Community Coping Interventions after Stroke Study:

A cohort study using participatory action survey research

Primary Investigator: Julie Schwertfeger, PhD, DPT, MBA

A survey measuring stress was completed by participants who attended one of fourteen of the 2019 stroke camps (there were 30 camps held in 2019).  Participants completed surveys at four timepoints, two prior to attending camp, and two after attending camp.  The study results are summarized below.  

A big thank you to Marylee, RRSC, Michelle Rolando, and all the campers who participated in this study.  I learned so much from all of you, and the data helped my finish my PhD in Interprofessional Healthcare Studies.

Terms and indicators important to this research study: 

Stroke is a leading cause of disability in the US¹. Prevalence will double between 2010 and 2030.² 

Healthcare is responsive to crises, and not designed for preventive services.  It is especially not well designed for prevention and wellness for people who have impairments from stroke and their caregivers.^2,3

Coping skill training improves quality of life, healthcare utilization, mood, and physical functioning for the people living after stroke and their caregiver. Despite the evidence, most people do not receive adequate coping training.^4-8

Knowledge Gap: 

There is a lack of coping intervention efficacy studies that include people with stroke, with aphasias, and with caregivers.^9,10

The chronic disease self-management program (CDSMP) is an evidence-based model that teaches coping skills for self-management of chronic conditions,11 and it focuses on a number of conceptual domains to do this: Problem solving, resource utilization, decision making, action planning, self-tailoring, patient-provider relationship. The CDSMP has not been studied in people with aphasia, which accounts for >30% of people with stroke.^9,12

Patient engagement improves health behaviors.^13,14

Stroke Camp uses a weekend camp model only found in one small pilot study for adult chronic stroke survivors.¹⁵ Though stroke camp does not market itself as a CDSMP, camp documents and a research study on the beneficial effects of stroke camp on caregiver camp attendees¹⁶ indicate it may fit the description of a novel CDSMP.  The novelty of stroke camp along with its track record over a decade of sustainability warrant study. 

Research Participants: 

Data was collected on 40 survivors and 24 caregivers who attended one of 14 stroke camps (there were 30 stroke camps held in 2019 in total) during the 2019 season.   

Characteristics of the survivors who participated in the research were similar camp records of survivor camp registrants. Characteristics of the caregivers who were in the research were similar to camp records of caregiver campers.

Both the survivor participants and the caregiver participants reported survivor levels of impairment ranging from no significant disability to severe disability requiring assistance with mobility and self-care. The number of research participants reporting aphasia was similar to the overall camper rate and national statistics.

There were three research study hypotheses:

Hypothesis 1 Attending Stroke Camp will decrease stress

Hypothesis 2 Camp addresses one or more of the CDSMP domains (Problem solving, resource utilization, decision making, action planning, self-tailoring, patient-provider relationship)

Hypothesis 3 Camp uses a consistent set of activities across sites.

Participant recruitment: This research study recruited people from nearly half of the stroke camps held in 2019 who completed survey measures of stress at four time points, two times before and two times after camp.  Aphasia friendly consent and survey materials and methods were offered sand used when needed.

Data Analysis was completed using longitudinal mixed modeling with random intercept, and attributes that could not be controlled for were assessed for potential influence on the outcome of stress over time in participants. In survivors, attributes that influenced stress over time included Gender, Years Since Stroke, and Level of impairment. When these traits were controlled for in the statistical model, model fit improved.  In the caregivers, attributes that influenced stress over time included Years Since Stroke, and the model fit improved when years since stroke was controlled for in the statistical analysis. 

Research Results: H1 (Attending Stroke Camp will decrease stress) was supported for survivors only at one-month post camp and the camp effect was large at one-month post.

H1 was supported in Caregivers immediately after camp with a mod-large effect size, and at one-month later with a very large effect size. 

H2 (Camp addresses one or more CDSMP domain) was supported in both the survivor and the caregiver participants. There was evidence of each of the six CDSMP domains in stroke camp model based on a review of camp documents and participant free-text reports of what they remembered as meaningful about camp.

H3 (Camp uses a consistent set of activities) was supported in the survivor and caregiver research participants. There was evidence that a consistent set of activities happens across camps based on activities being cited as memorable by participants across multiple camps. 

Study Limitations: The study results are under-powered due to a small sample size. There was no control group. The Burden of survey length increased the risk of survey response bias. The research sample population differs from national stroke statistics for age, race, ethnicity, and percentage of hemorrhagic stroke.

Next Steps: Further research of the stroke camp is planned and will include the following enhancements to the initial research study reported here to attain a fully powered data sample, complete data collection in a control cohort, expand researcher assist that includes aphasia friendly support via video and interviews of each participant, and explore mechanisms impacting participant stress such as self-efficacy.  

There are also plans to study whether personality and coping traits of people with high versus low social participation CDSMP preferences may vary with regards to the benefits they derive from stroke camp and other CDSMP models with less social interactions.

Implications for Clinical Practice: Healthcare providers and stroke programs should include stroke camp and other community-based support resources throughout the chronic phase of stroke for survivors and caregivers. Stroke care providers should explore ways to expand stakeholder partnerships and input into stroke support services. Providers should explore alternate modes of CSMP delivery & activities.  

Implications for Research: Research on stroke should include people with aphasia in research design, administration, and review of results since 30% of survivors have an aphasia.  Researchers should also identify and study existing CDSMP for people with stroke not seen in the literature.

References:

1.Benjamin EJ, Blaha MJ, Chiuve SE, et al. Heart disease and stroke statistics-2017 update: A report from the American Heart Association. Circulation. 2017;135(10): e146-e603. doi: 10.1161/CIR.0000000000000485.

2.Ovbiagele, B., Goldstein, L. B., Higashida, R. T., Howard, V. J., Johnston, S. C., Khavjou, O. A., ... & Saver, J. L. (2013). Forecasting the future of stroke in the United States: a policy statement from the American Heart Association and American Stroke Association. Stroke, 44(8), 2361-2375.

3. Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA. 2002;288(19):2469-2475.

4. Boger EJ, Demain SH, Latter SM. Stroke self-management: A focus group study to identify the factors influencing self-management following stroke. Int J Nurs Stud. 2015;52(1):175-187. doi: 10.1016/j.ijnurstu.2014.05.0060-7489.

5. Pindus DM, Mullis R, Lim L, et al. Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services – A systematic review and meta-ethnography. PLoS ONE. 2018;13(2):1-23. doi: 10.1371/journal.pone.0192533.

6. Kendall E, Catalano T, Kuipers P, Posner N, Buys N, Charker J. Recovery following stroke: The role of self-management education. Soc Sci Med. 2007;64(3):735-746. doi: 10.1016/j.socscimed.2006.09.012.

7. Lorig K. Commentary on "evidence-based self-management programs for seniors and other with chronic diseases": Patient experience--patient health--return on investment. J Ambulatory Care Manage. 2017;40(3):185. 

8. Cadilhac DA, Hoffmann S, Kilkenny M, et al. A phase II multicentered, single-blind, randomized, controlled trial of the stroke self-management program. Stroke. 2011;42(6):1673-1679. doi: 10.1161/STROKEAHA.110.601997.

9. Robinson-Smith G, Harmer C, Sheeran R, Bellino Vallo E. Couples' coping after stroke-A pilot intervention study. Rehabil Nurs. 2016;41(4):218-229.. doi: 10.1002/rnj.213.

10. Wray F, Clarke D, Forster A. Post-stroke self-management interventions: A systematic review of effectiveness and investigation of the inclusion of stroke survivors with aphasia. Disability & Rehabilitation. 2018;40(11):1237-1251. doi: 10.1080/09638288.2017.1294206.

11. Ellis J, Boger E, Latter S, et al. Conceptualisation of the 'good' self-manager: A qualitative investigation of stakeholder views on the self-management of long-term health conditions. Soc Sci Med. 2017;176:25-33. doi: 10.1016/j.socscimed.2017.01.018.

12. Kritz F. Camp for stroke survivors. Neurology Now. 2018;14(2):15. 

13. Kendall E, Foster MM, Ehrlich C, Chaboyer W. Social processes that can facilitate and sustain individual self-management for people with chronic conditions. Nursing Research & Practice. 2012:1-8. doi: 10.1155/2012/282671.

14. Miller KL. Patient centered care: A path to better health outcomes through engagement and activation. NEUROREHABILITATION. 2016;39(4):465-470. doi: 10.3233/NRE-161378.

15. Donnellan C, Hevey D, Hickey A, O'Neill D. Defining and quantifying coping strategies after stroke: A review. J Neurol Neurosurg Psychiatry. 2006;77(11):1208-1218. doi: 10.1136/jnnp.2005.085670.

16. Mathews M, Beck J, Bogner A, et al. Stroke Camp Offers Emotional and Physical Relief for Stroke Caregivers. 2016.