Conditions which facilitate empowerment

This can be information about a genetic diagnosis, genetic risk information, information provided by a genetic test, or information about risk management options. Patients are encouraged to reflect on multiple possible consequences for their own life circumstances before they make their decisions.

Different people will make very different decisions, depending on their own life goals and values. The important outcome for the patient is the ability to make those decisions. We believe that these approaches have implications for the design and evaluation of patient empowerment initiatives in other areas of healthcare e. At present, we know that many patients with chronic conditions do not comply with what health care professionals consider optimal management strategies. However, we do not know whether this is mainly because patients want to comply, but struggle to and want help, or because they have priorities other than maximizing their health status.

Previous research suggests that while some aspects of the decision-making of people with diabetes follow a narrow biomedical or strictly instrumental model of rational decision-making, that aims to maximize health status, other aspects do not [ 41 ]. Instrumental rationality focuses on outcomes and is concerned with the best means of achieving those outcomes.

This simple model underpins the use of measures of health status and quality adjusted life years QALYs in economic evaluations to inform health policy and health care decisions. This simple model can be expanded to incorporate important constraints. These are first, that people use a set of social norms to which they subscribe as part of the decision-making process.

These shared rules are fundamental to a comprehensive model of rational choice. As a consequence people treat the gathering and use of complex information as a cost, and will accept what appears to be a sub-optimal outcome to limit the search for further information.

Finally, individuals use judgements rather than explicit calculations of expected costs and benefits in reaching decisions and making choices. These judgements incorporate their perceptions about what that choice signals to others as well as probabilistic, social, moral and ethical uncertainties about themselves and the world.

These broader models of rationality provide insight into possible reasons for non-compliance with medically optimal strategies. Combining this broader definition of rational decision-making with a patient empowerment approach would require clinicians to be more open minded and explicit about what outcomes patients might want, what norms and constraints the patient feels are important, the values and uncertainties the patient considers apply to themselves and the world.

Within this broader framework, clinicians can explicitly work with patients to make informed decisions about what goals are important to them, and how best to reach those goals. Such an approach is likely to result in significantly greater positive participation in healthcare.

Perhaps a PROM of patient empowerment, used alongside measures of self-reported health status and healthcare service use, could capture those other valued patient benefits even amongst those who do not derive dramatic health status benefits, or may even be used to offset losses in health status.

It is important to stress that the two types of outcome are not necessarily, or even usually, exclusive. Most healthcare professionals and patients strive to ensure that both outcomes are achieved. However, where trade-offs are made, it will be important to understand the trade off, or relative preferences that people have between health status and empowerment.

As yet there is no universally accepted generic model or measure of patient empowerment to enable comparative evaluations of different services. No two measures of patient empowerment have operationalised the same theoretical construct. Even so, a brief examination of some available measures confirms areas of convergence around dimensions of decision-making, control, self-efficacy mastery , and self-management of disease see Table 1.

So a case for developing a generic definition theoretical framework of patient empowerment can be made. A robust generic theoretical model of patient empowerment would form a sound basis for selecting, developing or re-developing a generic PROM to capture patient empowerment for use in evaluating healthcare interventions and policies.

But it is premature to choose or specify a generic model of patient empowerment at this point. This work should precede selecting, developing or re-developing a generic PROM to capture patient empowerment. Further work to explore relative preferences between health status and empowerment constructs, using a combination of qualitative research and discrete choice experiments, would also be useful.

Another challenge associated with introducing the measurement of empowerment relates to the current policy focus of maximising health status [ 1 ]. The result is that the benefits of most technologies and interventions are valued by changes in health status and decisions to fund them are informed by evidence on the cost per additional QALY gained.

We are now valuing different healthcare interventions using different metrics, which means that another layer of value judgements must be made to answer: Which should we prioritise, improvement in health status or improvement in empowerment? It is possible to view healthcare interventions as being on a spectrum between those that purely maximise health e.

However, it is possible to conceive that the latter, if done well, could contribute significantly to the former, and indeed this is the basis of most self-management interventions.

This issue indicates the need for more research, which should focus on understanding a how best to maximise both types of outcome for patients with chronic diseases and b any trade-offs that patients current and future make between maximising health and empowerment, using robust methodologies, such as discrete choice or best-worse experiments. Research of this kind could facilitate further moves away from compliance towards adherence and increasing patient empowerment, for example through patient-centred processes such as shared decision-making.

In summary, patient empowerment is firmly on the health policy agenda in the UK and elsewhere. Patient evaluations of healthcare have become increasingly important, and strategies in place to increase patient empowerment in the NHS include wider use of PROMs, personal health budgets and personal health plans. There is also some evidence to suggest that patient empowerment may be a valued outcome from healthcare interventions that is related to, but independent of health status, and furthermore, that patients may value empowerment as an outcome even if they do not maximise their health status following a healthcare intervention.

However, there is no widely accepted, effective method for evaluating whether healthcare strategies and interventions do, in fact, empower patients. Research is needed to clarify and tighten up the concept of patient empowerment and ensure patient, clinician and policy consensus on what is important to include. An appropriately robust theoretical framework of this kind would enable re -development of a robust generic measure of patient empowerment. The intention is not to replace existing healthcare evaluation methods, but to supplement them to facilitate re-orientation of services away from compliance towards increasing patient empowerment.

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Clinical Genetics. From this model, it is possible to propose specific strategies that can be used to promote empowerment on the levels we discussed earlier in the chapter. This process is explained further in Case Study The empowerment process starts when the individual identifies an injustice that she or he has experienced.

Joe grew up in a rural town in Missouri to a family with few economic resources. He was born with Down syndrome, and from his earliest memories recalled being stared at, whispered about, laughed at, and treated differently. In an effort to help him, his parents would always decide what was best for him and advocate on his behalf at school and in the community.

When Joe tried to speak up and express himself he was either ridiculed by his peers or defended by his parents. As a result of these experiences growing up, Joe felt disempowered and defective. But, he resolved later in life to find others like him and see if he could do anything to change things for people like him.

Joe became aware of historical inequalities, injustices, and grievances that have not been attended to, such as the mistreatment of people with disabilities in his rural town. Joe began to network and organize with other people with disabilities, and expanded beyond those with Down syndrome to include other people with disabilities. He recalls being shocked at the number of people he met while trying to form a support network.

While networking and researching, he discovered the People First movement, which was formed to promote the sharing of ideas, cultivate independence and friendship, and advocate for people with disabilities. According to this empowerment model, there are several factors that determine the degree of effectiveness of the individual or group in seeking power redistribution. In the case of Joe and his People First chapter, they were a dedicated group committed to influencing the community on multiple levels.

They began to petition the local government to offer special accommodations for people with physical disabilities, such as wheelchair ramps and accessible seating on public transit. Joe wanted to change how people viewed and talked about disability, to ensure that kids growing up with disabilities were not ridiculed and picked on.

Their group possessed factors necessary to implement meaningful change and empower not only themselves but many others like them in their community. These factors included knowledge of rights and responsibilities, level of skills and degree of self-efficacy as well as the result of cumulative experience, challenges, and successes in attaining personal and group goals. What can be unexpected when working in Community Psychology are the counteractions taken by the opposing individual, group, or organization.

Some educators questioned the need for having time taken from their classes to educate students on People First language. Sometimes the individual or group runs out of options, exhausts their resources, or gets demoralized and concedes defeat. There is no guarantee that the process will result in greater power to the aspiring individual or group.

It takes time to empower oneself and to empower a group of people, and there may be setbacks before achieving meaningful power redistribution. The resulting changes in power redistribution may stop the process if the parties are satisfied, meaning the person or group aiming for empowerment feels they have achieved their goals. At some future point, the parties may resume the process in order to pursue better results.

Along with the empowerment model presented here, individuals may use a variety of strategies to address power imbalances Fawcett et al. These strategies can help reduce or eliminate barriers, develop networks, and educate others in the community see Practical Application They can also create opportunities for capacity building and allow participants to advocate for changes in policies, programs, or services.

To promote empowerment at the environmental and societal level, it is important to examine national, state, and local policies.

Many programs and services unexpectedly place barriers and stressors on oppressed groups, such as people with disabilities. Ultimately, empowerment efforts are directed at promoting social justice. The strategies highlighted in this chapter can serve as a guide for individuals interested in promoting empowerment in their communities. It should be noted that there are many tactics that have been used to promote change over time.

For example, Sharp researched and catalogued methods of non-violence actions to promote social change and provided a rich selection of historical examples of the tactics. The tactics below help in thinking about the best approaches to advocacy. Each tactic is supplemented by a real-world example that can help you think of ways to advocate in your community. A fundamental principle of Community Psychology is that individuals have the right to live healthy and fulfilling lives, regardless of their ability levels, gender, sexual orientation, race, ethnicity, income, or other characteristics.

Community psychologists support the most vulnerable groups of society in their quest for justice and equality. We can work with historically oppressed groups as they claim their rights and their own personal and cultural identities. Research and advocacy efforts must continue until full participation in society has been achieved.

Community psychologists are continually working to refine the effectiveness of empowerment and advocacy efforts. In this chapter, we have provided definitions and successful examples of empowerment and identified some of the strategies, predictors, and facilitators in our efforts to achieve power redistribution. Consistent with an ecological approach, community-based participatory research methodologies help us include the voices of historically oppressed groups in our research and advocacy efforts.

Partnering with historically oppressed groups allows us to better understand oppression and allows us to work toward developing effective ways in which they can gain power to address their unmet needs. Our goal is to work toward a more fully empowered and empowering society and realize the promise of equity and quality of life for all. This ongoing commitment will continue to propel our social and community change efforts into the future! Take the Chapter 10 Quiz. View the Chapter 10 Lecture Slides.

Anckermann, S. Psycho-social support to large numbers of traumatized people in post-conflict societies: an approach to community development in Guatemala. Balcazar, F. Promoting Empowerment among Individuals with Disabilities.

Bond, C. American Psychological Association. Bond, M. Empowerment, diversity and collaboration: Promoting synergy on community boards. American Journal of Community Psychology, 21 , Cattaneo, L. The process of empowerment: A model for use in research and practice. American Psychologist , 65 7 , — Dworski-Riggs, D. Elucidating the power in empowerment and the participation in participatory action research: A story about research team and elementary school change.

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American Journal of Community Psychology , 41 , Nelson, G. Palgrave Macmillan. Palmer, L. Oppression and power. Peterson, N. Beyond the individual: Toward a nomological network of organizational empowerment.

American Journal of Community Psychology , 34 1 , — Rappaport, J. In praise of paradox: A social policy of empowerment over prevention. Being an empowering facilitative leader is the single most important aspect of the culture change journey. For person-directed care to become a reality, facilitative leaders must create an environment flexible enough that teams can make decisions on the spot and adjust to the needs of the moment.

Care partnership, as The Eden Alternative defines it, really supports the idea of empowerment. This often reinforces helplessness on the part of the care receiver, who, over time, is conditioned to give in to this passive role. The result is a burned out, depleted caregiver and an unempowered care receiver. Care partnership calls on everyone involved in the care relationship to see themselves as partners in care.

As care partners, we learn to recognize that every individual has something to offer another, no matter what challenges they may live with. This evens the playing field and acknowledges that care is really about the subtle dance of giving and receiving alive in every moment between two people.

Empowerment, then, is about all kinds of teams — care partner teams in nursing homes, in assisted or independent living, in small homes for people living with different abilities, or a care partner team that includes an Elder who lives in her own home. No matter where we live, how can we empower each other, as care partners? Feeling empowered is vital to our continued growth and development, no matter who we are, or where we live or work. All this said, facilitative leaders may find themselves bumping up against some team anxiety or resistance to develop their own leadership skills and take on more responsibility.

Facilitative leaders might feel discouraged or even waver in their commitment to create a participatory environment when teams push-back. Hanging in there will be well worth it.

On Tuesday, March 19 th from 3 to 4 pm ET, three culture change leaders who work in three distinct care environments will come together to explore empowerment of teams in different settings. Click here to register. Enter your email address to subscribe to this blog and receive notifications of new posts by email. Email Address. Contact Us Facebook.