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Quality of Life when Living with MS
''Why Choose Hope?''

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Hope Related Abstracts News Headlines What is Multiple Sclerosis? Quick Reference Guide
On 23 March 2009 Psychology Today published an article titled "Why Choose Hope?" by  social psychologist Professor Barbara  Fredrickson, University of North Carolina. Professor Fredrickson observed:
Hope "Hope and fear are not mere words or facial gestures. They’re deeply felt neurochemical stances toward our current circumstances  – stances that alter our outlooks, our actions, as well as the life paths that unfold before us. Hope is not your typical form of positivity. Positive emotions arise when we feel safe and satiated. Hope is the exception''.
What is changing regarding Multiple Sclerosis?
Since 2009 it is being demonstrated that many of the most common disabilities experienced by many with MS can improve following treatment for an underlying blood flow irregularity called chronic cerebrospinal venous insufficiency (CCSVI}. Australia is at the forefront of this research through a long term clinical trial being conducted at the Alfred Hospital in Melbourne. More than 80% of those tested are shown to have this condition. It is yet to be established to what extent (if at all) such irregularities also contribute to MS progression. What is known is that the disabilities that improve (following CCSVI treatment) significantly correspond with those reported by most people diagnosed with MS. The next update from the Alfred Hospital is expected by mid 2018.
Functional Improvements
Some improvements are immediate and some progressively occur over time. Commonly reported are cognitive improvements, improved vision, reduction in fatigue, improved coping, 'cold feet' becoming warm and the disappearance of 'head fog'. Less common, though still significant, are improvements in bladder function and mobility - more about the scope of these improvements. While this discovery is of enormous significance in addressing the 'physical health ' issues encountered by pwMS it can also dramatically impact on the Quality of Life perceptions of families living with MS.
Hope - a Powerful Element in the Quality of Life Equation
Quality of Life For many, awareness of these developments influences the environment in which multiple sclerosis has been portrayed for generations. In so doing a new framework for measuring QoL perceptions and associated coping strategies is emerging.. An environment of 'hope' - a powerful element in the MS Quality of Life equation  - view a presentation by Kerri Cassidy that poignantly illustrates the pivotal role of 'hope' in this rapidly evolving environment.
Impact of Entrenched Belief Systems
It was not until September 2017 that we began to see research (Universities of Edinburgh and Calgary) relating to the global impact of CCSVI inspired "hope" on broader  MS environments. Also in September 2017 the Mayo Clinic, under the title "When Patients and Their Families Feel Like Hostages to Health Care" published guidance for clinicians regarding the potential for power imbalances to impede the delivery of high quality patient centred decision making.

Creating awareness of the environmental factors that influence the development of 'healthy' perceptions of a person's world (as opposed to those that are 'sickness' based) formed a significant part of the life work of Erik Erikson. A snapshot follows to stimulate further exploration.
Earlier Research - Hope and Multiple Sclerosis
 A January 2014 study by Australian researchers, published in Journal of the International Society of Behavioural Medicine, observed that hope is an important resource for coping with chronic illness; however, the role of hope in adjusting to multiple sclerosis (MS) has been neglected, and the mechanisms by which hope exerts beneficial impacts are not well understood.
Although previous research suggests that hope may play an important role in adjusting to chronic illness, only two previously published quantitative studies have examined the role of hope in adjusting to MS - with relatively small samples.
Hope is a Potent Protective Resource for People with MS
The study is built around a framework that identifies goal-directed thinking as having two components -  the "will" and the "way". First, people believe that they have the capacities to come up with the routes to desired goals. This is called pathways thinking. Second, when people believe that they have the requisite motivations to actually use such routes, this is called agency thinking - or the ability to act independently and make your own choices. To hope is to have both the will (agency) and the ways (pathways) to pursue desired goals
In exploring these issues across 296 pwMS over a 12 month period researchers (Madan S, Pakenham K) at University of Queensland School of Psychology found that those with high hope had more positive state of mind, greater life satisfaction and less depression. Interestingly hope buffered the effects of high stress, so that under high stress, there was an even greater difference in favour of those with high hope, and they were considerably less anxious.
Researchers observed  "confirmation of the stress-buffering effects of hope in the context of chronic illness is noteworthy  given the dearth of similar research. Findings also contribute to our understanding of the mechanisms by which the two dimensions  of hope operate to shape wellbeing"

They went on to say "Hope is a potent protective resource for pwMS".

Intervention Strategies are Warranted

Regarding practice implications, the findings suggest "benefits in promoting hope in people with MS. Hope may be fostered through identifying valued and personally meaningful goals, defining them in clear measurable terms, and identifying multiple potential avenues through which goals can be attained. Several hope interventions have been developed and show promise in assisting people with chronic illness"

Sentiments along similar lines were also expressed by Professor George Jelinek when he said, inter alia:
How often have people with MS been told that they should not be given 'false hope' by their treating clinicians?
 Perhaps this is to some extent explained by the fact that doctors treating PwMS have had little research about hope on which to base their views. For those clinicians who don't like to give people false hope, the results may come as something of a surprise! 

 Hope is important; the science is clear" - more about these comments
Measuring Individual Hope Perceptions
Shortly after the introduction of what is known as "hope theory", self-reporting scales based on this definition were developed and validated. The most widely used instrument is a trait-like index called the Hope Scale. This Hope Scale for adults consists of eight items on which respondents rate how true each item is of them. There are four pathways items (e.g., "I can think of many ways to get out of a jam") and four agency items (e.g., "I energetically pursue my goals"). Summing across the eight items, the total Hope Scale score is derived - find out more
Empowerment In terms of interventions, few would question the impact of CCSVI developments in strengthening pathways and agency thinking amongst many Australian families living with MS - browse some testimonials. When commenting on the study outcomes Kerri Cassidy, CEO of CCSVI Australia said:
Hope is important and here is the evidence! I love how this study speaks of 'agency' or the ability to act independently and make your own choices. To feel like you have no choice or control is so stressful.
Watch a video by Kerri on this topic.

Be empowered people - it's good for your health!"

The study outcomes and associated methodologies prompt questions about the adoption of this approach as one of the tools to assist in quantifying the enhanced quality of life perceptions experienced by many following treatment for CCSVI related irregularities. While the results of treating several hundred Australians are consistent with those experienced elsewhere there is, as yet, no national registry and/or consistent processes to holistically monitor and learn from the ongoing outcomes. This is extremely unfortunate as much valuable knowledge is at risk of being lost

Impact on Carers
A companion study "The stress-buffering effects of hope on changes in adjustment to caregiving in multiple sclerosis" (November 2013) examined the direct and stress-buffering effects of global hope and its components (agency and pathways) on 140 carers and their care-recipients. Regarding hope components, only the agency dimension emerged as a significant predictor of adjustment. Findings highlight hope as an important protective resource for coping with multiple sclerosis caregiving and underscore the role of agency thinking in this process
Why Choose Hope?
In an article titled "Why Choose Hope?" Barbara  Fredrickson, a social psychologist at the University of North Carolina observes
"Hope and fear are not mere words or facial gestures. They’re deeply felt neurochemical stances toward our current circumstances  – stances that alter our outlooks, our actions, as well as the life paths that unfold before us. Hope is not your typical form of positivity.  Most positive emotions arise when we feel safe and satiated.
 Hope is the exception.

It comes into play when our circumstances are dire – things are not going well or at least there’s considerable uncertainty about how things' will turn out. Hope arises precisely within those moments when fear, hopelessness or despair seem just as likely".

Erik Erikson, the psychoanalyst who became one of the most famous and influential thinkers of the twentieth century, identified Hope as the 'self quality' that underpins the development of all "healthy" individuals when he said
"Hope is both the earliest and the most indispensable virtue inherent in the state of being alive.
 If life is to be sustained hope must remain, even where confidence is wounded, trust impaired."

 (The Erik Erikson Reader, 2000).

More about the work of Erik Erikson and associations between his understandings and multiple sclerosis.

What Really Matters
Kerri Cassidy's earlier address at the April 2013 official launch of CCSVI Australia as an incorporated organisation epitomised all of these understandings - an important reminder about what really matters. The examples provided by Bill Younger, Chair of CCSVI Australia and former CEO of MS Australia cemented these thoughts in reality. Perhaps we are finally on the way to properly articulating what Quality of Life when living MS really means.

Qualitative evidence’ may lack the scientific rigour of, for instance, randomised controlled trials, but there is growing acceptance  that it brings a body of knowledge that not only complements other forms of evidence, it enables a greater understanding of the  decision-making processes involved in the provision of care.

Charter for MS Services
Engendering  'healthy' Quality of Life Perceptions
Erikson Creating awareness of the environmental factors that influence the development of 'healthy' perceptions of a person's world (as opposed to those that are 'sickness' based) formed a significant part of the life work of Erik Erikson.
He identified the eight attributes of 'healthy' individuals as comprising, Hope, Will, Purpose, Competence, Fidelity, Love, Caring and Wisdom. Underpinning each attribute he identified the environmental building block that fostered the development of these perceptions. These he described as Trust, Autonomy, Initiative, Industry, Identity, Creativity and Integrity (figure1 refers).
In relation to Hope he said "Hope is both the earliest and the most indispensable virtue inherent in the state of being alive.  If life is to be sustained hope must remain, even where confidence is wounded, trust impaired." It is extremely relevant that these very attributes and building blocks correspond precisely with the improved quality of life perceptions reported by many of those Australians with ongoing access to high level CCSVI screening and treatment
Engendering 'sickness related'  Quality of Life Perceptions
For each of the eight 'healthy' perceptions Erikson identified a corresponding 'sickness related' outcome resulting from 'damaging' environmental factors. These he described as Mistrust, Doubt, Guilt, Inferiority, Diffusion, Isolation, Self Absorption and Despair. It can be argued that the environment arising from the barriers currently being placed in the way of pwMS wishing to clarify their CCSVI conditions are contributing to the 'sense of helplessness' and despair frequently reported by pwMS


A Question to Answer
The Erikson model raises the question that if early building blocks are 'damaged' by a major event in life, such as an MS diagnosis, what are the processes that can help to restore that foundation? It asks about how, over time, to positively contribute to 'rebuilding‟ a persons perception of their world by working backwards through the model, i.e. by creating environments which rebuild trust (hope) leading to improved autonomy (will), providing a sense of purpose, leading to a reduced feeling of inferiority, an improved sense of identity, reduced isolation, improved creativity (a sense of fun) and a reduced sense of despair (somebody does care about me).
Fostering environments sympathetic to this process is the single greatest challenge for all organisations whose mission
 includes a desire to enhance the quality of life perceptions of pwMS. The paradigm shift in MS thinking across the globe provides a wonderful foundation from which to take up this challenge.
Figure 1 - Erik Erikson's 8 Stages of Life - A Broad Snapshot

Self - Social Attributes
How do I relate myself to the community at large?  

  Life Stage Health Sickness Self Qualities
1 1st Year Trust Mistrust Hope 
2 2nd Year Autonomy   Doubt   Will  
3 Infant   Initiative    Guilt Purpose
4 Child 6-11   Industry Inferiority Competence
Look Ma, no hands
5 Adolescence 11- 18   Identity
Who am I?   
 I don't know who I am   
The ability to commit oneself emotionally  

Adulthood 18-35

Intimacy Isolation
Feeling of being
 discriminated against

Middle Adulthood 35-60  

Self Absorption
What a lousy deal
 the world has given me  
8 Late Adulthood   Integrity Despair, Distrust   Wisdom

The 8 ego qualities are present, to varying degrees in all people. The successful development of each quality depends upon the degree of development of the immediately preceding quality.  Click here to read more about each stage of development. Erikson, in subsequent unpublished works, later came to see Wisdom as also a mid life opportunity
About Ongoing CCSVI Developments
To find out more about ongoing CCSVI developments click here

References and Acknowledgements


CCSVI, Innovation and Quality of Life
For a number of years Peter Sullivan was a judge on an Australian Government sponsored National Innovation program aimed at fostering and recognising innovation in a wide range of areas. In a discussion paper delivered in conjunction with the 14th Annual Scientific Meeting of the Australasian College of Phlebology in Melbourne, Australia, in March 2011, at which Professor Zamboni was a keynote speaker. Peter observes that 'the contribution made by Professor Zamboni in the field of MS, represents innovation of a high order – especially in Enhancing the Quality of Life Perceptions of people living with Multiple Sclerosis'. This paper explains why:
Erik Erikson
Erikson recognized the basic notions of Freudian theory, but believed that Freud misjudged some important  dimensions of human development. Erikson said that humans develop throughout their life span, while Freud  said that our personality is shaped by the age of five. Erikson developed eight psychosocial stages that humans encounter throughout their life. 
Wilfred Jarvis
The Broad Snapshot of Erik Erikson's 8 Stages of Life as illustrated above is based upon a presentation on this topic by Wilfred Jarvis (once described as Australia's most experienced behavioural scientist) when he was engaged in a major Australian organisational renewal project. The model was used to illustrate the way that Managers in organisations can significantly influence organisational cultures and climates that, in turn, impact on the health/sickness perceptions of people working in those organisations (and to the broader world's perception of the organisation itself).
Multiple sclerosis: disability profile and quality of life in an Australian community cohort.   International Journal of Rehabilitation Research. 29(2):87-96, June 2006. Khan, Fary a; McPhail, Tracey b; Brand, Caroline c; Turner-Stokes, Lynne d; Kilpatrick, Trevor e
Locus of Control  Locus of Control refers to an individual's perception of the main causes of events in life. Source:
Post Traumatic Stress Disorder following an MS Diagnosis
University of New South Wales, Australia - Chalfant AM, Bryant RA, Fulcher G. This if the first study (2004) of the impact of PTSD following MS Diagnosis.  The findings suggest  that a significant proportion of MS patients experience PTSD-type reactions.  More about Post Traumatic Stress Disorders 
Service Provision Guidelines
A good starting point in matching service delivery expectations with outcomes is for services to be delivered in ways that are consistent with the Guiding Principles for the Provision of Services to people with MS. Shortly stated these principles highlight a need for good quality service provision to encompass a full appreciation of each individual’s nursing, personal, social and spiritual care needs and expectations. The aim should be to maintain independence as far as possible and ensure that the best quality of life is achieved. Service delivery should take advantage of the expertise and specialist knowledge of professionals from a range of disciplines. A multi-disciplinary approach has consistently proven to be the most effective model of working.
A Charter for MS Services : the voice of people affected by MS'. 
The Charter for MS Services: the voice of people affected by MS, incorporating the Guiding Principles for the Provision of Services to people with MS was developed (2003) by the Multiple Sclerosis Society of Great Britain and Northern Island and  reflected in a number of subsequent studies. The Guiding Principles have broad application in all areas of service delivery to people affected by MS.  Issues include recognising personal dignity, maximising personal potential,  involvement of service users and carers in the planning and provision of services, fostering a sense of involvement, inclusion of those who might find it particularly difficult to participate, holistic approach to service provision,  support for providers wishing to improve their services, clear local standards for measuring success, The Pathways Project recognised issues such as these  as impacting on the Quality of Life perceptions of pwMS resulting in their subsequent incorporation in the Road Map Service Provision Guidelines.
  Facts Sheet RM1327MS
Road Map Reference

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