Finding benefit in stressful uncertain circumstances (McInnis et al., 2015)

[Dolphin]

Finding benefit in stressful uncertain circumstances: relations to social support and stigma among women with unexplained illnesses.

Stress. 2015;18(2):169-77. doi: 10.3109/10253890.2014.1001975. Epub 2015 Jan 23.

McInnis OA1, McQuaid RJ, Bombay A, Matheson K, Anisman H.
Author information

Abstract

Living with a chronic illness can be challenging, but the ability to derive benefits and grow from this experience may enhance well-being.

However, the possibility of obtaining such benefits may be dependent on the levels of stigmatization and lack of social support experienced by an individual as a result of the illness.

Chronic fatigue syndrome (CFS) and fibromyalgia are chronic conditions that remain largely unexplained and those with these conditions must often contend with stigma and skepticism from others.

Individuals with CFS/fibromyalgia often display stress-related biological alterations and the experience of stressful life events has been associated with illness development.

The present study demonstrated that women with CFS/fibromyalgia (n = 40) as well as community participants who were depressed/anxious (n = 37), reported higher stigma levels than healthy women (n = 33).

Moreover, women with CFS/fibromyalgia and those with depression/anxiety also reported greater levels of stigma than women with a chronic yet more widely accepted condition (n = 35; rheumatoid arthritis, osteoarthritis and multiple sclerosis).

Secrecy related to stigma among those with CFS/fibromyalgia declined with increased social support, but this was not apparent among those with other chronic conditions.

In addition, posttraumatic growth was lower among women with CFS/fibromyalgia compared to those with other chronic conditions.

Qualitative analysis examining both negative impacts and positive changes stemming from illness experience revealed many similarities between women with CFS/fibromyalgia and those with other chronic conditions, including elevated appreciation for life, personal growth and compassion for others.

However, women with CFS/fibromyalgia tended to report less positive change regarding interpersonal relationships compared to women with other chronic conditions.

In general, unexplained illnesses were also accompanied by stigmatization which might ultimately contribute to women's lower ability to derive positive growth from their illness experience.

KEYWORDS:
Chronic illness; chronic fatigue syndrome; fibromyalgia; negative social interactions; posttraumatic growth; social connections

PMID:

25544022

DOI:

10.3109/10253890.2014.1001975
[Indexed for MEDLINE]

 

[Dolphin]

Table 2
Percentage Frequencies of Coded Positive and Negative Impacts Among Women With CFS/Fibromyalgia and Other Chronic Illnesses.

No Positive Impact

CFS/Fibromyalgia (n = 40): 35.0%

Other Chronic Illnesses (n =34 ): 31.4%

Finally, when prompted to report how their illness may have had a positive impact on their lives several women from both groups were unable to derive any positive meaning from living with their conditions. (e.g., “This is where I am supposed to say all the benefits I have learned from going through a negative experience. Maybe other people. Not me.” -CFS & Fibromyalgia, Table 2).

 

[Dolphin]

Of these women, some displayed fibromyalgia (n = 28), CFS (n = 5), or both (n = 7).

 

[Dolphin]

In particular, 32 of 40 women in the CFS/fibromyalgia group reported having a depressive disorder (n = 18), anxiety disorder (n = 3), anxiety and depressive disorder (n = 8) or other mental health disorders (n = 3).

 

[Dolphin]

Women in the various health groups (CFS/fibromyalgia, other chronic illnesses, and mental health conditions) were recruited from support centers and online support forums across Canada in cooperation with support group facilitators and forum administrators. Recruitment postings were limited to support centers and online forums specific to the various health conditions (e.g., those for individuals with CFS and fibromyalgia, arthritis, depression etc.).

 

[Diwi9]

I'm curious how they are defining/measuring "posttraumatic growth."

 

[halcyon]

Qualitative analysis examining both negative impacts and positive changes stemming from illness experience revealed many similarities between women with CFS/fibromyalgia and those with other chronic conditions, including elevated appreciation for life, personal growth and compassion for others.

Now weigh that against this and ask yourself is it worth it? No, it's not.

 

[Dolphin]

Social Support

Perceived social support was assessed using the Social Provisions Scale (Cutrona & Russell, 1987). This 24-item scale asks respondents to rate the degree to which their social relationships are currently providing them with different forms of support including, guidance, reassurance of worth, reliable alliance, social integration, opportunity to provide nurturance, and attachment. Total mean social support scores were used for analyses (Cronbach’s α = 0.89).

See:
http://www.ucp.pt/site/resources/documents/ICS/GNC/ArtigosGNC/AlexandreCastroCaldas/26_CuRu87.pdf

 

[Dolphin]

Stigma

Perceived stigma was assessed using a modified version of the Pain Stigma Scale (Lennon e al., 1989). Specifically, the scale was modified to address each of the illnesses of interest in the present investigation (i.e., CFS, fibromyalgia, osteoarthritis, rheumatoid arthritis, multiple sclerosis, depression and anxiety). Thus, any analyses involving this measure excluded participants who were in the healthy control group. This 22-item scale assesses the degree to which participants believe others may think and act differently towards them due to their illness, and the consequences this could have on them. The scale is divided into four separate aspects of stigma including, attribution (e.g., “Many people assume that having [name of illness] is a sign of personal weakness”, Cronbach’s α = 0.87), estrangement (e.g., “One problem with having [name of illness] is that people don't believe that you really hurt.”, Cronbach’s α = 0.92), secrecy (e.g., “I've learned that it is best to keep the fact that I have [name of illness] to myself”, Cronbach’s α = 0.79) and disclosure (e.g., “I feel it is my duty to help educate the public about problems involving [name of illness]”, Cronbach’s α = 0.90).

Some Qs:
Page 593
https://www.academia.edu/5986714/Lo..._as_perceived_by_chronic_facial_pain_patients

 

[Dolphin]

I'm curious how they are defining/measuring "posttraumatic growth."

Posttraumatic Growth Inventory

The Posttraumatic Growth Inventory (Tedeschi & Calhoun, 1995, 1996) was used to assess positive changes experienced by women from living with their illness. This 21-item scale measures five dimensions of posttraumatic growth, including personal strength, new possibilities, appreciation of life, spiritual change and relating to others. Respondents rated the degree to which they had experienced a change on a six point Likert scale, ranging from zero (I did not experience this change as a result of my crisis) to five (I experienced this change to a very great degree as a result of my crisis). For each health condition the response options were modified to refer to the respective condition, and thus any analyses involving this measure excluded those who were in the healthy control group. Total posttraumatic growth scores were used for analyses (Cronbach’s α = 0.95).

Qs:
http://www.emdrhap.org/content/wp-content/uploads/2014/07/VIII-B_Post-Traumatic-Growth-Inventory.pdf

Also qualitative analysis

 

[Dolphin]

Perceived Growth and Meaning: Qualitative Analysis

Reports of negative and positive changes as a result of living with the illness were assessed using questions developed by Davis and Morgan (2008), in which participants were specifically asked the extent to which their illness had a negative as well as a positive effect on their life goals and on their philosophy of life.

 

[Woolie]

The topic of how others' perceptions affect our well-being is very important. But this study seems to have been quite badly done. None of the differences they hoped for seem to have come out significant, but they have still done the old classic of talking up what they did find and trying to make it fit their hypotheses.

And what's this bullshit?

Individuals with CFS/fibromyalgia often display stress-related biological alterations and the experience of stressful life events has been associated with illness development.

 

[Woolie]

Wow, the journal is called Stress. Now, stress is a loose and free concept at the best of times - its anything you want it to be to fit your current argument. Physical endurance, pain, hunger, infection, feeling overworked, feeling underutilised, feeling overwhelmed by choices, feeling short of options, awful loved ones, no loved ones, dead loved ones, new relationships, they all seem to be the same thing in articles on stress. Hence this literature's amazing ability to extrapolate about the impact of grief on a person's health, based on a study of a tired rat that's just swum a marathon in a water maze.

I guess that means you can submit anything you want to to this journal, you can always find a way to make it fit.

Thank you, PR, for letting me have that rant. I feel much better now.

 

[Snow Leopard]

Thank you, PR, for letting me have that rant. I feel much better now.

I was going to make the same rant but I didn't have the energy. Thanks for doing it for me.

 

[Jenny TipsforME]

I haven't read this study, but I think the concept of post traumatic growth aspect from chronic illness can be useful. Chronic illness definitely isn't worth it, and I have no time for the concept of secondary gain. However this idea is a bit different. It isn't a social gain from being ill, it's a learning through experience. The wisdom gained from really challenging circumstances.

For example I have sometimes scribbled in the margins of the CFS/ SF36 questionnaires because they assume only depression as an outcome, it is skewed to pick up depression. You enjoy things less, or it has no affect. This isn't my experience. I'm not depressed and when I can do things I appreciate it much more than when I was well. You stop taking things for granted. A good TV storyline or watching birds in the garden can make me happy.

as an undergraduate I devised a Menstrual Experience Questionnaire. This recorded positive experience as well as negative, to do with periods. Other questionnaires measured only the negative. My assumption was that it would be negative but I didn't want the questionnaire to be biased. Surprisingly a couple of women had a more positive experience around their period than other days!

 

[Dolphin]

The follow-up comparisons indicated that stigma attribution was higher among women with CFS/fibromyalgia than in women with other chronic conditions, and women with a mental health condition reported significantly higher levels than those in the other chronic conditions group. It also appeared that perceived stigma estrangement was higher among women with CFS/fibromyalgia than among women in the other chronic illness group and women with a mental health condition. Additionally, women with CFS/fibromyalgia reported levels of stigma secrecy comparable to that of women with other chronic illnesses, whereas those with a mental health condition reported greater secrecy than both of these groups (Figure 2).

 

[Dolphin]

This revealed that women with CFS/fibromyalgia displayed lower levels of perceived stigma at high levels of social support, but this relationship was not observed among women with other chronic illnesses.

 

[Dolphin]

Specifically, follow-up analyses revealed that the level of posttraumatic growth was lower among women with CFS/fibromyalgia (M = 2.39 ± 0.20) relative to that of other chronic illnesses (M = 3.30 ± 0.21), whereas levels of posttraumatic growth among women with other chronic illnesses did not significantly differ from women with a mental health disorder (M = 2.75 ± 0.21).

 

[Dolphin]

Women in the CFS/fibromyalgia group recalled a great sense of accomplishment prior to their condition and indicated in what ways CFS/fibromyalgia had negatively affected their goals and achievements (55.0%; e.g., “I was an elite athlete and I had to give up my dreams of succeeding in that area of my life because my body doesn't react like a normal person's body does to exercise”- Fibromyalgia). Women with other chronic illnesses likewise reported a sense of accomplishment prior to becoming ill and how this had negatively influenced these goals, although this was somewhat less frequently reported than in those with CFS/fibromyalgia (31.4%), χ2(1) = 3.45, p = .06.

 

[Dolphin]

However, they not only reported the curtailment of these aspirations, but also how their prior accomplishments, which had been part of their identity, had been taken away as a result of becoming ill (e.g., “My business clothes gather dust now, my makeup has long since dried up, and my jewelry sits in the drawers untouched. Whenever I see a smart business woman…it breaks my heart and I think "that used to be me". That "me" was stolen from me. I had no choice in the matter.”-CFS & Fibromyalgia).