Minimally disruptive medicine and the mechanisms of social networks to connect and mobilise resources outside of medical care

From:  Anne Rogers,  Ivo Vassilev,  and Anne Kenney; University of Southhampton

The aspiration of minimally disruptive medicine advocates is  to progress the proliferation of  care and management that fit with patients’ goals and contexts that people can make a ‘normal’ part of their life. The power and capacity of personal networks in this equation potentially  takes  this aspiration beyond  the confines of traditional medical and health care settings. A  trial  and a  recently published systematic review of likely mechanisms  and capacities of networks provides some  support for  continuing this line of thinking.

The BRIGHT trial just published http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0109135 was predicated on the development of a programme of work incorporating the notion that social networks are implicated in providing support outside formal health services through the mobilization of resources and interaction with aspects of everyday life (for example, home, family, work, leisure and friends).   The intervention centred on providing patient information incorporating lay-experiential knowledge alongside clinical information and broadening support addressing social and and personal needs through linking patients’ needs and preferences to local community resources. This trial produced positive effects in so far as the intervention was  associated with modest but significant improvements in health related quality of life and better maintenance of blood pressure control for those individuals in the intervention group.   However as with many trials, this takes us only so far.

Key questions remain about identifying the mechanisms of  networks which are relevant here.  We have considered this in a systematic meta-synthesis exploring  network mechanisms as located within a broader social context shaping practices, behaviours, and the multiplicity of functions and roles that network members fulfil.     http://www.biomedcentral.com/1471-2458/14/719.    It seems that 1) sharing knowledge and experiences in a personal community; 2) accessing and mediation of resources; 3) self-management support requires awareness of and ability to deal with network relationships. These elements translate into line of argument synthesis in which three network mechanisms were identified. network navigation (identifying and connecting with relevant existing resources in a network), negotiation within networks (re-shaping relationships, roles, expectations, means of engagement and communication between network members), and collective efficacy (developing a shared perception and capacity to successfully perform behaviour through shared effort, beliefs, influence, perseverance, and objectives). These network mechanisms bring to the fore the close interdependence between social and psychological processes in chronic illness management (CIM), and the intertwining of practical and moral dilemmas in identifying, offering, accepting, and rejecting support. In future then minimally disruptive medicine  might turn its attention to focus a bit more on: raising awareness about the structure and organisation of personal communities; building individual and network capacity for navigating and negotiating relationships in CIM environments and maximising the possibilities for social engagement as a way of increasing the effectiveness of individual and network efforts for CIM.

See our continuing  work  on networks in the NIHR CLAHRC Wessex, EU-GENIE (European Generating Engagement in Networks Involvement), and EU-WISE

http://www.clahrc-wessex.nihr.ac.uk/

http://eu-genie.ohdev.co.uk/eng/

http://eu-wise.com/

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Out with self-management support and in with social network involvement?

Is it time to dump the individualism of self- management support and replaces with a focus on social network involvement which expands with need and saves costs?

By Anne Rogers (University of Southampton)

anne_rogers-2

Minimally Disruptive Medicine is described here in earlier entries to this blog as a service-driven approach to care, co-created with patients (as is the best experience at any service), that makes sense for patients and meets their goals with evidence-based approaches, in a manner consistent with their needs and preferences.

Self-care is often seen as part of that aspiration for co-creation with service providers and has been promoted extensively as part of models encouraging better chronic illness management. The predominant vision for building and enacting self- management capacity has tended to be predicated on the fashioning of peoples’ engagement with this agenda through appeals to normative lifestyles and desirable behaviours.

The literature is replete with references to the focus of self management encouraging the “resourceful patient” as one who should accept responsibility. The whole agenda around self management has been accompanied by a proliferation of terms representing an idealized self-managing individual (“empowered,” “autonomous.” “future,” “expert,” “activated,” “wireless,” “co-producer,” or “flat pack patient”) in the pursuit of confident knowledgable patients practicing self management. In line with this there is an almost exclusive focus on individualistic outcomes such as self-efficacy and patient activation.

This perspective has not only generated a set of interventions which have produced an equivocal evidence base for efficacy, but has masked the power of connections and being linked into networks which provide access to the support that people value and engage with as part of everyday life.

Our recent work in this area at the Universities of Southampton and Manchester indicates that current ways and assumptions of self-management support need to change.

Social network members and dynamics play an important role in the division of labour and the meeting of needs for those living with a long-term condition. We took a network approach to explore self-management support conceptualising it as types of illness ‘work’ undertaken within peoples’ social networks. 300 people from deprived areas and with chronic illnesses took part in a survey conducted in 2010 in the North West of England. A concentric circles diagram was used as a research tool with which participants identified 2,544 network members who contributed to illness management. The results provide an articulation of how social network members are substantially involved in illness management.

Our key findings:

  • Partners and close family make the highest contributions to supporting self-managment but there is also evidence of inputs from a wide range of relationships. Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken in peoples’ networks. In networks with ‘no partner’ other people tend to contribute more in the way of illness related work than in networks with a partner indicating a degree of substitutability between differently constituted networks and that the level and type of input by different members of a network may change according to circumstances.
  • Pets in networks have unique qualities and are not simply substitutes for human relationships in long-term condition management. Pets contribute mostly to managing emotions (emotional work), to enhancing a sense of self identity (biographical work) and to a lesser extent practical tasks (everyday work). Pets mediate relationships for people living with a long-term condition through very weak ties with others in domestic and community settings.
  • The amount of work undertaken by ‘weak ties’ is similar to but less than that of stronger ties. Weaker ties appear more durable and less liable to loss over time than stronger ties. ‘Weak ties’ enable the moral positioning of the self-managing ‘self’ and seem to act on the basis of a strong sense of reciprocity. Weak ties act as an acceptable bridge between a sense of personal agency and control and the need for external support because it is possible to construct a sense of moral acceptability through reciprocal exchange. Access to weak tie resources needs to be taken into account when considering the ways in which systems of health implementation for chronic illness are designed and delivered.
  • Our most recent analysisexplored  how people’s social relationships alongside the availability of social capital operate in their local community . Over a one-year period, we found that social involvement with a broad variety of people and groups supports peoples’ own management of their condition and contributes to physical and mental well-being. Evidence of a positive care law was indicated by the fact that Personal networks input was found to expand in accordance with health needs so as to provide assistance in coping. Network support was found to substitute to an extent for formal care and provide substantial savings in traditional service utilisation costs.

We need to recognise the importance of social networks and social involvement and find ways to incorporate such knowledge into future ways of managing long term conditions. Support for self-management which achieves desirable outcomes should be seen less as an individualised set of actions and behaviour and more as a social network phenomenon. Interventions and strategies for chronic illness management require a greater focus on harnessing and sustaining the capacity of networks and the importance of social involvement with community groups and resources for producing a more desirable and cost-effective way of supporting long-term illness management.

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Learn more about the work of Dr. Rogers’ and her team here:

http://www.clahrc-wessex.nihr.ac.uk/our-six-research-themes/engagement-with-self-directed-support

http://eu-wise.com/eugenie-the-eu-wise-intervention/

 

 

The Caregiver Corps – let’s do it!

Caregiver Corps: Tapping A Nation of Caring People

By Janice Lynch Schuster

I recently participated in a Twitterchat (#eldercarechat), where someone raised the question of what we want government to do to improve the lives of the nation’s 60 million family caregivers. Someone suggested creating a Peace Corps-like program to recruit new graduates to serve family caregivers. I immediately volunteered to launch a petition to do just this, and wrote one on the White House website, which encourages civic engagement.

My petition is very short. It seemed to me that in the context of trying to raise interest and garner signatures, I needed to be to the point (http://wh.gov/GURc). It reads:

We petition the Obama Administration to: Create a Caregiver Corps that would include debt forgiveness for college graduates to care for our elders.

More than 60 million Americans are family caregivers. They face challenges: Health suffers. Finances suffer. Families suffer. Aging Boomers will overwhelm our caregiving resources. Let’s create a Caregiver Corps, that would marry college debt forgiveness with programs that place recent graduates with families and aging services providers. Let’s bridge the generational divide that promotes ageism. Let’s do it!

One of my Twitter followers admonished me for my lack of detail. Without it, she said, no one would would take me seriously.  The idea is in its early stages, and would require thoughtful analysis and number-crunching by experts. But in the meantime, here’s the general idea for it.

Why We Need a Caregiver Corps

 Several demographic trends are creating a future that will leave families and our beloved elders overwhelmed, exhausted, and bankrupted by the challenges of living with old old age–that is, living past 80–with multiple chronic conditions that will, no matter what they do, kill them. In any given year, some 60 million Americans serve as family caregivers to another adult, someone who is either old, disabled, or both. (And millions more care for children and young adults who live with serious disabilities, and face even more challenges in terms of education, employment, and so on.)

These families will run square into a medical system that is not prepared to care for them in the ways the need most.  These individuals might sometimes need rescue and cure—but they will more often need long-term supports and services, and help with things like transportation, hygiene, and food.  And while they’ll have plenty of access to ICUs and new hips and knees—they will be shocked and disheartened by the costs of all the things they will need to pay for on their own: private-duty nurses, for instance, and home care; transportation and food and skilled nursing care. Unless these families spend-down to become Medicaid beneficiaries or have adequate long-term care policies, their costs will be out of pocket. And those costs will be beyond reach for most middle-class Americans.

In the meantime, the social services agencies meant to serve aging Americans continue to be devastated by short-sighted budget cuts. Sequestration alone, one estimate suggests, will eliminate 800,000 Meals on Wheels in the State of Maryland.

And there will be few people to provide the hands-on care that these adults will need. The nation faces a profound shortage of people trained in geriatric care, from geriatricians to nurses to direct care workers. These shortages stem, in part, from the relatively low pay geriatricians earn, and the outright unlivable wage direct care workers receive. By one estimate, by 2030, when all of those Boomers are in their dotage, there will be one geriatrician for every 20,000 older adults.

A Caregiver Corps: Hope—and Help–for Us All

What’s a country to do? Launch a Caregiver Corps, a program modeled on similar valuable, successful, and long-lived efforts, such as the Peace Corps, AmeriCorps, VISTA, and Teach for America. The program could recruit volunteers: high school graduates not trained for the workforce; college graduates facing a tough economy and huge undergraduate debt; and older adults, those healthy enough to want to remain in the workforce and contribute to others’ well-being.

Volunteers could sign up for a year or two. In exchange for their service, they could earn tuition credits to cover the cost of college; they could receive some degree of loan forgiveness, to lessen their burden of debt; they could be paid a stipend that acknowledges the value of their work. They could be assigned to community-based organizations that serve older adults, such as Area Agencies on Aging, non-profit health care institutions, social services agencies, and others.

While volunteers could offer enthusiasm, compassion, and insight, they could also learn the kinds of skills required to care for an older adult and his or her family. They could learn about the public policies that affect that care. They could acquire medical and nursing skills—the kind of skills family caregivers use routinely in their daily routine. They could be exposed to older people, and bridge the generational gap that splits our country on this demographic. In the end, they might even be inspired to pursue a career that features caring for one another.

That, it seems to me, is something Americans have always done best—and will have to do more, as we all reach our own old age. Developing people who have the skills, resources, and motivation to help us in our self-interest. And it is in theirs, too. Millenials face the highest unemployment of any group in the country, and finding ways to become marketable, employable adults is critical to their own security and future.

So, let’s try it. Let’s create a Caregiver Corps. Let’s get the Administration to think about it, and weigh in. It’s time, really, to move forward. We need 150 signatures to push the petition to the public pages of We the People. Please take a moment to add yours:

https://petitions.whitehouse.gov/petition/create-caregiver-corps-would-include-debt-forgiveness-college-graduates-care-our-elders/vZ5WhStx

Janice Lynch Schuster specializes in writing about aging, caregiving, and end of life issues, and is a co-author of an award-winning book on the topic, Handbook for Mortals: Guidance for People Facing Serious Illness (Oxford University Press, 2012).