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Challenges and Opportunities in Stroke Nursing Research: Global Views From a Panel of Nurse Researchers

Ramazanu, Sheena; Bautista, Cynthia; Green, Theresa; Rhudy, Lori M.; Rogado, Maria Isabelita C.; Baby, Priya; Woon, Caroline; Martinez, Rudolf Cymorr Kirby Palogan; von Gaudecker, Jane R.; Nydahl, Peter; Mbakaya, Balwani Chingatichifwe; Said, Nizar B.; Hayek, Mohammed F.; Sila, Faith; Rahn, Anne Christin; Minagawa, Takako; Olson, DaiWai M.

Author Information
Journal of Neuroscience Nursing: June 2022 - Volume 54 - Issue 3 - p 111-115
doi: 10.1097/JNN.0000000000000643
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Abstract

The recent coronavirus pandemic (COVID-19) has added uncertainty and strains to healthcare systems globally. These strain reinforce that we are living in a volatile, uncertain, complex, and ambiguous world. In response, nurses have identified both challenges and opportunities to improve patient care.1,2 During the 5th International Neuroscience Nursing Research Symposium, a diverse group of neuroscience nurse experts from Singapore, India, the United States, Australia, New Zealand, the Philippines, Malawi, Germany, Palestine, Kenya, and Japan discussed stroke nursing research. Healthcare is a volatile, uncertain, complex, and ambiguous industry sector that both impacts and is impacted by innovation.3,4 This article identifies challenges and opportunities for stroke nursing research and provides discrete recommendations to address multidisciplinary collaboration and engage nurses in research.

Challenges in Stroke Nursing Research

Many institutions across the globe paused research, particularly if not directly or urgently related to COVID-19.5 This pause highlighted challenges for nurses who wanted to contribute to stroke research. Our panel identified challenges in nursing independence, the processes of informed consent and randomization process, obtaining adequate independent funding, recruiting research subjects, and working with vulnerable groups (Table 1). Although these are challenges identified by neuroscience nurse scientists conducting research in stroke populations, they are common and relevant to neuroscience nursing research in other populations as well.

TABLE 1 - Challenges (C) and Opportunities (O) in Stroke Nursing Research
Components Singapore India United States New Zealand Australia Philippines Malawi Germany Palestine Kenya Japan
Informed consent n/a Ca Ca Ca Ca Ca Cb Cb n/a Cb Ca
Nurse as primary investigator Ob Ca
Ob
Cb
Oc
Cb Cb Cc
Oa
Ca Oc Oc
Cb
Ca Cc
Oa
Independent funding Ob Cc Oc Cc Cb
Oa
Cc
Oa
Cc Cc Cc Cc Cb
Oa
Participant recruitment and retention Cb Cc Oa Cb Oa Cb Oa Cb Cb Oa Ca
Digitalization of stroke health services Oc Cc Ob Ob Cb
Ob
Cc Cc Oc Cc Cc Ca
Ob
Randomized clinical trials of nursing care interventions Ca Cb Cc Cb Cb Cc Cc Oc Cc Cc Cb
Health literacy and language Cb Cc
Oa
Oa Oa Oa Cb
Oa
Ca Ob Cc Ca Cc
Navigating stroke care for vulnerable groups Ca Cb Cb Cb Ob Cc Cc n/a Ca n/a n/a Ca
Research collaboration among academic institutions Oc Ob Oc Cb Ob Ob Cc
Oa
Ob Ob Ob Ob Cb
Abbreviation: n/a, not applicable.
Ratings: aminor, bmoderate, and cmajor.

 Nurse as an Independent Investigator. In every country, nurses face challenges to serving as the primary investigator. There are differences in the definition of roles and scope of practice both within and between countries. Defining these roles in neurology with subsequent development, evaluation, and implementation to support evidence-based practice is one important aspect to initiating change. Involving nurses as decision coaches in interdisciplinary treatment teams will enable informed decision making and secondary stroke prevention in cross-sector care to support management and patient-centered care after stroke.6

 Informed Consent. Challenges of consent taking were observed in India, the Unites States, Australia, Malawi, Germany, Kenya, Japan, New Zealand, and the Philippines. Unlike the Unites States, which has both central and local institutional review board options,7 European Union laws on data protection are interpreted differently by each federal state. This leads to challenges in multicenter studies wherein consent for an observational trial may be required in one state, but not another. Because stroke patients may not yet have a legal representative present, consent must be obtained retrospectively or even after discharge.

A common interpretation of the wording surrounding participant consent is the need for the nurse researcher to contact the physician before approaching an eligible subject. This presents a barrier to patient autonomy if the physician bars the nurse from approaching subjects. This also fails to acknowledge nursing autonomy and creates a false hierarchy wherein the physician has the power to allow or not allow the nurse to conduct research.8 During the pandemic, the transition from in-person subject recruitment to video and electronic consent required modifications that were often delayed because of the competing institutional review board priorities related to COVID-19–focused research.9

 Independent Funding. Major funding challenges were observed in India, New Zealand, Malawi, Germany, Palestine, and Kenya. In India, the availability of funding for health research needs significant boost.10 Limited agencies fund nursing-specific research, although stroke is a major public health concern. In Malawi, because of structural and resource challenges, there is lack of uniformity in how stroke funding is administered and accessed. Postgraduate and academic research funding is available primarily based on philanthropic interests. Similarly, stroke nursing research is not factored into the Kenyan National Strategy for the Prevention and Control of Non Communicable Diseases. Stroke research initiatives have rarely been funded by the government.

 Participant Recruitment and Retention. Recruitment and retention of stroke patients for research can be a challenge and remains a concern.11 Challenges were observed in India, New Zealand, Germany, Palestine, Japan, Singapore, the Philippines, and the United States. Time and logistics are fundamental barriers to successful recruitment and retention for both the researcher and the participants. One team identified that 6 factors (dysarthria, sensory aphasia, history of a previous stroke, spontaneous clinical recovery, death, or mutism) limit recruitment and retention in stroke.12 A change in patient circumstances can also affect the research as their condition may worsen and they become too unwell to continue. In a study about optimizing recruitment for stroke recovery research, physician engagement and a streamlined customer service were important factors to improve enrollment and maximize efficiency.13 Including culturally appropriate research tailored to the unique needs of the subjects and based on a philosophy of mutually beneficial engagement will improve recruitment and retention efforts.11

Population size and geography impact recruitment. For example, New Zealand has a small population scattered across 2 islands. However, the use of mobile technology for primary stroke prevention demonstrates the visibility of a stroke research project as potentially beneficial to stroke patients and highlighted ease of virtual participation.14 The decline in hospital visits for stroke impacted the sample from which to recruit stroke participants in research.15 Similarly, limitations on visitors (as seen during the pandemic) resulted in more patients with stroke being hesitant to enroll in research.16 Relying on family members' advice is common, and limited number of hours for visiting required study staff to make more recruitment visits and more follow-up calls to family members and, as a result, has led to decreased efficiency and increased cost.9 Maintenance of relationships with the participants remains key, but unrealistic expectations can be difficult to maintain.17

 Vulnerable Groups. Challenges in navigating stroke research for vulnerable groups were identified in Singapore, India, the United States, Australia, the Philippines, Germany, and Japan. One challenge is the absence of a centralized digital healthcare database for indigenous populations in certain countries. Another may be a lack of culturally and linguistically appropriate primary and secondary prevention tools for stroke education. Using a culturally sensitive health check program,18 engagement can occur with vulnerable populations about their health risks and to embed informed choices into their day-to-day lifestyle.

Vulnerable groups in Australia include the Aboriginal and Torres Strait Islander people, as well as others from culturally and linguistically diverse backgrounds. Typically, engaging in research with these vulnerable groups first requires engaging with local spokespersons and community older adults, to obtain permission and approval. In the Philippines, vulnerable populations also include indigenous groups. Research with these individuals require previous clearance from the National Commission for Indigenous People as reflected in the Indigenous Peoples Rights Act.19

Opportunities and challenges were observed in New Zealand, for example. Here, research must be approved through a committee that includes Maori representation. It is important to have information provided in the Maori language, but it can be difficult to achieve engagement through research, particularly because some are unable to travel or do not have online access. Whanau, also known as extended family, is fundamental to Maori and Pacific Island groups so involving the whole Whanau in the research is key. Rural areas of India including the far-flung, remote, and tribal population are in dire need to penetration of stroke care services. In the hierarchical model of healthcare delivery system of India, nurses are in a unique position to serve these vulnerable populations and explore ways of mitigating stroke risk among them.

Research Opportunities

The panel identified opportunities for nurses to contribute to stroke research including nurse as investigator, information digitalization, health literacy, and collaboration (Table 1). Nurses must be enabled to participate in nursing research and to act as the primary investigator. There is an increased need to capitalize on opportunities for digitalization of stroke health research. The expansion of health literacy and the use of common language will improve research opportunities for nursing. Finally, the pandemic highlights the ability of nurses to collaborate on a global scale as academic partners (Table 1).

 Nurse as Investigator. Opportunities to improve the role of nurse as a primary investigator were highlighted by teams from Australia, Singapore, Germany, India, the United States, the Philippines, Palestine, New Zealand, and Japan. Increasingly, neuroscience nurses are educated and equipped to serve as primary investigator. Countries such as Japan, India, Palestine, and Germany have seen ongoing governmental and academic emphasis on nursing education and professional development. Globally, the changing demographics of stroke survivors supports a need to examine working-age stroke survivor outcomes separately from those of older adults.20,21 There is a critical need to examine equity and diversity in the context of care delivery, which includes acknowledgment of the social determinants of health.22 There is an urgent need for research that focuses on patient-reported outcomes in stroke survivors and family caregivers.

 Digitalization of Stroke Health Services. Digital health includes the range of technologies that can be used to treat, monitor, collect, and share health information. Opportunities for digitalization of stroke health services were identified in Singapore, the United States, New Zealand, Australia, Japan, and Germany. The health industry in Australia has long used innovative technologies to improve healthcare delivery.9 Patients in New Zealand are comfortable with using online platforms to connect with their healthcare teams, which makes online research more accessible. In line with the build-measure-learn approach, psychosocial educational interventions such as the Head, Heart, Hands intervention found improvement in patient-caregiver dyadic coping in poststroke familial contexts.23,24

Digital tools for managing acute stroke care and monitoring post–acute-stroke care for patients discharged to community are rapidly being developed and integrated into care systems.25,26 Embedded within many international stroke guidelines are recommendations for the digitalization of elements of stroke patient care.27 The intent of digital health technology is to improve service quality, efficiency, and equity in access to care and includes nurse-led stroke research.10

 Health Literacy and Language. Health literacy and language were identified in India, the Philippines, the United States, New Zealand, Australia, and Germany as areas of opportunity for nursing research. Limited health literacy has been reported to be associated with advanced age, immigrant background, functional literacy, and socioeconomic status.28 India is an ethnolinguistically diverse country with more than 121 spoken languages and this, requires collective efforts in promoting health literacy. Linguistic diversity necessitates the development of stroke-specific clinical tools in diverse ethnic languages. German is spoken by 95% of the population in Germany, but the country has one of the highest immigration rates in Europe and is home to people with linguistic diversity.29 Nursing research, using qualitative and quantitative techniques, could improve patient outcomes in this area.30

 Research Collaboration. Opportunities for research collaboration among academic institutions were identified by all panel members. India is witnessing growing collaboration efforts among nurse academicians of various institutions. In New Zealand, researchers teamed up with the Auckland hospital to ensure collaboration and a direct link between the neurology department at Auckland City Hospital and the university research team through the neurological foundation.31,32 This has allowed for neurological discoveries to develop into clinical treatments beneficial for patients in upper limb, walking, and dysphagia treatment.31–36

Summary

A fundamental step forward in stroke nursing research is to recognize the value of the nursing perspective. There are similarities in the challenges and opportunities for stroke nursing research across all countries. The increasing emphasis on outcomes of treatment puts nursing science in the forefront of research that focuses on self-management and outcomes important to patients. There is an opportunity to consider new approaches to connect with research participants. As patients and their partners become more adept with technology, new opportunities for recruitment, participation, and retention in research will arise. Nurse scientists will need to develop new competencies to understand the required process of obtaining informed consent and conducting research virtually, using phone, email, or video strategies.

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Keywords:

COVID-19; global views; stroke nursing research; technology

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