2.6. Salutogenesis: patient expertise in health and healthcare

Patients reclaim health in health care

Highlights

• Health promotion theory at personal, program and societal levels
• Patient experience informed by salutogenesis
• How the decision to face stressors refocuses personal, program and social resources
• Sense of Coherence as a theory of patient expertise in health care
• How Salutogenesis informs emancipatory and democratic health research.

Introduction

This chapter on Salutogenesis lays the foundation for peer research as an asset based approach, actively tackling health problems by building personal, program and policy capacity to find creative solutions. Pathogenesis is deficit based, studying the vulnerabilities and fallibility caused by illness and loss in order to inform professional practice in healthcare. While health research is defined by problems, peer research works to explain problems in order to find pragmatic, creative solutions for persons and situations. The influence of classical grounded theory in both salutogenesis and peer research is evident because it constantly focuses on a problem in order to produce a coherent solution. This is in contrast to most qualitative patient experience research which is focused on describing problems to identify themes to improve understanding. Salutogenesis theory is used: during co design to explore stressors at the personal and program levels; ensuring data collection covers information, coping and meaning, analysis and interpretation to ensure that the research is comprehensive in identifying stressors and resources and aspects of comprehension, coping and meaning.

In a sentence, Patients can choose to face stressors by calling on personal, program or generalized resources to build wellness capacity and in the process develop a sense of coherence, resilience and confidence. This global asset orientation expresses the extent to which one has a pervasive, enduring and dynamic feeling of confidence that one’s internal and external environments are predictable and that there is a high probability that things will work out as well as can reasonably be expected. (Antonovsky, 1979, p. 123). In short it is the expertise of searching for health and wellbeing in the midst of illness and medicalized care.

This chapter is not a retelling of Antonovsky's theory of Salutogenesis but a response to his challenge to use Salutogenesis to explore new applications, especially the search for new approaches to health related social problems. Salutogenesis became the bridge between current medical health theory and the expertise of patients who have encountered health problems and grown stronger as they faced challenges.

Extended experience within health systems builds patient expertise to face the stressors they encounter, use existing resources and create new resources in health related relationships, programs, transitions and policies. This is the power of peer research - the sharing of experiences to uncover common expertise to inform health care transformation. It is this aspect of salutogenesis that we focus on in this chapter. We consider the differences between patient standardizd experience data of patient oriented research (POR) and patient expertise that emerges from sharing experiences that provide a new patient perspective that informs social change and social innovation in health and health care.

We focus on Salutogenesis as it was revealed in peer research projects across stages of illness, treatment options, health care professionals and especially as part of transitions and discharge. A patient reviewer reinforced the link to positive approaches to health and health care as evident in Headstrong (HEADSTRONG) and the Wellspring (https://wellspringcalgary.ca/) initiatives which highlight self care, resilience and positive mental health skills. The research done at Wellspring informs how health related relationships, programs and policies operate and how programs can become more salutogenic.

Salutogenic theory began in health promotion and used for many years to measure and build personal, program and policy alternatives that counterbalance pathogenesis - the origins and causes of illnesses. Antonovsky, the architect of the theory, saw, in the strength and health of survivors of the holocaust, a theory of health that changed illness, trauma and loss from the enemy of health to being a natural and ubiquitous part of living. It is this personal life strategy and organizational standards that forge an emancipatory bulwark of healing and empowerment that challenges and shifts the outcomes of illness and reduces stress.

The key is the assertion that people have choices. They can adopt an illness based approach that locates stressors as a threat or to see health related stressors as an opportunity to build self knowledge and resilience. The most commonly used feature of salutogenesis is the measure of a sense of coherence that is grounded in three distinct characteristics surrounding our understanding and access to information and trusted guides; how we manage and explore coping strategies; and, how we are motivated to face life with purpose, finding meaning along the way.

The following resources for a salutogenic model are included in open access The Handbook of Salutogenesis, in particular (Mittelmark et al. (2017) , and for an excellent comparison of the salutogenic and the pathogenic model, see, for example, Becker, Glascoff, and Felts (2010) and Vinje, Langeland, and Bull and [PDF] Healing Health Care: From Sick Care Towards Salutogenic Healing Systems | Semantic Scholar as healing approach to health or wellness approach to health and health care.

Salutogenic theory is an elegant description of the complex but effective search for health and wellbeing. The central feature revolves around a way of thinking that focuses on sense of coherence Healing Health Care: From Sick Care Towards Salutogenic Healing Systems | SpringerLink and as a developmental model choosing to challenge stressors and building resources beginning in early education through to preparing to die.

Short background and theory

Aaron Antonovsky (1996) was an Israeli American medical sociologist who became intrigued by the resilience of Holocaust survivors who were thriving in old age despite their horrible experiences as children. He thus became a champion of including wellness as part of a continuum of health. As such it offers a health based theory for everyone, not just those who have been labelled sick or deficient. The salutogenic approach is reflected in recent public health frameworks, beginning with the Ottawa Charter of 1986: ‘Health promotion is the process which enables people to gain control over their health determinants in order to improve their health and thereby be able to live an active and productive life’ (WHO 1986)’. The Charter views people as active agents rather than just ‘victims’ of disease. It shifts agency from professional interventions to the capacity of populations. People, marginalized by systemic discrimination are recognized as holding assets and knowledge that can be harnessed to create health promoting environments.

The central feature of Salutogenesis, a Sense of Coherence, has been described as a deep personal way of being, thinking and acting, a feeling of inner trust that things will be ok independent of whatever happens. As such it taps into wisdom traditions of healing that are connected not only to personal health but indigenous and planetary health movements.

While Salutogenesis is a dynamic and complex theory that continues to develop there are two elements that directly relate to patient experience and expertise. The first is a basic process of building resilience by calling upon available personal and program resources and by developing new resources to face stressors. In this case stressors are what medicine would call threats to health such as trauma and illness. Resources are called Resistance Resources. Generalized resistance resources (GRR) was the initial concept of resources that aligned with the social determinants of health, such as education, employment that help people resist or combat stressors. This has been expanded here to also include program specific resistance resources (PRR) such as safe refuge, writing about experience, and programs built around a salutogenic construct. Individual resistance resources (IRR) such as a pet, a talent for observing are also possible. The second general process is the development of a Sense of Coherence (SOC) that evolves as people build resilience through challenging stress experiences.

As an example, Salutogenesis helps to understand resilience from a seniors perspective. The stress seniors had faced during the world wars and the great depression did not diminish them, it made them stronger and more resilient. Examples included: the loss of male family members, increased the opportunities of children, womens and seniors to take up important roles in the family and the economy. The end result of the study was the importance of struggling to build resilience. Seniors worried that today’s youth were disadvantaged because they did not have opportunities to face adversity and overcome their fear and anticipation of stress.

Salutogenesis was first introduced in the later stages of Grey Matters and crept into our early studies in PaCER as patients came together in research groups to discuss how they overcame their common experiences with health related problems. By sharing concerns they took control by working to explain these concerns to ‘make a difference’. Some examples included figuring out the need for a personal pathway through chronic illness, building capacity of families to discuss end of life options rather than leaving decisions to the head of household in south asian communities, looking for stories of overcoming cancer to counteract the omnipresent wasting and death presence of cancer in indigenous communities.

Salutogenesis aligns with peer action research using grounded theory methods that focus on explaining main concerns in order to uncover positive changes in patient roles, relationships and social organizations. Patient experience research does not stop with discrete experiences of direct care but opens research to shared patient expertise in the search for wellness during and following care.

Salutogenic theory broadened student understanding of patient experience by making explicit the search for wellness in the face of illness and and discrimination. While peer research often starts with concerns about social problems and systemic barriers, the goal is to explain what is happening in order to reframe or resolve the concern from a patient perspective. Looking back through more than 70 studies completed as part of developing this science and method of engagement, one can detect salutogenic themes in the pwle voices that suggested potential goals for innovation.

Looking for and prioritizing stressors as social problems marked the co design or SET stage. During data collection and analysis, grounded theory analysis explored how stressors worked and how resources resisted the force of stressors. As categories of solutions were identified during interpretation, salutogenesis helped most projects ensure that the interpretations were comprehensive and patient centric.

The anticipated changes as part of the fourth industrial revolution point to the need to increase patient expertise about preventing ill health, promoting positive health, and managing ongoing health. In other words the move to prevention and promotion is a move to salutogenesis. This shouts of the need for salutogenic action research done by patients and community members in co-design, academic research (citizen science) and in all forms of social innovation and social enterprise (Ashoka). This needs to occur at three distinct salutogenic levels: the study of personal (micro ) levels of change; meso levels of programs and treatments; and macro levels of policy and society.

Salutogenesis is present throughout this emancipatory science of engagement and all sections of the book because it focuses on the empowerment potential that is often missed. It underlies the shift from traditional patient experience categories of fear, vulnerability, loss and dependence to patient expertise of being in control of information and resources, coping and adapting to challenges, and finding meaning and social connections. This alternative voice often surprised sponsors or those encountering peer research for the first time. This is a long view of health, a narrative informed patient view to complement a professional view of a suffering patient experience within health care.

In section two of the book, we address Salutogenesis theory to guide co design, conducting research and making sense of experience. In section three we shift to the expertise of patients and communities to make a difference. This is because making a difference is not only about how technology and innovation can reduce the burden of illness, it is about increasing opportunities for patients to be part of innovations in care. The fourth industrial revolution in health aims to move health care upstream where the patient will be responsible for detecting problems earlier, deciding on technologies to maintain health, reducing risk of future illness and monitoring health status. Salutogenesis is a theory to inform how to build these new health care practices.

The basics of Salutogenesis as an asset based study of health experience

The area of patient experience is complex, tied to theoretical and epistemological debates about who owns and curates patient experience, the methods and measures used, and how patient experience informs research and practice. A good example of this is Rowland et al who noted that patient experience was constructed through the prevailing ideological systems of a particular moment in time and politics. From the Rowland article we see a clear example of patient experience from the perspective of nursing within hospital settings. It provides insight of ‘vulnerability, embodied experience of being overwhelmed and physical fallibility (the way the body asserts itself). In this view

• Patients are objectified, rendered voiceless (Coyle, Rowland)
• ``We need to hear (patients) at their most vulnerable points to know what is the most important to them, so that we can hope to respond to that. And to learn from it. ... and to imagine and act on how we could do things differently.” (Staff 4)
• Embodied experience of physical dominance, fallibility and vulnerability (Rowland) relates to the ‘the way the body asserts itself when you are a ‘patient’.

The above presents a view of specific patient experience that taps into the loss, pain and fear of illness during hospital experience. The following definitions of patient experience have been slightly adapted from the Beryl Institute for Patient Experience web site (link) to demonstrate the current view of patient experience as it relates to informing health care more generally.

• Patient experience encompasses the range of interactions that patients have with the health care system, including their care from health plans, and from doctors, nurses, and staff in hospitals, physician practices, and other health care facilities. As an integral component of health care quality, patient experience includes several aspects of health care delivery that patients value highly when they seek and receive care, such as getting timely appointments, easy access to information, and good communication with health care providers.
• Understanding patient experience is a key step in moving toward patient-centered care. By looking at various aspects of patient experience, one can assess the extent to which patients are receiving care that is respectful of and responsive to individual patient preferences, needs and values. Evaluating patient experience along with other components such as effectiveness and safety of care is essential to providing a complete picture of healthcare quality.

All of the above experience definitions of patient experience provide information that is considered essential for effective, efficient and sustainable healthcare. These examples lead to methods and measures called Patient Oriented Research (POR). Standardized, patient experience measures create quantified patient experience, outcomes and satisfaction data for ‘big data’ research that compares treatments, systems and populations. For those who are not familiar with these POR approaches the following link provides a very quick overview of the advances made in Australia and the most recent Rand Publication. Overview: What are PROMs and PREMs? The Rand book on PROMS and PREMS) is an excellent review internationally. Canadian readings (link) tie this patient experience research process to our Canadian Strategies for Patient Oriented Research (Ball, Co-building a patient-oriented research curriculum in Canada )

POR is designed for big data analysis of treatment and policy outcomes and as such focus on target behaviours identified by health care professionals and health systems analysts. This manuscript is devoted to a patient perspective; how they see their health and health care and the problems they consider worth investigating. In President Obama’s call to support Precision medicine’s potential, he called for the involvement of patients “Because we want every American ultimately to be able to securely access and analyze their own health data, so that they can make the best decisions for themselves and for their families.” This was indicative of the expanding need to include patient generated and patient owned data.

Recent developments within CIHR and Patient Centred Oriented Research Institute (PCORI) recognize that it is not enough to measure patient experience, satisfaction, outcomes, needs and preferences. CIHR (2011) in the Strategies for Patient Oriented Research patient engagement section, and PCORI (2018) are now including the need to recognize the expertise of patients and to engage them throughout health research and health care. The inclusion of Patient Engagement was also fostered in 2011 with the Catalyze Grant from the Canadian Foundation for Health Improvement. It was Catalyze funding that sparked the PaCER initiative which was created to train patients in peer research to bring a unique patient research voice to health care transformation (note link) In 2017, CIHR set three principles for patient oriented research:

• patients are seen as experts
• All research is solely directed by patient needs
• Patients are equal collaborators within the health care team.

The following table summarizes the main differences of pathogenesis and salutogenesis that are addressed in this chapter. The features of salutogenesis are in keeping with emancipatory social science, citizen health, changemaking and participatory action research including community based participatory research and patient and community engagement research.

Note that the differences present options, not conflict, even though they represent opposite ends of a continuum of health, both options are needed. Our findings support that a salutogenesis approach applies throughout all aspects of healthcare and particularly in those areas most impacted by stress. Stress related illness includes a large portion of health conditions and treatment options.

Figure 1: Comparing Pathogenic and Salutogenic approaches to health research.

We can now look at the elements of Salutogenesis as they relate to Academic peer research and Social Innovation and Enterprise models that use design thinking to make a difference. The table below includes not only the elements of salutogenesis but the roles of citizens.

Figure 2. The role of salutogenesis in qualitative peer research and social innovation

Salutogenesis has become an umbrella for asset based psychology as shown in the diagram below. Find the positive health or asset based theories that you have used and find those that relate to your future goals. Most closely aligned theories are resilience, empowerment, coping, self efficacy, and the theories related to learned theories related to optimism, hope and resourcefulness.

Fig 3 Salutogenic models of positive health, Monica Eriksson©, 2012.

Salutogenesis is one of the most comprehensive asset based theories and it informs many other theories and constructs that have been used in explaining the experiences related to health and health care. Can you locate the constructs that you have used to guide your practice or research?

The nature of health experience

The following diagram introduces a salutogenic continuum of patient experience that leads to valuing engagement and expertise. It has been called a continuum of health that depicts a state of disequilibrium caused by health related stressors in the form pathogens, illness, loss, trauma. The end is called ‘dis ease’ in salutogenesis and represented here as the outcome - premature death. The other end of ‘ease’ or a sense of confidence and optimism relates to a high level of wellness that is not determined by the lack of stressors. This diagram represents a full spectrum of patient experience that will be our reference point throughout the rest of this chapter.

Figure 4: Salutogenesis in everyday use, adapted from Antonovsky, (1996)

The biomedical approach, the red or treatment side with way stations of signs, symptoms and then disability or disabling ill health has dominated health research. The impact of medicine is noted by the treatment paradigm that aims at reduced symptoms and even recovery. This more familiar, or dominant discourse of health calls upon professional expertise to counteract the vulnerability of patients in the face of threats or stressors which are considered threats to health. .

The right or blue side of the diagram could be considered the psychosocial and environmental approach that focuses more on wellness and healthy living. This side provides the health promotion side of the theory with way stations supporting health promotion and citizen health movements of awareness, education and growth. The wellness paradigm here stretches throughout the entire length.

There are several additional features of this diagram. The first being that, while it is a continuum from dis ease (premature death) to ease (high level wellness), it also captures the dichotomous history of medicine. This dichotomy was based on the long held belief that medicine becomes activated when healthy people are attacked by stressors. They are in danger of being damaged either acutely, repeatedly or fatally if they do not receive medical attention. This implies people who are not ill are healthy and that health is not the responsibility of medicine until there is a diagnosis. It is an either / or situation. People easily adopt this dichotomy. When they are diagnosed they relate to that diagnosis. No matter how steady their recovery or how skilled they are, their identity holds onto that label. There are others with similar diagnosis who go beyond the caution ‘accept and work with what you have’ and focus on living a full and productive life’ (reviewer comment). Salutogenesis denies that this dichotomy exists and instead posits that life itself is always in a state of flux with health related stressors a natural part of living. Stressors are not only present, they are essential if we are to learn how to figure out how to cope and create a personal identity of resilience.

The nature of health is also determined by the stage of the engagement with health related stressors. Health experience is depicted by a river that eventually reaches a waterfall which depicts the need to intervene before the person experiences the threat of death if care is not received. The diagram below depicts the nature of experience when viewed as stages of illness that begins at the beginning in the stage of health promotion which either averts to subdues the stressor, with different experiences as the impact of the stressor increases until the stressors are full blown medical symptoms that represent a crisis with dire outcomes. Current health care tends to wait until the symptoms are causing some symptoms at the prevention stage, in addition patients tend to wait hoping that the pain is temporary.

Figure 5: Stages of health and health experience: Upstream focus of Salutogenesis

The early signs of illness used to be picked up during ‘the annual checkup’. Countries who have adopted salutogenic practices have had more success in preventive and upstream medicine by dealing with the cause of illness early. This is best done with an informed public. Solidaristic countries in Europe tend to be those that also have health systems based on salutogenic principles. One can look to the ease of activating citizens to understand the nature of Covid 19 because they understand the origins of health and what they need to do to ensure communal health. Another example would be cardiovascular medicine. As upstream or prevention and promotion approaches are taking hold in heart health initiatives, cardiovascular medicine itself is adopting a more holistic view that it is more effective to prevent than to heroically treat advanced heart problems. In some countries prevention is incentivised in primary care and screening for conditions becoming a regular practice.

It is interesting to revisit the waterfall analogy from the perspective of the fourth industrial revolution. Here the equation shifts dramatically from evident symptoms as the sign for action. The advances in technology based sensors, particularly when combined with artificial intelligence and machine learning will dramatically change the current state of promotion and prevention. I would like to use an example of a colleague who uses wearable technology to study gait in runners. The patterns detected in the strides and rhythms of runners can be used not only to improve performance but to detect, very early, signs of potential strain and stress. These early signs can be used to notify the runner of early signs that can be corrected and thus eliminate serious problems and improve gait. With increased wearables and implanted sensors, early signs of stressors can be caught and steps taken to remedy the emerging problem well before the need for curative medicine is reached. Early signs of diabetes can lead to early kidney and related organ support and supplementation.

While Salutogenesis is more familiar in health promotion theory, it is important to note that the search for health extends throughout the illness side of the continuum. This became very apparent in the early PaCER studies. Patient expertise was not just about their illness, loss, trauma, it was instead about what they had learned in their search for wellness in the face of problems and decline. This period in the development of PaCER had the feeling of new territory waiting to be discovered. An understanding of the search for wellness in difficult times opened doors to ways that health care systems could promote the opportunities for building resilience and a sense of coherence during interactions with healthcare resources.

To understand patient experience we now can look at Salutogenesis and two key psychological processes that impact how health events are experienced and processed: the interaction of resistance resources and stressors, and secondly, the development of a Sense of Coherence through active engagement to resolve the impact of stressors by using existing resources or creating new resources. Most research using salutogenesis focuses on salutogenesis as a personal worldview that has utility in measuring change in resilience and confidence. For purposes of this emancipatory science, we focus on the study of stressors and resistance resources as targets of research. We do this to deepen our understanding of patient experience and more importantly, on how patients develop expertise that has not been recognized or used in health research and social enterprise.

Ubiquitous stressors and Resistance Resources

Stressors

Stressors, or the situations that cause stress are a natural part of life that unbalance or disrupt our sense of health, and may precipitate dis/ease. Antonovsky saw these ubiquitous incidents as instigators of resilience and confidence. Medicine, on the other hand, considers stressors as pathogens to be avoided and controlled. When we pathologize stress we increase the negative impact and increase the damage. That is to say that the degree of ‘dis/ease’ increases when the person becomes trapped in the anxiety of the stress.

The following quote from a current resource on emotional intelligence provides a perhaps unintended example of how seeing stress as negative, increases anxiety and therefore to be avoided or eliminated. I have also added a salutogenic approach to the same situations.

• If you’re unable to manage your emotions, you are probably not managing your stress either. This can lead to serious health problems. Uncontrolled stress raises blood pressure, suppresses the immune system, increases the risk of heart attacks and strokes, contributes to infertility, and speeds up the aging process. The first step to improving emotional intelligence is to learn how to manage stress. Notice how ‘stress’ introduces added level of problems.
  
  Salutogenesis alternative; Identify the stressors that you are facing right now. Is that stress something within you, a stress about your relationships, your work or other activities, your health care, or about a restriction imposed upon you by rules or policy. Name that stress and think about what resources or help you can call upon to ‘resist’ that stress. Share your ideas with others who have also had to face this or with those you trust. Share your analysis with your health or wellness professionals.
• Uncontrolled emotions and stress can also impact your mental health, making you vulnerable to anxiety and depression. If you are unable to understand, get comfortable with, or manage your emotions, you’ll also struggle to form strong relationships. This in turn can leave you feeling lonely and isolated and further exacerbate any mental health problems
  
  Salutogenesis: As you identify the stressors that make you anxious and you work out how to deal with each new stressor you become stronger. You will develop new ways of coping with stress and in the process come to feel less alone and more able to help others.

How stressors work

From a salutogenic perspective, we modify and reframe our stressors as we encounter new situations and develop new resources that have the power to resist the impact of stressors. In research, we make stressors visible by studying overt stress through observations, studying documents and collecting data according to current situations and our common ways of handling similar stressors. The following is an example of a formal classification of stressors that relate to salutogenic theory.

Figure 6 : Common ways to categorize stressors.

Mapping stressors.

A mapping sentence provides a way to analyze the relationships between resources and stressors: This is a handy conceptual tool that can be customized to the program or policy levels. when first using salutogenesis theory to make a difference in quality improvement, action based research and social innovation. It helps by focusing on the nature of the stressor. The sentence doesn’t provide the action but it does sort identified stressors into categories that can also be used when interpreting findings and theoretical constructs. It has been crafted around the general stressor categories listed above but, like most salutogenic tools, the user is encouraged to customize these processes to their research population.

Figure 7 : A mapping sentence of resources from stressors, NJM, 2021

The table below is a compilation of the stressors we identified using a mapping sentence that identified stressors from a community cancer program we observed. We noted during our analysis of stories that there were few incidents of stressors. We asked the question, ‘if this is the resource, what are the stressors it is resisting?’ We worked through our story templates to capture the personal, program and generalized resources that were observed and then categorized the stressors. These categories were further confirmed by a focus group of Wellspring members. We then used the identified stressors when creating the final theory of What works and How in a cancer wellness centre.

The three main categories, fear, loss and emotions, captured the stressors identified and the stressors were then used to inform the action oriented theory of how Wellspring worked.

Fig 9 : Stressors identified in the above mapping sentence process.

Stressors can also be categorized into three three broad and fuzzy categories: chronic stressors (e.g., a disability), main life events (e.g., death of a family member), and daily hassles (e.g., an argument at work) when working with communities or teams where there is general consensus of stressors and the ability of resources to meet the challenges of common stressors. The mapping sentence helps to manage the essential link between stressors and resources in academic qualitative research, action research, citizen science, community based participatory research and social enterprise.

When learning to use stressors in health research it is important that we, as researchers, consider our own experience with stressors. We need to consider what we had been taught or how we were reinforced or punished for talking about stress. Stress in biomedical medicine tends to be at the individual level, but in real life, stress operates at all levels as seen in the mapping sentence. This is important because it will sensitize us to the stressors that emerge from systemic discrimination and chronic untreated health and health related problems. When preparing a mapping sentence with the population you are working with, be sure to notice how common stressors are manifest within our professional experience and the hidden contexts that define cultural experiences of stressors.

When training peer researchers, this process can be initiated using ecological schemes that begin with the individual level and progress to policy levels depending on the ecology of the programs or policies related to the topic being studied. You can then brainstorm the resources at each level and define stressors from individual to system and societal levels. This can then be used to identify potential or actual resources that are available at each level. This is an excellent exercise to build solidarity and an understanding of how stressors and resources are rich sources of data at all levels and how they relate to each other.

Mapping Resistance Resources

The following mapping sentence diagrams are examples of how resistance resources manage stressors at all socioeconomic levels from individual, families and close friendships, natural supports, formal programs and systems, community supports and policy. The mapping sentence below is a general format that can be adapted at individualized program and generalized levels. The first is a general level mapping sentence that is part of salutogenesis theory to expand co design of patient priorities, to frame data collection and to interpret findings.

The following diagram is a published mapping sentence for generalized resistance resources. You will notice that it is an all purpose concept spanning individuals to societal resources. It is the theoretical version of the mapping sentence above.
Figure 10: A generalized Mapping sentence: Handbook of Salutogenesis Chapter 8: https://www.ncbi.nlm.nih.gov/books/NBK435842/figure/ch8.Fig2

The following example of program specific resources mapping sentences can be used to capture how resources impact specific stressors. This is particularly useful with peer research within social organizations that create new roles, relationships and resources to increase a sense of coherence.

Figure 11: Mapping Sentence for Program Specifics

The example below shows the type of mapping sentences used during the Wellspring study.

When we returned to our data, we were able to uncover stressors by analyzing the program specific resources that were in place to counteract stressors that might arise. We shared the stressors we had discovered with members to confirm that indeed these stressors were real. The following is one example. The sentence read: The book of remembrance is a material characteristic of Wellspring as a peer community Cancer wellness Centre that is intended to neutralize the fear of dying by honouring members' lives.

We can also go in the opposite direction, from stressor to resistance resource to catalogue options. “The loss of energy (a common stressor with cancer) is diminished by many energy based therapies that is a characteristic of the self help educational program at Wellspring.

The mapping sentences above provided a way to use what we observed (the program resources being used by patients) to uncover the stressors involved that were difficult to see or hear. Mapping also helped to analyze resistance resources when identifying categories and the core category of the research. The following is an example of Program resistance resources (PRR) in the study of Wellspring. This demonstrates how the analysis process of mapping sentences make properties and themes visible. In Wellspring these PPR fell into two under two general categories, a place to go and Give it a go.

‘A place to go’ identifies what works at Wellspring through the resources provided

• Sanctuary: the building is the antithesis of a hospital or clinic, yet not a home or place of work
• Sharing Energy: many different opportunities to experiment with and practice physical, emotional and spiritual energy programs and therapies. An essential antidote to crushing loss of energy from cancer treatments
• Humour and Joy provide a respite from the vigilance, fears and stress and a chance to learn how to be happy again.
• Mortality and silent presence of death provides a chance to adapt and lessen the tension about dying. The natural presence of death becomes a resource for life.

“Give it a go’ categories describe how the resources are manifested in members.

• Accepting myself by being in a safe space and learning from others like me. ‘This is where I can take my hat off’.
• Encouraging, reducing self blame through learning to encourage others and myself to try new things and make small steps to change.
• Contribution, We support each other and share tasks and there comes a time to become a volunteer at Wellspring.
• Self Worth, We achieve self worth,, building new lives takes time and effort.

The beauty of the mapping sentence process is that it can be created at the individual, program and generalized levels. Individual resistance resources are developed specifically as part of individualized programs to resist specific stressors such as fear of pets, opioid addiction, overeating, and accessing treatment. Program specific resources are those developed by programs to serve the needs of a situational set of stressors, such as integrating children with health needs into regular classrooms, cancer wellness programs, clubhouse models for adults with mental health concerns. Generalized resources on the other hand are just that, they include social determinants of health such as access to after care, improving employment options, basic health literacy in immigrant populations.

Using stressors and resources in research and practice

The materials presented above are based on the first level of understanding salutogenesis: the study of stressors and resistance resources and the interactions between them. These processes were used during the interpretation sessions to increase our ability to understand and make sense of how Wellspring, as a peer led support centre, worked. We were then able to work with members and the board to explore this unseen aspect of the program.

Few resources seemed to reflect generalized resistance resources (GRR) that align with determinants of health such as income, education,and access to health care. This may be because the program was comprehensive in purpose and designed to be fully JEDI or meeting expectations of Justice, Equity, Diversity and inclusion.

In research, we can focus on reducing stress and deficits through building resources or we can study our practice in order to build patient and community capacity. This brings us back to early discussions about JEDI principles that support investigation of program requirements, role expectations and potentially restrictive staff roles and the relationships these engender in meeting JEDI. By focusing on JEDI obstacles patient agency and confidence we can see where current practice can be changed. This process will likely only be possible with deliberate inclusion of patients and communities in evaluating and redesigning programs. You may also informally ask the questions included in the last section of this chapter to explore both challenges and opportunities for change.

Building a salutogenic orientation in health care is very difficult because most patients in primary and even continuing care seldom become part of health based programs within the healthcare system. This means that they seldom have the opportunity to meet with others who share their experience. They seldom have the opportunity to think about their experience as knowledge that could be important to themselves and other patients. If you have the option of introducing peer research and can study patient experience from their perspective you build a window into experience that can be shared with staff and patients. This can be used to build patient and community capacity to foster collective action which may include identifying the sources of power and systems that keep groups dependent and compliant. Peer research findings can be made available to patients and families who might otherwise be isolated.

Building a Sense of Coherence (SoC)

Now that we have some understanding of stressors and resources, we can move to the basic action of salutogenesis, that of building a sense of coherence (SoC). We begin with the idea that exposure to stressors is part of being alive. We can either choose to face a stressor or succumb to it and give it over to others who are professionals to handle it. The basic process might look like the following diagram.

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A stressor creates tension and disequilibrium that presents an option: confront the stress (salutogenesis) or consider the stressor as an illness for experts to figure out and resolve. In this diagram Tension leads to Salutogenesis. In this section we look at how Salutogenesis moves the person toward health and wellness.

Figure 11 above comes from the very early understanding of Salutogenesis which was based on the decisions people could make to take one route or the other. We face each new stressor as a motivating tension that we can respond to. The response moves our position on the continuum toward salutogenesis or pathogenesis. In peer research we have noticed that this is not an either or decision but an organic and dynamic dance of healthcare that includes both clinical pathways and capacity building pathways. Now that we have covered the basic process of building resilience through challenging stressors, let's address what Sense of Coherence is and how to foster and use it to build more active experiences and more effective programs.

Sense of Coherence (SoC)

The following diagram presents Sense of Coherence as a conceptual combination of factors for Change, Confidence and Resilience. This diagram will guide the next section through the three elements of the triangle.

Fig 12 The basics of Salutogenesis as an asset based study of health experience: accessed Nov 2021 internet diagrams of Sense of Coherence

A definition of Sense of Coherence takes some time to digest. To begin, SOC is a general pervasive, enduring and dynamic feeling of confidence. This takes some time to unpack. First of all,’ SoC acts, not externally so that you could see and measure it, it acts as an internal view of the world that influences action. As such it organizes and readies our thinking for action. This begins with our sense that action is possible because we have confidence based on meeting and successfully challenging or reframing stressors in the past. This produces a feeling of safety, confidence and resilience that life makes sense and it is possible to be healthy in spite of health problems. This world view suggests what can be known or done in the world, and, more importantly, how it can be known and done’ (Koltko-Rivera, The Sense of Coherence in the Salutogenic Model of Health - The Handbook of Salutogenesis - NCBI Bookshelf p. 4 ).

A strong sense of coherence (SoC) makes it possible to be flexible and creative in meeting challenges, whereas a weak sense of coherence leaves people with emotional responses (avoidance, depression) and rigid coping strategies that most likely will defer to compliance as part of healthcare systems. If a person believes there is no reason to persist, survive and confront challenges, then that person will have no motivation to move forward. The following amateur diagram was developed early depicting salutogenesis as a person in action. Strong SOC suggests that individuals possess resources (such as social support and ego identity) that enable the person to cope with various kinds of stressful life events.

Figure 13: Concept of Salutogenesis, how it works, Marlett, 1999

This diagram begins with Stressors that are as common as rain falling upon a hapless human. Fortunately that person is standing on a resource platform that would or could help the person stay steady and resist the force of the raining stressors. The sense of coherence is depicted as the umbrella that acts to help the person to stay dry enough to move forward to take the next steps. The three elements of SOC are internalized within the person.

The three properties of Sense of Coherence

The following three properties of SOC enable us to take action.

1. Stimuli from one’s internal and external environments are structured, predictable and can be understood. This is called Comprehensibility
2. The resources are available to cope with challenges. This is called Manageability and
3. These demands are challenges worthy of investment and engagement and in the process we gain Meaning and purpose or Meaningfulness (adapted rom Antonovsky, 1979)

These three properties can be measured in a simple sense of coherence scale. While the three properties overlap in the analysis of the assessment tool, the three categories remain intact in practice. The following is a study of the validity of the 13 item scale (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1757043/pdf/v059p00460.pdf)

The following questions have been created for use in conversations. These conversations are based on the situations that encourage the characteristics. These questions are useful when exploring sense of coherence within a narrative framework.

Comprehensibility: The cognitive skills that help you figure things out

This is the belief that things happen in an orderly and predictable fashion. This develops a sense that you can understand events in your life and reasonably predict what will happen in the future. This is the cognitive component of a Sense of Coherence. You have a better chance to be healthy when you:

• feel life is basically predictable – feel ‘together’,
• feel ready for what might happen in unfamiliar situations.
• understand how your body works
• appreciate your environments
• understand your relationships

You might have the following conversations about Comprehensibility

• Can you understand most things, or do things in your life blindside you?
• Do you have a handle on your situation?
• How do you learn what you need to know to go forward?
• Do you know people you can count on to give you advice?

This is the most widely understood aspect in health care. The following are some of the ways that comprehension is included in healthcare.

Patient Education: SoC encourages a shift in focus from health literacy to patient agency as part of patient education. Health Care educators teach patients the information that healthcare professionals (HCP) need them to know (the treatment and expected outcomes) to reduce patient anxiety and reduce the need to manage information before treatment is begun. However, the study of patient education The standardised cancer booklet and beyond: Patient perspectives on patient education for breast cancer care - Romita Choudhury, Anna Pujadas-Botey, Laura Wheeler, Nancy Marlett, Angela Estey, 2020 identified that patients generally want to know who they can contact when they are unsure of what the process is going to be like, how it will change their life and the resources they will need.

Information Age Medicine: While patients are provided approved information by health care professionals, this is only one perspective of the information available. It is also possible to learn from peers who have been through the process, from experts from around the world and it is also possible to be misled and to spend money on products that promise impact without any evidence. In the near future, Information age medicine will provide more detailed information about the diagnostics that were performed and what the results mean. It will create Artificial Intelligence (AI) of treatment options developed using thousands of cases.

Artificial Intelligence, as machine learning continues to improve, information on choices will provide expected outcomes and when to contact professionals. AI will mean that, if patients choose, they can use AI to treat themselves without the support and advice of their health professionals. In order to capitalize on this aspect of SOC, we need to provide stories to help patients and families understand how to use this new information, how to connect effectively with the doctor, when data impact is limited and when the red flag should be raised to call for support. The gap between what is known and what is safe and reasonable will need to be addressed directly in the near future and it needs to be done with patient input.

Manageability: The instrumental component, using your resources to cope

This is the belief that you have the skills or ability, the support, the help, or the resources necessary to take care of your health. It also means that your personal health is manageable and within your control.You have a better chance to be healthy when you:

• know that there are resources to help you
• believe you have a right to seek them,
• understand and access resources,
• believe you are capable of putting together a plan to understand and ‘manage’ things

Conversations you might have:

• Who do you call on to give you advice (family, faith, professionals, friends),
• When have you had to try a new way to manage things.
• Do you trust that you will be able to handle things that come up.

We see examples of manageability in evidence based medicine protocols. These condition specific care plans are standardized as tools to ensure compliance. Health care fits patients into protocols and expects patients to follow the protocols. However, patients who have been coping and managing chronic and complex conditions are the ideal life experts in customizing and adapting technology.

Some of the advances in current health care related increasing patient capacity to manage their health care include:

Buddy systems pair new patients with experienced patients who are familiar with protocols and can support patients and families learn about protocols and how to safely adapt or modify them. In similar ways peer mentors in training research methods help those learning research skills to practice and apply skills and interpretation.

Wearables track and interpret health data for patients during daily activities and health routines. These have become commonplace aids tracking steps, sleep, health indicators, diabetes data and these will continue as medical technologies specific to conditions will greatly increase patient roles in coping with their health concerns. The current personal use or use by insurance companies and patient data collectors have pushed health upstream with incentives, both personal and incentives of health living, exercise and diet. Citizens are using data to become more engaged in their health and monitoring health care.

Adaptive technologies and implants are changing not only how we live but who we see ourselves. When adaptations are customized for user control, biomedical technologies from robots, exoskeletons, pacemaker implants, and a wide range of adaptive technologies increase independence and productive life years. The changes focus on coping but also connect us to connect to resources automatically such as physicians, technicians and emergency interventions.

Meaningfulness: Motivation and Purpose to engage in your health and health care

This belief is considered to be related to the feeling that health is important and worth the effort. This promotes the motivation to engage with your health and health care. You have a better chance to be healthy when you:

• believe that it is worthwhile to look after yourself
• are motivated to take care of yourself and others.
• when you have a purpose in life that matters to you
• when you are part of community or group that you contribute to

Conversations you might have:

• What makes your life worth living?
• Is it worth putting the effort into handling the problems that arise?
• How do you make sense of “all this”?
• How do you stay motivated?

Meaningfulness is a low priority in health care although purpose and contribution are major factors in extended life years (whether people live or die after health diagnosis and treatment). This was evident in a multiyear comprehensive study by Statistics Canada that included the SoC questionnaire in their study of a representative sample of Canadians and this short measure was a top tier indicator of extended life years. Meaning and motivation denote the ‘grey zone’ of health research that are addressed after ‘accepted methods fail’ or as the domain of traditional or cultural health practices.

While medical science informs discrete causes of illness, this reliance on discovering causes in order to find a cure or remediation has a number of significant drawbacks. We lose our belief that we can understand what makes us well or ill. If there is no identifiable cause, there is no treatment and the person lies outside the perimeter of medicine. People expect science based medicine to identify their problems and experts are responsible for making us well. Finally, people who have not made sense of their conditions, have little appreciation or commitment to our role in personal health, health of our communities or indeed global or planetary health.

We see this in the popularity of Complementary and Traditional medicine which seems to reflect our personal values and philosophical foundations. Alternative and Traditional medicine practices represent the need for a foundation of meaning about health. From the time of Hippocrates, there have been practical theories that explain health and the reason for illness. The boundary between modern scientific medicine and alternative and traditional medicine is increasingly blurred as citizens search for ways to understand health and illness. It may be difficult to bridge the gap between efficient care to meaningful care.

The concept of meaning during an increasing reliance on digital technology must be addressed. If technologies are seens as an extension of the health systems through prescribing technologies that are standardized we will see the perception of external control increase. As a consequence, the goal of a patient centric or controlled health will not be reached. Emancipatory goals can only be reached when patients are informed, data savvy, knowledgeable, and motivated and this can only happen when they believe that they are seen as worthy of control and capable of using technology.

Using salutogenesis in health research and practice

While Salutogenesis is gaining traction in health promotion and prevention, as well as in program development, it is also a way to introduce asset based approaches within medicine throughout all systems of health and wellbeing. As systems are reconfigured, it is suggested that in the future, health systems might add salutogenesis to future planning. It is particularly important that health care practices should not undermine a person's sense of coherence. Treatment should also attempt to support patient resilience through introducing resources to assist patients, families and communities to confront and learn from health related interventions.

From a research perspective, we have seen how Salutogenesis broadens the scope of research dramatically. It increases the scope of co design studies by exploring stressors and resources and ensuring that the three aspects of sense of coherence are explored. During research, these same concepts help categorize data and add to theory generation. The many aspects of Salutogenesis provide models for theory building in health.

When looking to innovation, especially when considering the nature of health futures within the emerging fourth industrial revolution. Technology is becoming a new form of generalized resistance resource that will have great impact on how patients are able to cope with the stress of systems change and the reconfiguration of patient roles.

Summary

This chapter addresses the difference between individual measures of patient experience as specific health care processes and patient expertise that informs social change and organizational concerns. The need to study patient experience and expertise from a positive or salutogenic perspective does not diminish the importance of a pathogenic model. There is the need for standardized measures of experience and outcomes to compare practice over time and program type, the cost factors and sustainability.

Salutogenesis is the most comprehensive and adaptable theory of Citizen Science and Changemaker options. It has proven it’s capacity to guide and challenge peer research while providing a theory base for patients and communities. This simplified version that has been adapted to serve both academic and design thinking research is relatively easy for patients to understand. The challenge may be selling this concept to researchers who have carefully eliminated diverse input, community engagement.

Summary

The theory of salutogenesis provides a conceptual framework for understanding patient expertise through the conscious decision of patients to challenge stressors by using existing resources and building new resources. We have identified a number of ways that salutogenesis can be used in peer research that suggest it is a theory not only for engagement but for action and social change. The following questions may facilitate group discussion about this extended use in peer research.

Questions for discussing with your peers and patients.

1. What theory do you use in your research, or professional practice? Briefly describe so that others may share in your experience?
2. Where are you on the social ecology of health systems - the personal, program or systems levels? Can you work with others to create a ecology of systems to define where your research or practice might fall
3. What were the main aspects of Salutogenesis that you found challenging and why?
4. Where do your clients or research participants gather on the diagram from the illness side of the continuum of disease and wellness?
5. How do you see using Salutogenesis in your training

RESOURCE SECTION

Discourse Analysis: Using Salutogenesis as part of design thinking

This section was created for Section three but is included here because it demonstrates a method for learning and using salutogenic theory to understand patient experience and inform qualitative peer methodology. This example has been contributed by Cera Cruise, a senior student in the Community Rehabilitation and Disability program. Her topic relates to citizens suffering from moral injury. Feel free to explore this data and analysis now or wait until you have completed Chapter 9 on systems theory.

Example

The application of a salutogenic lens gave my proposed design thinking-informed innovation both a measure of self-described patient progress and broke down the components of resilience so that my innovation could be individualized to target the specific needs of patients. The aim of my innovation was to strengthen the SOC of patients using PRRs to assist patients in developing their senses of meaningfulness, comprehensibility, and manageability in response to the stressor of a moral injury. Engaging in the salutogenic analysis gave me a more comprehensive understanding of what the stressors were, what resources were available to patients, and where gaps in treatment lay.