Care from Spouses”

Funded by: National Institute of Nursing Research [R21NR010189-01A1]

G. C. Smith, Principal InvestigatorG. C. Smith, Principal Investigator M. Dellman-Jenkins, Co-Investigator M. Dellman-Jenkins, Co-Investigator N. Egbert, Co-Investigator K. Nanna, Project Director

►““There has been surprisingly little There has been surprisingly little research on effects of care-receiving, research on effects of care-receiving, in spite of the fact that every in spite of the fact that every caregiving situation involves a caregiving situation involves a recipient. The assumption has been recipient. The assumption has been that care recipients are, by that care recipients are, by definition, being benefited with little definition, being benefited with little of no costs… In fact, in most of no costs… In fact, in most research the recipient is literally research the recipient is literally invisible.”invisible.”

Blank, Levesque, & Winter (1993). In Planning and Control Processes across the life Span. Edited by Margie E. Lachman

Aspects of CaringAspects of Caring

►““Duty of Duty of Caring”Caring”

► Involves Legal Involves Legal Connotations & Connotations & Social Norms Social Norms --

““Caring Caring For”For”

Implies Need for Implies Need for Tasks toTasks to be Attended tobe Attended to

““Caring About”Caring About” Involves concern for the Involves concern for the self-image and psychological self-image and psychological well-beingwell-being of the CR.of the CR.

Family Caregiving in Custodial Family Caregiving in Custodial Grandparent FamiliesGrandparent Families

Key Research Questions:

1. How do custodial grandchildren fare in terms of their psychological well-being in comparison to the general population?

2. Do family contextual factors and grandparents’ own psychological difficulties contribute to the adjustment problems of custodial grandchildren?

Participants

733 grandmothers from 48 states who were providing full time care to grandchildren (ages 4-17) for at least 3 months in total absence of the child’s biological parents

By Study Design:

African American - (N = 366 )

White - (N = 367)

RESEARCH QUESTION 1:

How do custodial grandchildren fare in terms of their psychological well-being in comparison to thegeneral population?

- We compared our sample to normative data gathered by the National Health Interview Survey (N = 9,878).

- In both samples, parental informants were interviewed using the Strengths and Difficulties Questionnaire (SDQ).

Table 2. Comparisons of SDQ scores for custodial grandchildren to those for children from the 2001 NHIS normative sample. ____________________________________________________________________________________________________________ ______________

All ______________________________________________________

Boys ______________________________________________________

Girls ______________________________________________________

Normative (N=9878)

_________

Custodial (N=733)

__________

Standardized Effect Size (ES)

_________________

Normative (N=5080)

_________

Custodial (N=342)

__________

Standardized Effect Size (ES)

_________________

Normative (N=4798)

_________

Custodial (N=391)

__________

Standardized Effect Size (ES)

_________________

M

SD

M

SD

t df

ES

95% CI

M

SD

M

SD

t df

ES

95% CI

M

SD

M

SD

t df

ES

95% CI

Total Difficulties

7.1 5.7 12.1 7.9 16.81 789 0.85 0.77-0.93 7.5 5.9 13.1 8.1 12.56 365 0.92 0.81-1.03 6.6 5.3 11.1 7.6 11.48 421 0.82 0.71-0.92

Emotional Symptoms

1.6 1.8 2.6 2.5 10.63 789 0.54 0.46-0.61 1.4 1.8 2.6 2.5 8.73 365 0.65 0.54-0.76 1.7 1.9 2.6 2.5 6.96 427 0.46 0.36-0.56

Conduct Problems

1.3 1.6 2.6 2.4 14.43 781 0.78 0.70-0.86 1.4 1.7 2.8 2.4 10.61 364 0.80 0.69-0.91 1.2 1.5 2.4 2.4 9.73 415 0.76 0.65-0.86

Hyperactivity/ Inattention

2.8 2.5 4.4 3.0 14.08 809 0.63 0.55-0.71 3.2 2.6 5.0 3.1 10.49 374 0.68 0.57-0.79 2.4 2.3 3.9 2.9 9.98 430 0.64 0.53-0.74

Peer Problems

1.4 1.5 2.4 2.1 12.66 788 0.65 0.57-0.72 1.5 1.6 2.7 2.2 9.50 363 0.73 0.62-0.84 1.3 1.5 2.2 2.0 8.70 426 0.58 0.48-0.69

Prosocial Behavior

8.6 1.8 7.6 2.2 12.01 806 0.55 0.47-0.62 8.4 1.9 7.4 2.2 8.20 376 0.52 0.41-0.63 8.8 1.6 7.8 2.1 9.20 427 0.61 0.50-0.71

Note. p < .001 for all entries. CI = confidence interval. Possible scores for Total Difficulties range from 0 to 40. Possible scores for all other SDQ scales range from 0 to 10. For all SDQ scales, higher scores indicate greater levels of the measured construct.

RESULTS

Table 5. Banded Scores of Parent SDQ for custodial grandchildren and 2001 NHIS U.S. normative children aged 4-17 yearsa ____________________________________________________________________________________________________________ Low Difficulties Medium Difficulties High Difficulties ________________________________ ________________________________ ________________________________ Custodial NHIS Custodial NHIS Custodial NHIS _______________ _______________ _______________ _______________ _______________ _______________ SDQ Score Range % Sample Range % Sample Range % Sample Range % Sample Range % Sample Range % Sample __________________________________________________________________________________________________________________ Total 0-19 80.2 0-11 82 20-23 10.3 12-15 9 24-35 9.5 16-40 9 Difficulties Emotional 0-5 85.0 0-3 86 6 6.7 4 6 7-10 8.3 5-10 8 Symptoms Conduct 0-4 79.3 0-2 81 5 6.6 3 9 6-10 14.1 4-10 10 Problems Hyperactivity/ 0-7 80.2 0-5 85 8 6.8 6 6 9-10 13.0 7-10 9 Inattention Peer 0-4 83.2 0-2 80 5 6.4 3 10 6-10 10.4 4-10 10 Problems Prosocial 6-10 82.8 8-10 79 5 7.1 6-7 14 0-4 10.1 0-5 7 Behavior _______________________________________________________________________________________________________________ Note. aU.S. data source: 2001 National Health Interview Study as reported in Bourdon et al. (2005)

Research Question #2:Research Question #2:

Do family contextual factors and grandparents’ own psychological difficulties contribute to the adjustment

difficulties of custodial grandchildren?

Daly & Glenwick (2000):

“a grandmother’s adjustment difficulties could influence the way in which she interacts with her grandchild, which, in turn, might contribute to the development and maintenance of her grandchild’s behavior problem” (p. 116).

The Family Stress ModelThe Family Stress Model(FSM)(FSM)

Fundamental Principle:

The effect of caregivers’ psychological distresson children’s adjustment is mediated by poor parenting practices.

Rand Conger, Vonnie McCloyd, et al.

CaregiverDistress

ChildOutcome

ParentingPractices

External-izing

Internal-izing

GMDistress

Poor Parenting

LowSocial

Support

Family Dysfunc-

tion

GM Health

Income

Education

CONTEXTUALFACTORS

GRANDMOTHERADJUSTMENT & PARENTING BEHAVIOR

GRANDCHILDEMOTIONAL &BEHAVIORALPROBLEMS

Note: Contextual Factors Modeled to CoVary

Specific Research Questions Specific Research Questions Examined using Structural Examined using Structural

Equation Modeling Equation Modeling

Ate the Model Pathways the same by:

GC Age - (4-7 vs. 8-11 vs. 12-17) GC Gender - (Boys vs. Girls)

GM Age - (<55 vs. 55+)

GM Race – (blacks vs. whites)

External-izing

Internal-izing

GMDistress

Poor Parenting

LowSocial

Support

Family Dysfunc-

tion

GM Health

Income

Education

CONTEXTUALFACTORS

GRANDMOTHERADJUSTMENT & PARENTING BEHAVIOR

GRANDCHILDEMOTIONAL &BEHAVIORALPROBLEMS

Note: Contextual Factors Modeled to CoVary

Global ResultsGlobal Results

* Groups were far more similar to each other than different.

* The few differences that did emerge, were primarily in terms of magnitude (as opposed to significance vs. non- significance).

* The effect of contextual factors on parenting was primarily indirect through grandmother’s psychological distress.

* For all groups, the effect of grandmothers’ psychological distress on grandchildren’s emotional and behavioral problems was mediated by poor parenting.

- Full mediation for Externalizing Symptoms

- Partial Mediation for Internalizing Symptoms

Overall Conclusions

1. Custodial grandchildren experience more psychological difficulties than children in the general population.

2. A grandmother’s adjustment difficulties are likely to influence the way that she interacts with her grandchild, which, in turn, contributes to the development and maintenance of a grandchild’s behavior problems.

3. Even grandmothers without severe psychological distress may use ineffective parenting practices, as indicated by these findings with a non-clinic sample.

4. Contextual factors (e.g., health, family dysfunction, social support) strongly influence grandmothers’ adjustment.

Practice ImplicationsPractice Implications

* Professionals should screen and monitor custodial grandparents’ psychological well-being, as well as offer support, advice, and referral to reduce probable stressors.

* Interventions to improve behavioral outcomes for custodial grandchildren should involve a combination of modalities that includes parent training, engaging grandparents in positive interactions with grandchildren, stress reduction, and counseling for grandparents’ psychological distress.

* Professionals should focus on the caregiver-care receiver dyad, and not overlook the needs and concerns of care recipients.

Caregiving in Stroke Caregiving in Stroke FamiliesFamilies

Stroke survivors and their family caregivers are both at great risk for depression:

* The prevalence of depression in stroke caregivers consistently ranges from 34% - 52 %, exceeding that of normative and comparison groups.

* Prevalence of depression in stroke survivors ranges from 23% -62%.

* There is a high correlation between the stroke survivor’s depression and that of the caregiver; and depression in caregivers worsens the stroke survivor’s depressive symptoms.

Matire, Schulz, Wrosch, & Newsom (2003):

“A process seems to occur whereby the family caregiver’s poor psychological health negatively affects the quality of care that he or she provides and the care recipient’s negative perceptions of such care erode his or her own psychological health. In turn, such negative effects on the care recipient are likely to further compromise his or her physical health and self-care abilities, which subsequently erodes the caregiver’s psychological health and ability to provide satisfactory care” (p. 599).

- There is abundant evidence that family caregivers tend to be overprotective of stroke survivors.

- This fosters dependency while also lowering the stroke survivor’s self-esteem and perceived control.

- This, in turn, leads to increased depression.

CAREGIVING DYNAMICS IN FAMILY STROKE CARE

Interventions Designed to Assist Interventions Designed to Assist

Caregivers with “Caring About” Caregivers with “Caring About” areare

Scarce Scarce Thompson and Sobolew-Shubin (1993):

“One avenue for improving the quality of life of families who are dealing with a stroke is to focus on the spouse who is providing care. Interventions with the spouse could take several different forms, including education about adaptive caregiving, support opportunities for caregivers and attempts to reduce the burden for caregivers. Education about adaptive caregiving could help inform care providers about the maladaptive effects of overly intrusive care and provide models and suggestions for how to give help without inducing dependency” (p. 379).

Exploratory/Developmental Exploratory/Developmental InterventionIntervention

“Online Intervention to Improve Stroke Care from Spouses”

Funded by: National Institute of Nursing Research [R21NR010189-01A1]

G. C. Smith, Principal InvestigatorG. C. Smith, Principal Investigator M. Dellman-Jenkins, Co-Investigator M. Dellman-Jenkins, Co-Investigator N. Egbert, Co-Investigator K. Nanna, Project Director

Professional Guide

Intervention Components

Education Modules on CR’s Emotions

Stroke-Related Information

Chat Room

Proximal Outcomes

Reduce Caregiver Burden Increase Social Support to Caregiver

Increase Caregiver Mastery, Self-esteem, & Competence

Reduce Caregiver Depression

Reduce Care Receiver Depression

Increase Social Support to Care Receiver Increase Mastery & Self Esteem of Care Receiver

Diminished Overprotection

Final Outcomes

Summary of Main Intervention Components and Outcomes

Increase “caring about”skills

Project StagesProject Stages

1. DEVELOP PROTOTYPE

2. FOCUS GROUPS

- To elicit feedback from Caregivers, Care Receivers, and Professionals

3. USABILITY STUDY

- To determine caregivers ability to use the web-based components and assess their satisfaction

4. RANDOMIZED CONTROL PILOT STUDY

- Initial test of the intervention’s efficacy - 32 caregiving dyads: 16 assigned to treatment condition 16 assigned to comparison condition