Presented by Aimee Anderson MSW RSW AAMAC education day Ottawa ON October 13 2018 Goals for the Presentation To define chronic illness in the context of quality of life To learn about the ID: 915412
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Slide1
Coping with Chronic Illness
Presented by : Aimee Anderson MSW RSW
AAMAC education day - Ottawa, ON
October 13, 2018
Slide2Goals 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.
Slide3Quality of life and
Chronic Illness
This Photo
by Unknown Author is licensed under
CC BY-SA-NC
Slide4What 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
.
Slide5Health 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
.
Slide6The Impact of Illness on the Patient and the Caregiver
Slide7Chronic Illness and the person with the diagnosis
From: https://www.cancer.net/coping-with-cancer/managing-emotions/coping-with-uncertainty
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)
Slide8Coping with Illness
“It is one’s feelings and beliefs
regarding illness and treatment that determineone’s ability to cope
with the challenges they meet.”
(Choen and Biesecker, 2010 in von der Lippe et al., 2017, 766).
Slide9Chronic 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).
Slide10Aboriginal status gender
disability housing early life income and income distribution education race employment working conditions
Social Determinants of Health
social exclusion
food insecurity
social safety net
health services
unemployment
job security
Raphael, D. (2009)
Slide11The 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
Finding
Slide12High 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).
12
meaningfulness
Slide13Meaning Making
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.
Talk with a counselor or social worker at the hospital.
Find a support person, support group or communities online.
Slide14Meaning 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, 2005 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).
….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
Slide15Being Practical
Slide16Seek out and Ask for Support
Formal Supports
Informal supports
Slide17Slide18Practice:
Mindfulness Based Stress Reduction MBSR
https://themindfulnesssummit.com/sessions/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
Slide19Practice:
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)
https://www.lionsroar.com/5-reasons-to-meditate-september-2013/
Slide20APPS
Insight Timer
Headspace
Slide21AAMAChttp://www.aamac.ca/e/http://www.aamac.ca/e/a_34main.cfm
resources
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Slide22Discussion
This Photo
by Unknown Author is licensed under
CC BY-SA-NC
Slide23Baanders, A. N. and M. J. W. Heijmans (2007). "The impact of chronic diseases: the partner's perspective
." Family & Community Health 30(4): 305-317.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): 539-544.de Ridder, D., et al. (2008). "Psychological adjustment to chronic disease
."
Lancet
372(9634): 246-255.
Duggleby, W., et al. (2012). "
Hope, older adults, and chronic illness: a metasynthesis of qualitative research
."
Journal of Advanced Nursing
68(6): 1211-1223.
Helgeson, V. S. and M. Zajdel (2017). "
Adjusting to Chronic Health Conditions
."
Annual Review of Psychology
68: 545-571.
Megari, K. (2013).
"Quality of Life in Chronic Disease Patients
."
Health Psychology Research
1(3): e27.
Bibliography
Slide24Raphael, 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): 758-773.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):863-75.
Bibliography cont.
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