Networks of care: Their value and techniques to engage them

Networks of care: Their value and techniques to engage them Allie Peckham, MSW, PhD. Presentation for the Institute for Life Course and Aging November 10 th, 2016 w w w. i h p m e. u t o r o n t o. c a 1

2 Primary Problem System Sustainability: Shifting Sites of Care Changing Needs of People Increased Reliance on the Informal Caregiver Hermus et al. 2012; Cohen et al. 2012; National Alliance for Caregiving 2009; Fast 2015 2

Applied Relevance 3 What is in the grab bag? Provincial or local level strategies Direct and indirect supports (i.e. respite, self-managed care) Federal level supports Economic supports (i.e. tax credits or compassionate care benefit) Distress, burden, and burnout Caregiver stress and burden often attributed to the medical needs of the care recipient and care responsibilities Very individualized in focus Rajnovich & Keefe 2005; Janse et al. 2014; Lavretsky, Siddarth & Irwin, 2010; Scott, 2013 3

4 Conventional Wisdom Policy Intervention(s) Self-Managed care Direct Compensation Indirect Compensation Counselling Respite Labour Policies Informal Caregivers Resilience 4

5 Conceptual Relevance Resilience the importance of access to: Personal resources The financial burden is so much bigger for these families help them manage their funds Social resources Being able to connect socially these families have lost friends Societal resources The opportunity to talk about your own needs in a system that can...address those [needs] Experts acknowledge need to extend thinking beyond individual-level characteristics Kemp, 2013 Convoys of care Keefe, 2008 The Care Tool Keating, 2011 Care Networks Windle, 2011 5

6 Support for Carers Most interventions for personal and social outcomes Assess integration of interventions that bridge interpersonal-levels with system-, organizational-, and community-levels Complex multi-component interventions are likely more effective in supporting families and strengthening their ability to be resilient (Coon, 2012; Hendrix et al., 2011; Brandon, 2013) 6

7 Theory: Social Capital A focus beyond the individual Broader context Social resources and networks in which caregivers are embedded Acknowledges the importance of structural conditions Effects and outcomes are deeply imbedded within formal and social structures Lin, 2001, Light, 2004 7

8 Theory: Social Capital Strengthening of networks at multiple levels will affect community benefits Bonding: within homogenous groups You need the family for other events- celebrate birthdays, you need to have that kind of thing Bridging: between heterogeneous groups When you build that trust- get to the core of the issue. They will trust you to help them navigate the system Linking: between vertical and formal heterogeneous groups There s numbers of systems. They are patchwork and it depends on having the knowledge of how to access themand that is rare 8

Conceptual Model 9 Social Capital Policy Intervention(s) Informal Caregiver and Family Within Network Bonding Ties Between Network Bridging Ties Formal Front-Line Providers Within Network Bonding Ties Community Agencies, Institutions, Organizations Across Vertical Gradients -- Linking Ties Improved Access to Resources Personal Resources - Education - Knowledge - Finances - Personal possessions - Language Social Resources - Social connections and relationships Societal Resources - Formal supports - Community agencies Resilience 9

10 Data and Methods 10

Methods: Convergent Parallel Design Literature Review 1. Analysis of Secondary Data: Case Study 2. Case Study Follow-up Interviews Findings and Conclusions 11 3. Qualitative Semi- Structured Interviews 11

Case Studies Serving two different populations Employing a modest budget $1,450/caregiver/year (CSP) $3,500/caregiver/year (CF for CMC) Engaging case managers to work closely with families Identify areas of concern Co-create solutions Anticipate what is needed to support families over the longer-term 12 12

13 Methods 1. Analysis of secondary data: case studies Field notes Case manager focus groups (n=6) Case manager interviews (n= 8) Administrative data 2. Qualitative interviews: case studies Semi-structured interviews (n=9) 3. Semi-structured qualitative interviews: Ontario Informal caregivers (n=7) Providers (n=6) 13

14 Findings 14

Access to Resources 15 Access to personal, social, AND societal resources crucial to support caregiver resilience Personal resources alone not sufficient without capacity to manage formal care systems Ethically it is important to address all of the issues not just funding caregivers, but supporting the whole family through the complex system. Access to societal resources a major barrier, need Assessment and support for caregivers within their context Support for front-line providers Education Improved assessment protocols Support equitability and access 15

16 CSP One-Minute Evaluations Overall frustration or need 15 noted personal challenges Including financial concerns, personal health ailments, and lack of knowledge to provide adequate care. 20 stated an overall lack of social resources The lack of time and energy to maintain any of my own interests and activities other than caregiving. Even when I do have time, I m too tired and emotionally drained. Consequent isolation and its negative emotional consequences. 60 mentioned difficulty accessing societal level resources The security of having the same services and possibly access to additional supports if needed 16

17 CMC One-Minute Evaluations What would support them over the longterm? 4 noted social resources Connecting with other family and friends who experience similar circumstances. 10 identified societal level resources 7 trusted professional to assess needs and identify sources of support 3 access to flexible and additional formal supports I need my health to continue; support me emotionally, physically and financially [that] is a huge help. 17

CMC One-Minute Evaluations As a result of the CF for CMC caregivers felt Their quality of life had improved (average 8.7) Their child s quality of life had improved (average 8.8) Their overall mood has improved (average 8.3) Their ability to socialize had improved (average 6.6) Their ability to maintain relationships had improved (average 6.6) Their relationship with family members has improved (average 7.1) They felt more confident knowing where to go for help when they need it (average 7.6) Personal Social Societal 18 Better able to take care of their child over the long-term (average 8.6) 18

Bonding Ties Within homogenous groups (e.g. within-family, within profession/provider group) 19 Supporting healthy bonding ties can offer beneficial social resources Provider to provider bonding ties we believe relationship building with each other is very important so within our office we do a lot of team work Within-family bonding ties we function on the family systems approach Bonding ties represent strongest connection, but generate least added value Baum & Ziersch, 2003 19

20 Bonding Ties Respite to support date nights Support travel arrangements for visiting family Support for family to allow for day trips Support with information sharing/education Formal forum for discussion among professional networks 20

Bridging Ties Between heterogeneous groups (e.g. cross-family, case managers and clients, and/or inter-professional collaboration) Create relationships between people and the system the connection to different community agencies Enhance access to social and societal resources To be effective, ties need to be built on a foundation of trust developed through consistent relationships If they have somebody consistently in that role 21 Warburton et al, 2013 21

22 Bridging Ties Consistency in formal providers Support groups Providing adequate education for formal providers Interdisciplinary care teams Offer support for providers within to attend forums and round tables Combine programming between and across organizations 22

23 Linking Ties Between heterogeneous groups of vertical and formal relations (i.e. community and local government agencies and/or individuals and institutions) Crucial for ease of movement within the system You have a lot of resources. They are all disconnected Crucial for supporting people to re-integrate into society and developing mechanisms to improve access and integration The system needs to be easily accessed. Which it is not Enhance access to personal, social and societal resources McKenzie, Whitley, & Weich, 2002 23

24 Linking Ties Opportunities for training, cross-checking Broader network of individuals at decision making tables Informal networks formally recognized Consistency in care across geographical boundaries Vertical integration Incentives to encourage collaboration among and between health sectors 24

Summary 25 Ties Access to Resources Importance for Improving Resilience Rationale Bonding Social Important but not sufficient Healthy bonding ties can offer beneficial social resources Bridging Personal, Social, and Societal Crucial yet can only be as effective as the system will allow If based on trusting and consistent relationships bridging ties can offer enhanced knowledge and ingress to supports that improve access to social and societal resources. Linking Personal, Social, and Societal Extremely Crucial supporting access to resources as well as the development of other ties Linking ties can offer improved access to societal level resources particularly if organizations, providers, and sectors are linked. 25

26 Discussion and Conclusions 26

Conceptual Model 27 Social Capital Policy Intervention(s) Informal Caregiver and Family Within Network Bonding Ties Between Network Bridging Ties Formal Front-Line Providers Within Network Bonding Ties Community Agencies, Institutions, Organizations Across Vertical Gradients -- Linking Ties Improved Access to Resources Personal Resources - Education - Knowledge - Finances - Personal possessions - Language Social Resources - Social connections and relationships Societal Resources - Formal supports - Community agencies Resilience 27

Theoretical Implications Policy Intervention(s) Social Capital Enriched Informal Caregiver and Family Within Network Bonding Ties Between Network Bridging Ties 2 Improved Formal Front-Line Providers Within Network Bonding Ties Enhanced Community Agencies, Institutions, Organizations Across Vertical Gradients -- Linking Ties Improved Access to Resources Personal Resources - Education - Knowledge - Finances - Personal possessions - Language Social Resources - Social outings - Broader social relationships Societal Resources - Formal supports - Community agencies Resilience 28 28

29 The Strength of Weak Ties The use of social capital to conceptualize the caregiver problem is unique How to develop and improve access to resources to improve resilience Caregiver problem typically classified as being derived from the individual Draw attention to the social- and societal- level constructs that can support or hinder resilience 29

Applied Implications 30 Caregiver resilience may be an individual-level phenomenon but can be supported or hindered by broader social- and societal-level impacts Criteria cannot be too stringent Families who have financial resources It is not just about access to networks, but rather the resources available within networks 30

Applied Implications Increased recognition for supporting people and informal caregivers Patients, caregiver burden, and burnout remain a top focus Approaches for assessing needs and measuring outcomes remain insufficient Findings support necessity of broader frameworks of support to identify, address, and assess networks of care over the longterm 31 31

Conclusions 32 Focus needs to be beyond individual characteristics and medical needs Trusting relationships matter (consistency of care) Access to broader supports through bridging and linking networks Intermittent initiatives will not support long-lasting benefits Social capital theory applied to help explain the caregiver problem Benefits of building formal systems which encourage collaboration and integration 32

33 Limitations, Strengths, and Future Research 33

34 Limitations Gatekeeper approach Caregivers who are less politically apt, more isolated, and marginalized may have offered differing perspective Involving high-risk informal caregiver participation A concern beyond this dissertation Also a concern for policy making processes 34

35 Strengths Expands current thinking Mainstream policy Conceptually The interaction of bonding, bridging and linking can improve access to resources Resources and ties are not separate entities -- rely on, build upon, and interact with each other 35

36 Future Research In 2015, for the first time, persons aged 65+ exceeded the number of persons 0-14 Explore opportunities to improve our adversarial health care system Engage caregiver, provider, and community members to leverage networks of care Comparative work 36

Thank you w w w. i h p m e. u t o r o n t o. c a 37

References w w w. i h p m e. u t o r o n t o. c a 38

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