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A Person-Centered Approach Understanding Stroke Survivor and Family Caregiver Emotional Health

Varughese, Tina; Casameni Montiel, Tahani; Engebretson, Joan; Savitz, Sean I.; Sharrief, Anjail; Beauchamp, Jennifer E. S.

Author Information
Journal of Neuroscience Nursing: April 2022 - Volume 54 - Issue 2 - p 68-73
doi: 10.1097/JNN.0000000000000640

Abstract

Fifteen million adults experience stroke worldwide.1–3 Approximately one-third of stroke survivors (SSs) experience symptoms of depression,4,5 and at least 20% develop anxiety.6 There is a significant prevalence of poststroke depression and anxiety that is often not central to the stroke recovery process.5 Symptoms of poststroke depression are associated with morality, high levels of disability, lower levels of rehabilitation effort, poor outcomes, and quality of life.4–7 Because most SSs are discharged home from the hospital, many receive care from family caregivers (caregivers).8 Approximately 24% of caregivers of SSs report depressive symptoms, whereas 46% report anxiety.9 Important to note, SS and caregiver mental health and well-being seem to be interdependent.9–11 However, symptoms of depression and other psychosocial stressors are often undetected and untreated in SSs, and the caregiver's mental health is often neglected.5 To achieve optimal outcomes, stroke recovery care requires strategies that consider the mental health needs of both the SS and the caregiver.12

Patient-centered engagement in research entails meaningful participation from both patients and caregivers throughout the study. Patients and caregivers as research partners use their personal experiences and perspectives to impact research outcomes.13 Incorporating patients and caregivers early and often throughout the research process can ultimately lead to greater use of the research results by patients and caregivers.14–16 Consideration of the patient and caregiver is necessary to develop recovery interventions that address the mental healthcare needs of both.17 However, stroke outcomes research is not always patient- or person-centered and may not align with SS and caregiver needs and preferences.18 The purpose of this study was to incorporate a person-centered approach to better understand the emotional health needs and perspectives of SSs and their caregivers. Importantly, the term “needs” was not limited, and included any emotional health topic expressed by the participants such as emotional health concerns, treatments and services, and lived experiences.

Methods

A descriptive study that consisted of developmental and exploratory phases was completed using qualitative and quantitative approaches.14–16 Before the developmental phase, 2 SSs and 2 caregivers of SSs were identified as willing research partners from existing stroke research and community partnerships. During the exploratory phase, convenience sampling was used to recruit SSs and caregivers from existing stroke research and community partnerships across a major city in Southeast Texas. Individuals were eligible if they were 18 years or older, could speak and read English or Spanish, and had a history of stroke or reported being a family caregiver of an SS. Screening methods for inclusion criteria included self-report within community settings, reviewing research records of SSs and caregivers who previously provided consent for future contact for potential participation in additional studies, and accessing an electronic health record system to identify potential participants during outpatient stroke clinic visits.

Study methods were approved by the university-affiliated institutional review board, and procedures were followed in accordance with institutional guidelines. The institutional review board waived the requirement for written consent from participants completing the survey. However, the group interview participants provided written consent.

Developmental Phase

The objective of the developmental phase was to create a survey and a guide of probing questions for use in the exploratory phase with input from the SS and caregiver research partners that explores the emotional health needs and perspectives of SSs and their caregivers. The investigative team adopted an iterative process19 to develop an 18-question survey using Research Electronic Data Capture (REDCap)20,21 that comprised 10 demographic (Supplemental Digital Content 1 table, available at https://links.lww.com/JNN/A396) and 8 emotional health (Supplemental Digital Content 2 table, available at https://links.lww.com/JNN/A397) questions. To develop the survey, the multidisciplinary investigative team generated questions based on their knowledge of the literature addressing poststroke mental health. The compiled questions were reviewed with the research partners, who were asked what mental or emotional health topics are important. The team revised the survey based on the input received from the research partners, and the research partners read the revised survey and provided additional input. The team finalized the survey questions by revising any questions that the research partners indicated needed further revisions (eg, missing important answer responses). Item 1 captured age in years using an open-ended question. Items 2 to 10 used a multiple-choice format with possible responses ranging from 2 to 8. Six of items 2 to 10 allowed more than 1 response. Items 11 to 17 used a multiple-choice format with possible responses ranging from 2 to 18. Three of items 11 to 17 allowed more than 1 response. Four of items 11 to 17 allowed a free-form text to explain their response. Item 18 used a free-form text response to an open-ended question. Although the questionnaire was developed and edited by a multidisciplinary team of stroke care providers, researchers, and nurses, the questionnaire has not been externally validated. To ensure the survey was aphasia friendly, a local stroke aphasia community group provided input, which included adding simple images associated with each question. The survey was translated from English to Spanish by the research team and the bilingual research partner. A probing questions guide was developed by the research team for the semistructured group interviews and consisted of 11 open-ended, probing questions (Supplemental Digital Content 3 table, available at https://links.lww.com/JNN/A398).

Exploratory Phase

Cross-sectional data were collected from the emotional health survey and the semistructured group interviews by trained research members. All surveys were reviewed at the time of data collection for accuracy and completeness. No identifiers were obtained, and surveys were automatically assigned a unique identification number upon data entry into a REDCap project database and stored behind a university encrypted drive and firewalls.21,22 Hard-copy surveys were secured and stored behind a double lock at the university.

The semistructured group interviews were stratified by participant type to attain homogeneity and support open and honest communication among peers. Three of the research partners actively participated in the interview within their stratified group. The last author conducted both interviews, and the first authors were present and obtained field notes. The investigative team used peer debriefing and discussion to ensure credibility and dependability. Each interview was audio recorded, independently transcribed by the first authors, and validated by the last author. All data were collected from April 2019 to June 2019. Transcripts were stored behind a university encrypted drive and firewalls.

Data Analysis

Descriptive statistics in the form of frequencies and percentages were used to examine demographic characteristics and emotional health data, and the calculated components are described in the Supplemental Digital Content 1 table, available at https://links.lww.com/JNN/A396. Surveys with missing data were included in the descriptive statistics, and therefore, the values or percentages may not add up to 100% because of missing data or rounding. Thematic content analysis methods were used to evaluate the qualitative data.14–16,23,24 The first authors independently examined the qualitative data to obtain a general sense of the data collected and to reflect on the overall meaning. An iterative approach was taken to identify codes from the transcribed interviews, and a codebook was developed. Both first authors conducted thematic analysis by identifying and organizing emerging themes that captured the participants' ideas and, in peer debriefing with the last author, reviewed and agreed upon the thematic analysis. The third author (J.E.), who has expertise in qualitative methodology, validated the final report of the thematic analysis.

Results

Forty emotional health surveys (n = 26 SSs, n = 14 caregivers) were collected (Supplemental Digital Content 1 table, available at https://links.lww.com/JNN/A396). The mean age in years and standard deviation for the SSs was 63 (8.84) compared with 61 (13.35) for the caregivers. Half of the SSs were men, whereas 36% of the caregivers were men. Thirty-one percent of SSs and 36% of caregivers reported being born outside the United States. Ten individuals (n = 7 SSs, n = 3 caregivers) participated in the group interviews. All participants completed the emotional health survey before the group interview. However, the demographic data were not linked to interview participants.

Of the SSs, 73% reported feeling “knowledgeable” or “very knowledgeable” about emotional health issues, compared with 19% of the caregivers (Supplemental Digital Content 2 table, available at https://links.lww.com/JNN/A397). Frustration (65%) and anxiety (54%) were identified as issues that mattered personally to SSs, compared with stress (71%), worry (57%), and frustration (57%) in caregivers. Three SSs (12%) identified other emotional health issues, reporting isolation, aphasia, and “hav[ing] trouble with people understanding me at times. They [family sisters] get mad at me & frustrated annoyed [they are in denial].” Stroke survivors (65%) and caregivers (29%) noted specific fears. The survey included the question, “Since the stroke, if you could wish for anything, what you would wish for?” Of the 22 SSs who responded, 68% wished to return to prestroke normalcy or functioning. Others (18%) indicated a desire to have not experienced a stroke, have more support groups and speech classes, and have known what to expect during recovery. Caregiver wishes included wishing for more independence and full physical recovery for the SS.

Semistructured Group Interviews

Four emerging themes were identified across both interview groups: (1) receiving support from those in similar situations, (2) poststroke emotional responses, (3) situations experienced in healthcare settings, and (4) hypervigilance for sudden and unexpected events.

Receiving Support from Those in Similar Situations

An SS stated: “…a lot of people don't understand and to get in a group like this, to get it off your chest to talk to [people] who understand was very beneficial for me to get over the hump and live the rest of my life.” Caregivers said that having a “community is so important” and “it is a social outing for the week.” Stroke survivors echoed similar ideas and stated that their support group is “very relieving” and that they considered themselves part of a “really strong support group.” One caregiver expressed, “…if they can get attached somehow to a group that understands, it's been wonderful to yell, cry, laugh, all those things.”

Poststroke Emotional Responses

One SS explained, “…I find in the group a lot of people are really stressed out and worried because with aphasia, you really…don't remember how to do what most people would say simple things, but it's not simple to me.” Stroke survivors described feeling “angry with myself,” “very frustrated,” and “embarrassed.” Caregivers discussed challenges in providing care while balancing their own personal lives, which led to feelings of guilt, including “…I find myself being torn between trying to get care for them, and wanting to say ‘I don't want to do this anymore,’ and that gets you a certain amount of guilt.” Caregivers expressed the frustration and impatience associated with the SSs' constant need for repeated explanations. One caregiver explained, “…I'm having to repeat myself…. He'll ask me one-minute, what time is the appointment…. Five minutes later, he can be asking the same question.”

Situations Experienced in Healthcare Settings

An SS stated, “…doctors, they are focused on the health part of it…they really do not see the emotional part of it….” Another SS noted that expressing one's emotions is important but may be difficult: “When you've got your…15-minute slot, they've got to figure out…what do you need. To include mental health as well, that would be a challenge.” Several SSs described a perceived lack of being cared for “holistically.” Caregivers emphasized the need for understandable poststroke education. A caregiver explained, “…I don't know what that means, but you're telling me it means something bad, so I'm just going to sit here and Google it.... Instead of you just sitting here and telling me in real talk what it is that's actually going on and what's the next step.”

Hypervigilance for Sudden and Unexpected Events

An SS said, “…you fear to have another one and never really know it and by then it might be too late….” Caregivers described a hypervigilance for sudden and unexpected medical events. One explained, “…I usually keep my door cracked opened just in case, so I've caught him having a seizure…it's just like ok I'm prepared just in case. But I don't want to be prepared.” Fear of the unknown and death were commonly discussed by SSs and caregivers such as “…know it [death] is coming”; “I have no clue if he's even going to be there when I get there”; and “Do I hear him breathing?”

Discussion

Survey responses indicated commonalities and differences among SS and caregiver emotional health knowledge and needs. Both frequently reported frustration and stress. Whereas caregivers identified feelings of worry, SSs reported anxiety as well as depression, memory loss, and difficulty concentrating. Emerging themes from the qualitative data included receiving support from those in similar situations, poststroke emotional responses, situations experienced in healthcare settings, and a hypervigilance for sudden and unexpected events.

Most of the SSs reported feeling “knowledgeable” or “very knowledgeable” about emotional health issues, whereas most caregivers felt “neutral.” Previous studies indicate that some SSs may be unable to accurately describe their knowledge of emotional health risks because of the severity of the brain injury.25 On the basis of the input from the research partners, survey questions were included that asked about poststroke emotional health issues (eg, guilt) beyond the emotional health issues (eg, depression) commonly reported in the stroke literature. The predominant symptoms of emotional distress identified from the survey data were frustration and stress in both SSs and caregivers. Anxiety was identified by most of the SSs compared with only 1 caregiver. Caregivers expressed their feelings of worry when providing care. Generalized anxiety disorder is frequently expressed as anxiousness or worry.26 Evidence suggests that up to 38% of SSs develop anxiety.6,27 Far less is known about anxiety in caregivers of SSs who may identify with excessive worry rather than anxiousness feelings.

The research partners recommended including additional issues (eg, memory loss) that they believed were important when attempting to better understand poststroke emotional health. Cognitive impairments, including memory loss, in SSs have been associated with poststroke depression.28,29 Memory loss was reported as frequently as depression by SS survey participants, and a minority of SSs reported both memory loss and depression. Difficulty concentrating was reported in approximately one-third of SSs and is commonly associated with generalized anxiety disorder.26

The research partners proposed survey questions about cultural “close-mindedness” and specific fears or wishes. Almost half of all survey participants indicated their culture is close-minded to emotional health issues indicating an issue that warrants additional exploration and consideration in approaches to poststroke mental healthcare. Mental health labels are often coupled with stigmatizing beliefs.30 The research partners suggested we use the term “emotional health” instead of mental health to encourage open and honest disclosure of mental health experiences.

If nursing practice is a patient- and family-centered partnership focused on well-being, then the focus should include the SSs' and caregivers' mental health needs and experiences rather than the psychiatric diagnosis alone with which the experience is attributed. A reorientation of the healthcare system to center on SSs' and caregivers' mental health needs, preferences, and values may be needed. Furthermore, outcome measurements that reflect what really matters to the SSs and their caregivers should be considered.

Limitations and Strengths

The sample was from 1 city in Southeast Texas. The small sample size impedes the ability to reach data saturation and limits our study's generalizability to a greater population, but the intimate nature of our qualitative method allowed us to create a facilitative environment for participants to voice their needs and experiences. The emerging themes provided additional insight into the cross-sectional survey results. Although we did not have access to the SSs' electronic health records to determine the stroke type and severity, the participants were community-dwelling, and the cases would likely be categorized as mild. These variables limit the generalizability of our findings. A strength was the availability of the survey in both English and Spanish. Existing emotional health data from Spanish-dominant SSs and caregivers are limited. Almost one-fourth of the SSs were being cared for by their child. There is a paucity of emotional health research that includes representation of child caregivers of parent SSs. By creating an aphasia-friendly survey, data were captured from SSs with aphasia who face unique emotional health challenges that may otherwise not have been known or captured.31 However, consideration of the reading level and comprehension, and external validation of the emotional health survey are warranted before wider survey dissemination.

A major strength of the study is that research partners provided continued input that clinicians and investigators may not have been able to provide. Our mixed methods approach gave a broader insight beyond the survey findings by giving a voice to the participants and providing additional insight into participants' lived experiences and points of view. However, the perspectives and experiences described during the interviews may represent the most vocal participants, because one-on-one interviews were not offered.

Conclusion

The complexity of poststroke mental health issues requires multiple perspectives and, perhaps most importantly, insight from SSs and their caregivers that are personally affected. The quantitative results indicated that commonalities and differences exist among SS and caregiver emotional health knowledge and needs. The qualitative findings indicated similar emerging themes across SS and caregiver interview groups. Poststroke mental healthcare services should consider the similar and unique emotional stressors of the SS and caregiver and may consider providing reoccurring mental health education and multifaceted treatment approaches, including provision of peer-to-peer support. The small sample size precludes generalizing the results into the broader stroke population. However, by leveraging the lived experience of both SSs and their caregivers, the results highlight the importance of poststroke emotional health and provide the foundation for nursing studies designed to address the most important mental health questions and concerns from the perspective of SSs and their caregivers. The emerging themes may be explored in a larger sample.

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Acknowledgments

The authors would like to acknowledge the patient collaborators, the Stroke Transitions Education and Prevention Clinic, the Memorial Hermann-TMC Stroke Support Group Network, The University of Texas Health Science Center at Houston Institute for Stroke and Cerebrovascular Disease Community Advisory Board, West Houston Stroke Warriors, Houston Aphasia Recovery Center, and the YMCA. The authors would also like to thank Markeda Wade, Andrea Ancer, and Alejandra Castro for their assistance.

References

1. Guilbert JJ. The world health report 2002—reducing risks, promoting healthy life. Educ Health (Abingdon). 2003;16:230. doi:https://doi.org/10.1080/1357628031000116808
2. Virani SS, Alonso A, Benjamin EJ, et al. Heart disease and stroke statistics—2020 update: a report from the American Heart Association. Circulation. 2020;141:e139–e596. doi:https://doi.org/10.1161/CIR.0000000000000757
3. George MG, Tong X, Bowman BA. Prevalence of cardiovascular risk factors and strokes in younger adults. JAMA Neurol. 2017;74:695–703. doi:https://doi.org/10.1001/jamaneurol.2017.0020
4. Stern-Nezer S, Eyngorn I, Mlynash M, et al. Depression one year after hemorrhagic stroke is associated with late worsening of outcomes. NeuroRehabilitation. 2017;41:179–187. doi:https://doi.org/10.3233/NRE-171470
5. Towfighi A, Ovbiagele B, El Husseini N, et al. Poststroke depression: a scientific statement for healthcare professionals from the American Heart Association/American Stroke Association. Stroke. 2017;48:e30–e43. doi:https://doi.org/10.1161/STR.0000000000000113
6. Chun HY, Whiteley WN, Dennis MS, Mead GE, Carson AJ. Anxiety after stroke: the importance of subtyping. Stroke. 2018;49:556–564. doi:https://doi.org/10.1161/STROKEAHA.117.020078
7. Naghavi FS, Koffman EE, Lin B, Du J. Post-stroke neuronal circuits and mental illnesses. Int J Physiol Pathophysiol Pharmacol. 2019;11:1–11.
8. Joo H, Dunet DO, Fang J, Wang G. Cost of informal caregiving associated with stroke among the elderly in the United States. Neurology. 2014;83:1831–1837. doi:https://doi.org/10.1212/WNL.0000000000000986
9. Shaffer KM, Jacobs JM, Coleman JN, et al. Anxiety and depressive symptoms among two seriously medically-ill populations and their family caregivers: a comparison and clinical implications. Neurocrit Care. 2017;27:180–186. doi:https://doi.org/10.1007/s12028-016-0358-3
10. Kruithof WJ, Post MW, van Mierlo ML, van den Bos GA, de Man-van Ginkel JM, Visser-Meily JM. Caregiver burden and emotional problems in partners of stroke patients at two months and one year post-stroke: determinants and prediction. Patient Educ Couns. 2016;99:1632–1640. doi:https://doi.org/10.1016/j.pec.2016.04.007
11. Balhara YP, Verma R, Sharma S, Mathur S. A study of predictors of anxiety and depression among stroke patient-caregivers. J MidLife Health. 2012;3:31–35. doi:https://doi.org/10.4103/0976-7800.98815
12. Bakas T, McCarthy M, Miller ET. Update on the state of the evidence for stroke family caregiver and dyad interventions. Stroke. 2017;48:e122–e125. doi:https://doi.org/10.1161/STROKEAHA.117.016052
13. From the Patient-Centered Outcomes Research Institute. The value of engagement. 2018. https://www.pcori.org/engagement/value-engagement. Accessed October 4, 2021.
14. Beck CT, Harrison L. Mixed-methods research in the discipline of nursing. ANS Adv Nurs Sci. 2016;39:224–234. doi:https://doi.org/10.1097/ANS.0000000000000125
15. Creswell J, Clark V. Designing and Conducting Mixed Methods Research. 3rd ed. Thousands Oaks, CA: SAGE Publications, Inc; 2018.
16. Öhlén J, Janice M. Morse & Linda Niehaus (2009). Mixed method design: principles and procedures. Forum Qual Soc Res. 2011;12:23–38.
17. Wan-Fei K, Hassan STS, Sann LM, Ismail SIF, Raman RA, Ibrahim F. Depression, anxiety and quality of life in stroke survivors and their family caregivers: a pilot study using an actor/partner interdependence model. Electron Physician. 2017;9:4924–4933. doi:https://doi.org/10.19082/4924
18. O’Brien EC, Xian Y, Fonarow GC, Olson DM, Schwamm LH, Hernandez AF. Clinical commentary on “certain uncertainty: life after stroke from the patient's perspective”. Circ Cardiovasc Qual Outcomes. 2014;7:970. doi:https://doi.org/10.1161/CIRCOUTCOMES.114.001484
19. Denny MC, Vahidy F, Vu KY, Sharrief AZ, Savitz SI. Video-based educational intervention associated with improved stroke literacy, self-efficacy, and patient satisfaction. PLoS One. 2017;12:e0171952. doi:https://doi.org/10.1371/journal.pone.0171952
20. Harris PA, Taylor R, Minor BL, et al. The REDCap consortium: building an international community of software platform partners. J Biomed Inform. 2019;95:103208. doi:https://doi.org/10.1016/j.jbi.2019.103208
21. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research Electronic Data Capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42:377–381. doi:https://doi.org/10.1016/j.jbi.2008.08.010
22. Harris A, Austin M, Blake TM, Bird ML. Perceived benefits and barriers to yoga participation after stroke: a focus group approach. Complement Ther Clin Pract. 2019;34:153–156. doi:https://doi.org/10.1016/j.ctcp.2018.11.015
23. Clark VLP, Ivankova NV. Mixed Methods Research: A Guide to the Field. Thousand Oaks, CA: SAGE Publications, Inc; 2016.
24. Green J, Thorogood N. Qualitative Methods for Health Research. 4th ed. Thousand Oaks, CA: Sage Publications; 2018.
25. Klinedinst NJ, Dunbar SB, Clark PC. Stroke survivor and informal caregiver perceptions of poststroke depressive symptoms. J Neurosci Nurs. 2012;44:72–81. doi:https://doi.org/10.1097/JNN.0b013e3182477944
26. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders: DSM-5™. 5th ed. Arlington, VA: American Psychiatric Publishing, Inc; 2013.
27. Stein LA, Goldmann E, Zamzam A, et al. Association between anxiety, depression, and post-traumatic stress disorder and outcomes after ischemic stroke. Front Neurol. 2018;9:890. doi:https://doi.org/10.3389/fneur.2018.00890
28. Farner L, Wagle J, Engedal K, Flekkøy KM, Wyller TB, Fure B. Depressive symptoms in stroke patients: a 13 month follow-up study of patients referred to a rehabilitation unit. J Affect Disord. 2010;127:211–218. doi:https://doi.org/10.1016/j.jad.2010.05.025
29. Obaid M, Flach C, Marshall I, D A Wolfe C, Douiri A. Long-term outcomes in stroke patients with cognitive impairment: a population-based study. Geriatrics (Basel). 2020;5:E32. doi:https://doi.org/10.3390/geriatrics5020032
30. Wright A, Jorm AF, Mackinnon AJ. Labeling of mental disorders and stigma in young people. Soc Sci Med. 2011;73:498–506. doi:https://doi.org/10.1016/j.socscimed.2011.06.015
31. McCurley JL, Funes CJ, Zale EL, et al. Preventing chronic emotional distress in stroke survivors and their informal caregivers. Neurocrit Care. 2019;30:581–589. doi:https://doi.org/10.1007/s12028-018-0641-6
Keywords:

care partners; caregivers; emotions; mental health; nursing; qualitative; stroke; survivors; transition of care; vigilance

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