Family-to-Family SupportFamily-to-Family Support

Serene OlinSerene Olin

Columbia University/New York State Columbia University/New York State Psychiatric InstitutePsychiatric Institute

Columbia Parent Empowerment Team: Columbia Parent Empowerment Team: Kimberly Hoagwood, Geraldine Burton, Marlene Penn, Kimberly Hoagwood, Geraldine Burton, Marlene Penn,

James Rodriguez, Priscilla ShorterJames Rodriguez, Priscilla Shorter

OutlineOutline

Family-to-Family Support: Components Family-to-Family Support: Components and Research Findings and Research Findings (Hoagwood et al., 2010, Clinical (Hoagwood et al., 2010, Clinical

Child and Family Psychology Review)Child and Family Psychology Review)

Application of Theories of Change to Application of Theories of Change to Family-to-Family Support Family-to-Family Support (Olin et al., 2009, Journal of (Olin et al., 2009, Journal of

Child and Family Studies)Child and Family Studies)

Implications for research and evaluationImplications for research and evaluation

Evolving model: Family Peer Advocates in Evolving model: Family Peer Advocates in Children’s Mental HealthChildren’s Mental Health

Peer parents address stigma, isolation, distrust, and blame that Peer parents address stigma, isolation, distrust, and blame that many parents experiencemany parents experience

RWJ/MacArthur Fdn Survey: Documents increase in # of family RWJ/MacArthur Fdn Survey: Documents increase in # of family organizations, parent membership nationallyorganizations, parent membership nationally

F2F grassroots education programs available for free for parents in F2F grassroots education programs available for free for parents in NAMI, CHADD. 12,000 attended NAMI Basics in first year roll-outNAMI, CHADD. 12,000 attended NAMI Basics in first year roll-out

Workforce capacity shortages; new roles for family peer advocatesWorkforce capacity shortages; new roles for family peer advocates

Peer support billable for adults; billable for families of children in Peer support billable for adults; billable for families of children in some states some states

Goal of ReviewGoal of Review

1.1.To provide conceptual consistency in the definition To provide conceptual consistency in the definition of family support servicesof family support services

1.1.To identify core components of FS servicesTo identify core components of FS services

1.1.To examine various models of FS delivery, and To examine various models of FS delivery, and

1.1.To assess the status of the research on the impact To assess the status of the research on the impact of family support services, and family to family of family support services, and family to family services in particular. services in particular.

Family Support: Family Support: Research Review & SynthesisResearch Review & Synthesis

(Hoagwood, Cavaleri, Olin, Burns, Slaton, Gruttadaro, Hughes, 2010)(Hoagwood, Cavaleri, Olin, Burns, Slaton, Gruttadaro, Hughes, 2010)

Over 200 family support interventions/programs Over 200 family support interventions/programs with caregiver component were examinedwith caregiver component were examined

50 met criteria for having 50 met criteria for having Structured or formal curriculumStructured or formal curriculum Some evaluation dataSome evaluation data Focus on caregiver needs or well-beingFocus on caregiver needs or well-being

Definition of Family SupportDefinition of Family Support

Services or interventions directed parents or caregivers of Services or interventions directed parents or caregivers of children with mental health needs with the explicit purpose children with mental health needs with the explicit purpose of helping caregivers of helping caregivers

(a)(a) clarify their own needs or concerns; clarify their own needs or concerns;

(b) reduce their sense of isolation, stress, or self-blame; (b) reduce their sense of isolation, stress, or self-blame;

(c) provide education or information; (c) provide education or information;

(d) teach skills; and (d) teach skills; and

(e) empower and activate them, so that they can more (e) empower and activate them, so that they can more effectively address the needs of their families.effectively address the needs of their families.

Family Support ComponentsFamily Support Components 1.1. Informational/Educational SupportInformational/Educational Support

Education about child behavior/development, course of mental Education about child behavior/development, course of mental illness and its impact, treatment options, child and family service illness and its impact, treatment options, child and family service systems and other resources. systems and other resources.

2.2. Instructional/Skills Development SupportInstructional/Skills Development SupportA. Coaching caregiver on effective ways to address their child’s A. Coaching caregiver on effective ways to address their child’s illness or behaviors. illness or behaviors.

B. Skill-building directed at addressing caregiver’s personal well-B. Skill-building directed at addressing caregiver’s personal well-being (e.g., communication, problem-solving, crisis management, being (e.g., communication, problem-solving, crisis management, stress management skills) stress management skills)

Family Support ComponentsFamily Support Components 3.3. Emotional and Affirmational SupportEmotional and Affirmational Support

Shared communication among families and/or between providers and families to Shared communication among families and/or between providers and families to promote caregiver’s feelings of being affirmed, understood and appreciated. promote caregiver’s feelings of being affirmed, understood and appreciated.

4.4. Instrumental SupportInstrumental SupportConcrete services such as respite care, transportation, and flexible funds for Concrete services such as respite care, transportation, and flexible funds for emergencies. emergencies.

5. 5. Advocacy SupportAdvocacy SupportA. Provision of specific information about parental rights and resources (e.g., A. Provision of specific information about parental rights and resources (e.g., legislation, entitlements), coaching on ways to effectively negotiate for services, legislation, entitlements), coaching on ways to effectively negotiate for services, or provision of direct advocacy to obtain services for a caregiver or child. or provision of direct advocacy to obtain services for a caregiver or child.

B. Leadership skill building to develop caregiver as an advocate at policy and B. Leadership skill building to develop caregiver as an advocate at policy and service system levels.service system levels.

Comparison of Family Support Programs by Comparison of Family Support Programs by Type of Support and ProviderType of Support and Provider

Type of Support

Family Led (n=11)

Clinician Led (n=33)

Team Led (n=6)

Total Programs

(N=50)

Information Education

n=10 (91%) n=22 (44%) n=5 (83%) 37 (74%)

Instructional/ Skills

Development

n=10 (91%) n=26 (79%) n=5 (83%) 41 (86%)

Emotional n=6 (55%) n=10 (30%) n=6 (100%) 22 (44%)

Instrumental n=3 (27%) n=0 n=3 (50%) 6 (12%)

Advocacy n=11 (100%) n=7 (21%) n=5 (83%) 23 (46%)

Key FindingsKey Findings

Similar activities/functions across provider categories, but emphasis differedSimilar activities/functions across provider categories, but emphasis differed

CliniciansClinicians focused on focused on Skill building related to management of child symptomsSkill building related to management of child symptoms Parent needs, in service of increasing parent capacity to support child treatment complianceParent needs, in service of increasing parent capacity to support child treatment compliance

Family providersFamily providers emphasized emphasized Building skills to increase parents’ personal coping skills, respite, and self-careBuilding skills to increase parents’ personal coping skills, respite, and self-care Cognitions or emotions about experiences with goal of problem-solving child management Cognitions or emotions about experiences with goal of problem-solving child management

issues;issues; Advocacy supports (more apt to recognize and discuss system level barriers than parent Advocacy supports (more apt to recognize and discuss system level barriers than parent

level barriers to service access/participation)level barriers to service access/participation)

Team Led providersTeam Led providers were more comprehensive, with a more balanced were more comprehensive, with a more balanced emphasis across the different types of supportemphasis across the different types of support

What makes Family-to-Family Support Different?What makes Family-to-Family Support Different?

Credibility and trust: peer parents provide a role model to reduce Credibility and trust: peer parents provide a role model to reduce isolation, sense of blame, and facilitate sense of empowermentisolation, sense of blame, and facilitate sense of empowerment

Provides a linkage to community resources and servicesProvides a linkage to community resources and services

Assists parents in identifying their Assists parents in identifying their own own needs and concernsneeds and concerns

Skill building focused on coping, self-care, crisis management, Skill building focused on coping, self-care, crisis management, problem solving skills and other personal skill developmentproblem solving skills and other personal skill development

Emotional support in the form of facilitated sharing of Emotional support in the form of facilitated sharing of experiences and social connections to other parentsexperiences and social connections to other parents

Impact of Family SupportImpact of Family Support

Data on parent-to-parent services is limited; benefits found Data on parent-to-parent services is limited; benefits found most consistently related to caregiver satisfactionmost consistently related to caregiver satisfaction

Data from clinician-led models are most rigorous, and Data from clinician-led models are most rigorous, and generally indicate caregiver support produces superior generally indicate caregiver support produces superior child outcomes compared to standard treatmentchild outcomes compared to standard treatment

Benefits found for parent mental health, parent self-Benefits found for parent mental health, parent self-efficacy, stress levels, and perceived social supports and efficacy, stress levels, and perceived social supports and skills; family functioning; treatment engagement and skills; family functioning; treatment engagement and reduced barriers to carereduced barriers to care

Training Family Peer Advocates: Training Family Peer Advocates:

The Parent Empowerment (PEP) ModelThe Parent Empowerment (PEP) Model

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The Parent Empowerment (PEP) ModelThe Parent Empowerment (PEP) Model

Background: Developed in collaboration with family Background: Developed in collaboration with family advocates, researchers and policy-makersadvocates, researchers and policy-makers

Goal: Better prepare family advocates to more effectively Goal: Better prepare family advocates to more effectively address the needs for families whose children have MH address the needs for families whose children have MH difficultiesdifficulties

Training focus: Training focus: Engagement skills Engagement skills Information/educationInformation/education Emotional supportEmotional support Advocacy supportAdvocacy support Facilitate integration in workforce, with emphasis on roFacilitate integration in workforce, with emphasis on roles, les,

boundaries, core competenciesboundaries, core competencies

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The PEP Framework: The PEP Framework: A Model for Working with FamiliesA Model for Working with Families

Parents as Agents of ChangeModel

Goal: The overarching framework for PEP brings together what we know from the parent support field and behavioral science, and combines them into a model for working with parents.

Principles of

Family Support

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Application of Behavioral Science TheoriesApplication of Behavioral Science Theories

Decades of research have produced hundreds of Decades of research have produced hundreds of studies on factors that influence actions and behaviorsstudies on factors that influence actions and behaviors

These studies rely on a small group of theories whose These studies rely on a small group of theories whose core elements have been expanded into a Unified core elements have been expanded into a Unified Theory of Behavior (UTB) Theory of Behavior (UTB) (Jaccard et al., 1999, 2002)(Jaccard et al., 1999, 2002)

UTB is conceptualized along 2 dimensions:UTB is conceptualized along 2 dimensions:a. Factors that motivate a. Factors that motivate intentionsintentions (e.g., beliefs and expectations, (e.g., beliefs and expectations, attitudes, social norms, self-concept, affect and emotions) attitudes, social norms, self-concept, affect and emotions) b. Factors that determine b. Factors that determine actionsactions (e.g., intentions, knowledge, (e.g., intentions, knowledge, skills, environmental constraints, prior habits, priorities)skills, environmental constraints, prior habits, priorities)

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Expected ValueWhat do I get out of this?

Social NormsShould I do it? What will important others think?

Self-Efficacy/AbilityCan I do it, and do it well?

Intention to Act

Behavior/Action

INTERVENTION STRATEGY

Skills/Knowledge,Habits, EnvironmentalObstacles, Priorities

Possible Barriers

Intervention Target

Adaptation of UTB Model Adaptation of UTB Model

Attitudes/Affect How do I feel about it?

Parent Support …1. Is Individualized

2. Facilitates Linkages

3. Is Respectful and Culturally & Linguistically Competent

4. Builds Skill

5. Increases Knowledge

6. Is Engaging

7. Problem Solves

8. Focuses on Outcomes and Successes

9. Broadens Horizons

10. Promotes Advocacy

Expected ValueDoes parent feel that the

action will have direct impact for child/family?

Social NormsWhat does parent think

important others will think? What do other parents do?

Self-Efficacy/Ability

Does parent see self as competent or effective?

Intentions Action

Family Peer Advocate

STRATEGIES

Skills/Knowledge,Habits, EnvironmentalObstacles, Priorities

Attitudes/ Feelings/Beliefs How does the parent feel about MH, providers or systems, or the action?

PEP Conceptual Framework

Goals

Intervention Target Possible Barriers

What do I get out of this?

What do important

others think/do?

Do I believe I know how to navigate the

system?

Intention to call MH agency

Call MH agency

Advocate Strategies: Provide information, teach skills, share

experience, problem solve, model behavior

Knowledge about disorder, service systems, skills to navigate system,

obstacles, competing priorities

How do I feel about mental illness? (Attitudes, beliefs, stigma, past experiences)

Application of PEP Framework: Parents as Change

Agents

Parent Goal: Understand my child’s behavior

Intervention TargetPossible Barriers

2020

Summary of PEP ModelSummary of PEP Model• Support Active Listening Skills to Give Parents A Voice and Support Active Listening Skills to Give Parents A Voice and

Get The Parents’ StoryGet The Parents’ Story

• UseUse “Principles of Parent Support”“Principles of Parent Support” to Help Parents Set to Help Parents Set PrioritiesPriorities• Determine and prioritize parents’ needs/concernsDetermine and prioritize parents’ needs/concerns• Set realistic goals with parentsSet realistic goals with parents

• Use Use “Parents as Agents of Change”“Parents as Agents of Change” to Make It Workto Make It Work• Determine action with parentsDetermine action with parents• Identify potential strategies to support parents (e.g., provide Identify potential strategies to support parents (e.g., provide

information, teach skills)information, teach skills)• Anticipate obstacles and problem solveAnticipate obstacles and problem solve

Implications of Research Review and PEP Implications of Research Review and PEP Model for Family-to-Family ServicesModel for Family-to-Family Services

Data on impact of family-to-family support is limitedData on impact of family-to-family support is limited Need to examine impact on outcomes for families Need to examine impact on outcomes for families

(beyond parent satisfaction)(beyond parent satisfaction) Research synthesis delineates at least 5 identifiable Research synthesis delineates at least 5 identifiable

components of family supportcomponents of family support PEP model provides a theory-driven approach to PEP model provides a theory-driven approach to

systematically identify points of leverage to improve systematically identify points of leverage to improve impact of family support servicesimpact of family support services

Research on impact of family-to-family support is critical Research on impact of family-to-family support is critical to lend greater legitimacy and sustainability of a critical to lend greater legitimacy and sustainability of a critical and rapidly developing service in children’s MHand rapidly developing service in children’s MH