1. Coping with Chronic Illness
Presented by : Aimee Anderson MSW RSW
AAMAC education day - Ottawa, ON
October 13, 2018

2. Goals for the Presentation
To define chronic illness in the context of quality of life.
To learn about the impacts of illness on the identified patient and the caregiver.
To learn strategies to cope with illness.
To review available resources to maintain emotional health.
Goals for the Presentation

3. Quality of life and Chronic Illness
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4. What is Chronic Illness?
“…disorders that persist for an extended period and affect a person’s ability to function normally.” (deRidder et al., 2008, 246).
A chronic illness has the potential to create major change in a person’s life.
Sometimes this can result in a negative effect on quality of life and wellbeing.
What is Chronic Illness?

5. Health Related Quality of Life (HRQoL)
Quality of Life is…
“…an individual’s perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns (World Health Organization as stated in Megari, 2013, 141).”
QOL…It is not just the absence of disease.
It is the inclusion of social, physical and psychological well-being and positive health alongside self-rated health status (WHO, 1954 in Megari, 142)
QOL focuses on the person as a WHOLE.
Health Related Quality of Life (HRQoL)
A person’s psychosocial well being is compromised by 1. reducing positively reinforcing outcomes of participating in valued activities and 2. feelings of personal control and by limiting the ability to obtain positive outcomes or negative ones. (Devins et al., 1983 in Megari, 2013, 142).

6. The Impact of Illness on the Patient and the Caregiver

7. Living with a chronic illness is difficult and poses challenges
Feelings of uncertainty
Recurrence – the what ifs?
Putting life on hold. Dependency on treatment
Learning to manage the uncertainty is an important part of staying healthy.
Psychological distress
Feelings of depression / sadness / fear / ?s about treatment
Physical limitations
Dependency on others / feeling of burden (von der Lippe et al., 2017, 761)
Chronic Illness and the person with the diagnosis From:

8. Coping with Illness “It is one’s feelings and beliefs
regarding illness and treatment that determine
one’s ability to cope
with the challenges they meet.”
(Choen and Biesecker, 2010 in von der Lippe et al., 2017, 766).
Coping with Illness

9. Chronic Illness and the caregiver
Chronic illness affects all aspects of the life of a healthy partner (Baanders et al., 2007, 305).
…The unpredictability of the patient’s condition / the anticipation of possibly bad days may force partners to set aside their own needs, reorganize their lives in advance, or it may hinder personal achievements (Baanders et al., 306).
Impacts vary based on one’s Social Determinants of Health (slide 7).
Chronic Illness and the caregiver

10. Social Determinants of Health
Aboriginal status
gender
disability
housing
early life income and income distribution
education race employment
working conditions
social exclusion
food insecurity
social safety net
health services
unemployment
job security
Raphael, D. (2009)

11. Finding
The occurrence of disease often challenges an individuals’ beliefs and hopes (Holland & Reznik, 2005).
Re-evaluating hope in light of a chronic illness – a loss of old hopes / the creation of new hopes emerging (Flemming, 1997 et al., in Duggleby, 2018).
Finding meaning and purpose in life is an important process of hope (Snyder, 2000 as stated in Duggleby et al., 1212).
Hope is an important psychological resource that can be seen as “essential to life” (Elliot and Oliver, 2009 as stated in Duggleby et al., 2011, 1212).
Meaning and purpose can be internally / externally located – Values and Priorities
Characteristics of hope
Hope is future focused.
Redefining the future
Hope increases, decreases, and disappears as situations change (Elliot and Oliver 2009 as stated in Duggleby, 2012, 1217).
Coexisting hopes exist – comfort and peace, hope for families, hope for cure (Dufault et al as stated in Dubbleby, 2012, 1217).
Looking for meaning in life internally and externally
What are your values? What are the priorities? (Duggleby, 2012, 1217)

12. meaningfulness
High levels of perceived life meaning have been linked to numerous aspects of adjustment in survivorship, including better health-related quality of life (e.g., Brady, Peterman, Fitchett, Mo, & Cella, 1999) and psychological adjustment (Laubmeier, Zakowski, & Bair, 2004; McClain, Rosenfeld, & Breitbart, 2003).

13. Meaning making is …believed to be important in a person’s psychological adjustment through the disease experience (Lepore, 2001; Moadel et al., 1999).
…efforts to understand a stressor and to incorporate that understanding into one’s global meaning system (Park & Folkman, 1997).
i.e. individuals typically believe that their lives are predictable, ordered, and meaningful (Epstein, 1991; Janoff-Bulman, 1989) and that the world is coherent and fair or just (Davis & Nolen-Hoeksema, 2001; Lerner, 1980).
These ideas are challenged in light of new diagnosis / crisis.
Meaning Making
Talk with a counselor or social worker at the hospital.
Find a support person, support group or communities online.

14. Meaning Making continued
Sometimes chronic illness can be a vehicle for personal growth:
(a) it challenges our perceptions of life change / posttraumatic growth,
(b) it provides a deepened sense of meaning in life, and
(c) It may restore core beliefs such as a just world (Bower et al., 2005; Brennan, 2001; Holland & Reznik, as stated in Parks et al., 2008, 864).
Core Beliefs may include:
Dependability.Reliability.Loyalty.Commitment.
Open-mindedness.Consistency.Honesty.Efficiency
Improved relationships, increased self-confidence and coping skills, and higher levels of spirituality and appreciation for life (Stanton et al., 2006; Tomich & Helgeson, 2004).
Meaning Making continued
….God / affiliation with a religious/spiritual institution.
…being a good steward of resources and in exercising frugality
…family is of fundamental importance
…maintaining a healthy work/life balance

15. Being Practical

16. Seek out and Ask for Support
Formal Supports
Informal supports

18. Practice: Mindfulness Based Stress Reduction MBSR
ns/9-powerful-meditation-tips-jon-kabat- zinn/
John Kabat-Zinn (1982)
“a treatment for psychological distress, depressive symptoms and anxiety for people with chronic disease.” Bohlmeijer et al, 2009, 539).
Non-judgementally observe emotions, sensations, or cognitions.
Moment-to-moment awareness

19. Practice: Meditation Pema Chodrun
“Meditation gives us the opportunity to have an open, compassionate attentiveness to whatever is going on. The meditative space is like the big sky— spacious, vast enough to accommodate anything that arises.” (Chodrun, 2018)
meditate-september-2013/

20. APPS
Insight Timer
Headspace

21. resources AAMAC http://www.aamac.ca/e/

22. Discussion
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23. Bibliography
Baanders, A. N. and M. J. W. Heijmans (2007). "The impact of chronic diseases: the partner's perspective." Family & Community Health 30(4):
Bohlmeijer, E., et al. (2010). "The effects of mindfulness-based stress reduction therapy on mental health of adults with a chronic medical disease: a meta-analysis." Journal of Psychosomatic Research 68(6):
de Ridder, D., et al. (2008). "Psychological adjustment to chronic disease." Lancet 372(9634):
Duggleby, W., et al. (2012). "Hope, older adults, and chronic illness: a metasynthesis of qualitative research." Journal of Advanced Nursing 68(6):
Helgeson, V. S. and M. Zajdel (2017). "Adjusting to Chronic Health Conditions." Annual Review of Psychology 68:
Megari, K. (2013). "Quality of Life in Chronic Disease Patients." Health Psychology Research 1(3): e27.

24. Bibliography cont.
Raphael, D. (2009). Social Determinants of Health: Canadian Perspectives, 2nd edition. Toronto: Canadian Scholars’ Press.
von der Lippe, C., et al. (2017). "Living with a rare disorder: a systematic review of the qualitative literature." Molecular Genetics & Genomic Medicine 5(6):
Park, CL., Edmondson, D., Fenster, JR. and Blank, TO. (2008). “Meaning making and psychological adjustment following cancer: the mediating roles of growth, life meaning, and restored just-world beliefs.” J. Consult Clinical Psychology. 76(5):