Finding quality of life despite MS: harnessing resilience.

The Observation

Those acquainted with multiple sclerosis (MS), be they a person with the disease, a loved one or a health-care practitioner (HCP), are well aware of the devastation MS can cause in a person's life. Counter-intuitively perhaps, the ability to cope emotionally, and experience quality of life (QoL), is poorly correlated (1) to the severity of disease or disability. In some cases, paradoxically, there appears to be an inverse relationship between the two variables. Similar observations have been made for the occurrences of depression and suicide. (2)

After a decade and a half, as a medical social worker in a large (>3000 patients) Canadian MS Clinic, the author has continued to ponder this observation and sought to determine if there were lessons in the literature which illuminate this conundrum and that might inform HCPs assisting persons with MS and their families to cope (3) and find QoL, despite the diagnosis and the illness.

The Context

Historically, research into coping with trauma, illness and disability has been undertaken from a medical model perspective, seeking to identify and respond to the 'problem' or 'pathology'. Attention has focused on severity of the event or the prognosis, nature of the losses and their impact on self-identity and independence, the nature and response of the individual's support networks and of particular relevance to MS, the lack of disease predictability and the pervasive threat of imminent further illness and loss.

The Concept of QoL

Suicide rates, levels of depression, psychosocial and subjective well-being are amongst the many variables adopted and translated into complex measures, in the hope of quantifying and monitoring the impact of disease morbidity and professional interventions upon the individual's QoL. Increasingly, QoL--positive psychological well-being, vitality, life satisfaction, positive affect and optimism (4) and physical health, psychological health, social relationships, and environment (5)--has been embraced as the primary goal for individuals and, therefore, a major outcome criterion for the evaluation of governments and societies. (6) Despite significant investment in QoL research, the complexity of intervening biopsychosocial variables (7) has confused the findings that practitioners had hoped would inform them on how best to enable optimal coping and QoL in persons with MS. One frequently articulated concept, however, offers some helpful insights--personal resiliency.

The Concept of Resilience

The term 'resilience' (borrowed from the natural sciences), refers to the ability' ... to recoil or spring back into shape after bending, stretching, or being compressed'. (8) Applied social scientists adopted the term to describe what was unique to individuals who could survive and overcome adversity. Longitudinal studies of large cohorts of children (9-12) began in the 1950s, hoping to identify the risk and protective factors which contributed to children's later life outcomes. The earliest studies sought to identify common characteristics of resilient children, whilst later studies focused on groups of children, identified as at risk for negative life outcomes, who overcame these challenges. (13)

Richardson's (14) seminal resiliency model paper stimulated a proliferation of related research and papers. Early resilience literature struggled with inconsistent concept terminology and definitions, yet most recognized and emphasized the concepts of competence, (15) self-efficacy, (16,17) learned optimism (18) and the ability to cope with stress. (19) Current literature evidences consensus that the core definition of resilience is' ... a dynamic process encompassing positive adaptation within the context of severe adversity'. (20)

The resilience movement found synergy with humanistic psychologists committed to Maslow's and Rogers' growth personality theories, (21) the risk reduction approach of prevention science, (22) the positive psychology movement (18) and the health and wellness movement. The philosophy has also been welcomed by holistic practitioners advocating recognition of the healing powers of less traditionally favoured approaches such as the realms of spirituality, creativity, art and music.

Resilience Research

Three waves of resilience research can be identified, each with a slightly different focus and resultant implications for interventions. The first wave identified personality and environmental characteristics that contribute to resilience and suggested interventions to enhance resilience and prevent or reduce risk. The second wave focused on resiliency processes that help individuals and families re-adjust following traumatic and or stressful events (transparently applicable to the diagnosis of MS, an exacerbation or disablement). The third wave considered innate growth and healing drives of individuals to recover and grow past trauma.

Health-Related Resilience Literature

An exploratory literature search reveals a wide variety of resilience research and opinion papers focusing on coping with disease and trauma, which can inform persons with MS and HCPs who seek to aid them in the pursuit of quality of life. Terminology and definitions vary, some factors are mutually correlated and interrelated and some cyclically reinforcing (i.e. dispositional optimism, adaptive coping and post-traumatic growth); however clustering the findings reveals practical suggestions for HCPs.

Personality and Environmental Characteristics

Dispositional Optimism and Positive Mental Attitude

Many researchers (23-40) explored the optimistic positive attitude displayed by those individuals who enjoy QoL. For some, an inherent personality type allows for a generalized expectation that good things will happen, whilst others' hopefulness for the future is linked to their belief in a future cure or symptom management. Most important was a non-catastrophic attitude where the individual maintains a sense of perspective and proportion, not wasting energy in stressing over trivia or uncontrollable events.

The HCP can provide hopeful (yet realistic) information and support at diagnosis and exacerbation-related or routine follow-ups. Prompt reassuring contact with those in crisis or distress can reduce anxiety and perseveration and gentle reality testing can be used to expose and allay unrealistic worrying. Reliable proportional responses were found to prevent catastrophic attention-seeking responses. Early cognitive behavioural therapy (CBT), mindfulness training or learned hopefulness/optimism is indicated for those pre-disposed to pessimism, anxiety and depression.

Self-Efficacy, Sense of Coherence, Self-Mastery and Internal Locus of Control

Health and social psychologists (16,25,27,28,40-46) have focused on the importance of the individual's (and significant other's) belief in their ability to cope.

Flexibility in coping responses, self-confidence and persistence when faced with a challenge can be encouraged and reinforced by the HCP. Eliciting examples of previous positive coping in other situations and suggesting the transferability of those attitudes and skills can be very powerful. For those with limited self-confidence or a less well-developed array of coping skills, supportive problem solving counselling, CBT and motivational interviewing can be effective. Engaging partners, family members and carers to encourage the person with MS to function at their optimal, and avoid learned or enforced helplessness is key.

Membership in a Faith Community

Despite increasing societal secularism or a faith crisis upon diagnosis, the literature recognizes the importance of 'faith' in providing meaning to life events, comfort and social support, especially for older individuals. (34) Persons with MS and their family can be encouraged to access pastoral care. For secular individuals, engagement in a parallel group or activity such as meditation, yoga or mindfulness training is beneficial.

Self Esteem, Purpose and Meaning in Life

The resilience literature (40,42,47,48) recognizes the importance of individuals viewing themselves as worthwhile and contributing members in relationships and society. Paramount is the importance of 'reciprocity' in relationships. MS threatens the careers, significant life roles (e.g becoming parent) and talents (e.g musical ability) by which individuals define themselves and regulate their self-esteem. As well as encouraging the person with MS (and their significant others) to continue in employment, hobbies, community and familial roles and responsibilities, the HCP can enable adaptations, challenge 'either/or' (worthwhile or disabled) thinking and suggest alternative activities and responsibilities congruent to capacity.

Social Support Networks (Family, Friends and HCPs)

Hobfoll (49) emphasizes the importance of '... social interactions or relationships that provide individuals with actual assistance or embed individuals within a social system believed to provide love, caring or sense of attachment to a valued social group or dyad'. Corey et al, (50) Devereux et al, (47) Kanner et al51 and Kralik et al (42) agree, and although responses from the most important person in the subject's social network are key, impatience and insensitivity from others can lead to sense of self as a social hindrance.

A patient and supportive health and social care team is indicated. Whilst encouraging continuance of engagement in pre-existing social networks and relationships, the HCP can encourage engagement with other social suitable networks (possibly MS related).

Importantly, the HCP needs to remain sensitive to the strain on long-term carers to prevent primary relationships deteriorating into emotionally inequitable 'caring only'. Emotional support to carers should be combined with encouraging and enabling ongoing and respite care, and carers' networks to reduce isolation, resentment and guilt.

Positive Role Models

The resilience literature recommends exposure to role models, who in similar circumstances, demonstrate positive coping and optimism. (43) The HCP can facilitate positive role modelling through a newly diagnosed or persons with MS support group, Internet virtual communities/discussion groups and 'ask an expert' opportunities.

Resiliency Processes

Adaptive, Active or Emotion-Focused Coping and the Illness Recovery Model

Resilient individuals cope and gain control over challenges by proactively accessing personal and environmental resources, realistically accepting limitations and investing energy only in matters that can be controlled or influenced. (23,28,42,52-55) HCPs can enable realistic adaptations/changes to employment or life roles, so the person with MS continues to have sense of mastery and value. Cognitive behavioural therapy can help reduce either/or (worthwhile or disabled) definitions of self.

Determination, Perseverance

Yi et al (40) recommends any type of support or motivational counselling that provides the person with MS with encouragement to persevere.

Seeking Social Support

Resilient individuals are successful at drawing on their existing social support and affectional bonds (25,34,42,56) and have experienced positive responses to emotional self-disclosure. This suggests that the HCP needs to provide emotional support and advice to existing social networks (friends, family) to meet the needs of the person with MS, as well as encouraging him or her to engage with new suitable social networks.

Maintaining Independence

Retaining maximal independence is a hallmark of resilience, (44,45,54) and HCPs can enable adaptations/changes that allow the person with MS safe independence. Cognitive behavioural therapy can be helpful for individuals who are reluctant to maximize their independence for whatever reason (i.e. anxiety, disabled mindset).

Drive for Growth and Healing

Post-Traumatic Growth, Meaning Making, Benefit Finding, Turning Points and Transcendence

Finally, a small proportion of individuals report an increase in their emotional QoL after traumatic events and loss. In attempting to regain a sense of cognitive control, they have come to terms with what has happened, considered the impact and significance for the future and developed personal functioning and well-being that exceeds pre-trauma levels. For these people, coping with long-term illness provides the impetus for personal transformation beyond adaptation to illness. They report increased appreciation for life, meaningful interpersonal relationships, increased sense of personal strength and changed priorities.

To help persons with MS free up the energy for this transformation, the HCP can provide supportive counselling to aid individuals in clarifying their goals and values in life, thereby triggering self-understanding of a profound nature, which can lead to new intense lines of activity, new friends and new hobbies or career.

Spirituality

Prati and Pietrantoni (34) and Tedeschi and Calhoun (57) have noted that resilient individuals can exceed their pre-illness QoL by engaging in a richer existential and spiritual life, which offers philosophical and spiritual guidance, thereby decreasing ontological insecurity.

Illness Recovery Model and Restoration of Well-being

As discussed by Morse and Johnson, (54) the advent of illness or disability can result in the individual attaining a new equilibrium through acceptance of illness and its consequences; however, the HCP will likely need to provide adjustment counselling and psychosocial support to enhance the process.

Revising a priori World Views

For the individual whose life has irreparably changed, new understandings and revisions of self and the world are possible and advantageous. (23,42,58) The HCP can support the person with MS in seeking new self-definitions, encouraging them to consider a sense of self, and meaning in roles and activities that do not rely on lost attributes and abilities.

Conclusion

Karoly and Ruehlman (28) argue that '... resilience [is] linked cognitively, emotionally, socially, and behaviourally to a set of higher-order self-regulatory (executive) skills that allow persons ... to navigate towards their goals in a hopeful, positive and efficacious manner.'

This consideration of health-related literature from the resilience perspective reveals a wealth of observations and findings (personality and environmental characteristics, resiliency processes and drive for growth and healing) which can aid the HCP in understanding and enabling persons with MS to harness that resilience, in order to achieve optimal QoL, despite the disease.

Key Points

* The ability to cope emotionally, and experience quality of life, is poorly correlated to the severity of disease or disability.

* Engaging partners, family members and carers to encourage persons with MS to function at their optimal, and avoid learned or enforced helplessness is key.

* Emotional support to carers should be combined with encouraging and enabling ongoing and respite care, and carers' networks to reduce isolation, resentment and guilt.

Conflicts of Interest

No conflicts of interest were declared in relation to this article.

Received: 1 March 2010

Accepted: 19 July 2010

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SA Vitali

Oxford Brookes University, Oxford, UK

Address for Correspondence

Sharon A Vitali

Faculty of Health and Life Sciences

Oxford Brookes University

Jack Straw's Lane

Oxford OX3 0FL

UK

Tel: [phone]

E-mail: [e-mail]