AN EXPLORATION OF DIFFERENT COPING STRATEGIES EMPLOYED IN THE MANAGEMENT

OF POST POLIO SYNDROME (PPS)

Anne-Marie C Quincey, Samantha M-S Wong, Professor C Thomas & Professor Carolyn A Young

(Walton Centre for Neurology and Neurosurgery NHS Foundation Trust, Liverpool)

The UK Post Polio Study Group

There were no conflicts of interest

Post-Polio Fatigue

Very common complaint (Vasconcelos et al, 2006)

Most troubling and debilitating symptom of PPS (Nollet et al, 1999; Olsen et al, 2007)

Higher levels of fatigue in PPS cf healthy controls (Packer, Martins, Krefting & Brouwer, 1991; Packer, Sauriol & Brouwer, 1994)

PPS patients with fatigue experience lower QoL cf healthy controls (On, Oncu, Atamaz, & Durmaz, 2006)

Impact of PPS

New loss of function and new phase of disability Re-emergence of disease thought to be defeated Often additional difficulty in coping with day to day

life including occupations, leisure/ social activities (Farbu et al, 2006; Nollet et al, 1999)

Possible increased need for care and assistance (Grimby & Thorén-Jönsson, 1994; Kling, Persson & Gardulf, 2000)

Can result in decrease in life satisfaction (Farbu et al, 2006)

Research aims

Qualitatively explore the views of individuals with PPS

To identify PPS specific themes/items for developing quantitative measures for PPS

Method

Interviewed face to face and via telephone

Semi-structured

Prompts used as guide

Typically lasted 45 minutes

Interviews recorded, transcribed, and analysed thematically

Transcripts coded systematically and independently

Statements identified and then themes were agreed which items related to

Participants

Volunteers satisfied diagnostic criteria for PPS

23 females and 22 males

5 receiving NIV

Located in geographical regions all over the UK

Table 1: Characteristics of sample interviewed

Males Diagnosis of PPS

≤ 1 year > 1 year

Polio- Onset of PPS fatigue

15-45 years 3 (7%) 6 (13%)

> 45 years 4 (9%) 9 (20)%

Females Diagnosis of PPS

≤ 1 year > 1 year

Polio- Onset of PPS fatigue

15-45 years 5 (11%) 6 (13%)

> 45 years 5 (11%) 7 (16%)

Coping strategies

Respondents talked about attempts to maximise control and autonomy in the face of PPS

Coping strategies reported as essential given impact PPS can have

Unpredictable manifestations and progression of PPS

Findings

45 interviews conducted

Continued interviewing until saturation was achieved

Participants could generally be categorised as adopting sedentary-focused or active-focused coping strategies for fatigue

In this study, more participants appeared to adopt sedentary-focused coping

Pictorial Representation

Sedentary focused coping styles

Active focused

coping styles

Table 2: Differing coping styles utilised

Sedentary- focused coping Active- focused coping

Avoid excess activity Physical exercise regimes

Tendency to rest, pace & adapt environment

Tendency to overexert

“Conserve it or lose it” beliefs

“Use it or lose it” beliefs

More likely to accept help Less likely to accept help

Active-focused coping style Adopted exercise regimes but described benefit as a

sense of achievement rather than symptom improvement

Typical saying taught during rehabilitation of polio at childhood was ‘use it or lose it’ (Kaufert & Locker, 1990)

Opposite to what is recommended for PPS management-conserve energy and limit overactivity

Similarly, upbringing e.g. treatment from parents, affected personality and attitudes towards activity

Children growing up with physical disabilities often built-up strong personalities, resilience, led an active life and are used to giving their very best to be “normal” (Yelnik & Laffont, 2009)

Quotes to exemplify

Sense of achievement after exercising:

“I feel as though I have accomplished something and I feel better in myself for it” (Thomas, aged 59)

Tendency to keep active:

“you tend to cope better rather when you’re doing nothing and sit on the settee”(William, aged 68)

Influence of upbringing:“I have to say that your parents are the ones that really set you up. Because my mother never ever told me I was disabled. She never ever accepted that I couldn’t do things, and I had to behave and do exactly the same as my sister” (Karen, aged 67)

Resilient personality:“The fact is when you’ve had polio from an early age, you grow up with this feeling that you have to push yourself, and be as independent as possible. People that are around me, they are completely unaware that I feel tired to the extent I do, or limited to the extent I do - because I don’t discuss it with them” (Marion, aged 58)

Sedentary-focused coping style

Adapted to condition more and changed some of their attitudes e.g. talked about accepting their condition, more likely to rest and pace effectively, more likely to have adapted surroundings to make life easier and comfortable in seeking or accepting help from others

See condition as more controllable if pacing was carried out effectively, but acknowledged the condition likely to get worse over the years

Tend to avoid excess activity by “knowing the limits their own bodies” and hence experienced fewer “fatigue and pain symptoms” from activity

Quotes to exemplify

Pacing through activities:“What I do now is try to do a little each day, rather than

trying to get it all done at once” (Kevin, aged 52) Advanced planning involving prophylactic rest:

“If I know I’m going to have to do something, then I have to make sure a couple of days before I do absolutely nothing, and try and build up some energy if I can” (Doris, aged 63)

Relaxation and using assistive devices:“If you know you have something big on some day… *I’ll+ have a little rest for half an hour to an hour, and I’ve also got a ventilator that I use through the night every night. It’s on all night, and it gives me a boost to help me in the morning… I can take a few breaths of air and it sort of stretches my lungs a little bit” (Margaret, aged 74)

Acknowledging condition likely to deteriorate:

“I can’t see it carrying on and this is the way it’s going to be, because as I say the way I feel is just all gradually worse” (Derek, aged 54)

Improvising, i.e. altering or adapting an activity/task to make it more manageable:

“I’ve tried to improvise, I want to carry on doing it -but I’m trying to improvise to reduce the amount of pulling I do you know” (Edward, aged 68)

Accepting support from friends and family: “My friends are understanding too, I mean they know my limits” (Emily, aged 64)

Coping strategies could also be learnt from others in a similar situation, especially through membership of the British Polio Fellowship; and positive attitudes could arise from sharing experiences and socialising: “We know quite a few people with Polio (from BPF)

we socialise with them.. we have days out and things like that, you know, and it’s something to look forward to” (Derek, aged 54)

Stoicism

Benefit of an accepting mindset and stoicism in the face of misfortune found to help some participants to stay positive:

“I think it’s just what’s mapped out for me, so I’ll have to get on with it, you know” (Edward, ages 68)

“Whatever life throws at you, you just battle forward” (Joan, aged 67)

Limitations

How representative is our sample? PPS patients may have responded differently

depending on whether they were interviewed by telephone or face-to-face: strengths and weaknesses of each method

Conclusion

Condition had a profound impact on interviewee’s lives

Coping strategies therefore often employed Two different models for coping with PPS emerged,

which had both positive and negative impacts on activity, self confidence, independence and fatigue

Further work may help healthcare providers to target particular beliefs or expectations that may influence an individual’s coping capacity in PPS

Items were derived from these interviews to comprise a PPS specific self report measure and this is currently being validated in a PPS population

Acknowledgements

Many thanks to Professor Carolyn A. Young and Samantha Wong (Walton Centre for Neurology and Neurosurgery, Liverpool, UK) for their time, efforts and valuable contributions to this project.

We are also extremely grateful to the British Polio Fellowship (BPF) for their generous funding of this research, enabling us to conduct the project.

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