Background

Stroke is a life-threatening event and represents a turning point in a person's life. Its onset is sudden resulting in many and varied post-stroke problems.1-3 Approximately 15-16 million people worldwide suffer a stroke annually, and cerebrovascular disease is the leading cause of disability in adults in the USA and Europe; approximately 50% of people surviving strokes live with long-term disabilities.3-6 Furthermore, the progressive aging of the population and the fact that three-quarters of strokes occur in patients over 65 years of age will result in an increase in incidences of stroke in coming years.1,3,4,7 It is obvious that there are human costs for many people surviving strokes.1 Generally speaking, stroke leads to major disabilities, for example, problems with physical activity, cognitive and behavioral deficits, with consequences often impacting social functioning, wellbeing and the ability to work.4,8 Cognition is a reaction on how to perceive through our senses, and the impairment of a cognitive domain like attention, concentration, memory, spatial awareness and perception is among the most difficult losses to manage.9,10 Thus, stroke survivors with cognitive impairment have different needs than other groups of patients, because of the possible experience of loss of self, disruption in sense of self, loss of control and being distanced from those around them.10-12 Hence, it is evident that the human cost of stroke, for the patient, their relatives and society in general, is significant.

Rehabilitation is a fundamental element in stroke treatment, with the aim to improve daily living.7 According to the World Health Organization, rehabilitation of people with disabilities is a process aimed at enabling them to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Rehabilitation provides disabled people with the tools they need to attain independence and self-determination".13^(p.1) Involvement of the patient and their relatives is important to achieve independence and self-determination, and therefore successful collaboration between patient and healthcare provider (HCP) is crucial.14 Rehabilitation is part of long-term care defined as admission to healthcare facilities that provide board and room for the purpose of care, attainment and maintenance of optimal physical, sensory, intellectual, psychological and social functional levels over an extended period.13,15 Long-term care is ongoing, until maximum possible functional and personal independence is achieved, through such care and rehabilitation.7 Studies have shown that relationship building in stroke rehabilitation wards is a major theme and can be challenging.16 Supporting and helping the patient understand the situation are two key elements in rehabilitation, which require good, effective communication between the patient and HCP.17,18

In this review, the definition of HCP is based on the PubMed Mesh term: men and women working in the provision of health services, whether as individual practitioners or employees of health institutions and programs, professionally trained and subject to public regulation.19 In rehabilitation, the interpretive and consoling function17 particularly includes communication and it is well known that effective communication between persons who need health care and persons who provide it is fundamental to the delivery of high-quality healthcare services.20,21

Communication impairment following a stroke is common and may result in acute stroke communication-related impairment, a recognized problem affecting about 38% of people surviving a stroke.22,23 Communication in this review is defined as the exchange or transmission of ideas, attitudes or beliefs between individuals or groups - both verbal and nonverbal.24

Aphasia, defined as a cognitive disorder marked by an impaired ability to comprehend or express language in its written or spoken form,25 and dysarthria, defined as disorders of speech articulation caused by imperfect coordination of pharynx, larynx, tongue or face muscles,26 are defined communicative disorders, but disruption in communication may also be a result of impairment in speech, language, cognition, vision or hearing, all of which may affect the patient.23,27 Communication impairments can have a severe impact on the patient, for example, significant effect on quality of life, loss of friends, isolation and depression as well as an effect on interactions and relationships.22,27,28 Ineffective communication between persons, either HCP or patient, can be distressing for both parties.20 Expressing needs can be difficult for a person with communication deficits, and physical needs are more likely to be met than, for example, emotional needs.29 Difficulties in expressing needs may influence social participation, social relation, psychological wellbeing, foster negative health consequences and in the end reduce the outcome of rehabilitation.20,22,29 It emphasizes the importance of the relationship between the stroke survivor and the HCP. The attitude of HCPs appears to influence the success of communication and they should strive to be aware of their own communication ability.30 The HCP's inability to understand patients may leave them feeling frustrated, angry, depressed, lonely and guilty.20 When HCPs exclude patients with aphasia or do not respond to the patients' attempt to communicate, it may leave them feeling excluded and isolated and not respected as individuals.21,30 It can be humiliating when patients with aphasia cannot express themselves while interacting with HCPs.12,20 On the other hand, patients often describe that the experience of communication is favorable when HCPs take the time to interact with them.20 A study by Balandin et al.20 shows that when patients had communication impairments, they felt like they were treated differently by at least some HCPs, for example, by talking to the patient in a patronizing tone or assuming that the patient has an intellectual disability. In contrast, when HCPs created "an openness" in their relationship with people with aphasia, it left the patient feeling like a unique human being who was equal and worthy.21 Even though the HCPs had a lack of knowledge of communication strategies, a respectful attitude would facilitate communication.30

Sundin et al.31 found that when patients and HCPs were present and attending to each other, it contributed to an understanding of each other, which facilitated the feeling of comfort and being at home. It seems that HCPs' way of relating and communicating makes a difference in the patients' experience of long-term care; hence, stroke care requires an active partnership that is considered the foundation of care.32,33 Attitudes from HCPs seem to affect stroke survivors' ability to maintain dignity and be acknowledged as individuals; therefore, being treated with respect is vital to their care.34 It is possible that different ways of communicating, like irony or humor, may influence the interaction and communication between stroke survivors and HCPs, either by facilitating an equal and worthy relation, or in contrast, leaving the patients with a feeling of not being taken seriously.20,31 Patients with cognitive problems experience different dilemmas, and Sorensen et al.10 found in their study that when HCPs performed activities that were associated with the patients' cognitive functions, the use of professional language decreased. To ease the conversation, HCPs may use irony or humor, which may lead to either misinterpretations by the patients or create an empathetic and trusting relationship between patients and HCPs.35

Several studies have implied that humor has a positive effect on wellbeing and humor can contribute to developing a therapeutic HCP-patient relationship.35,36 Humor can be effective as a coping strategy and create a pleasant atmosphere that motivates the patient to be more positive.35-37 However, humor means different things to different people and is not always appreciated.35 Healthcare providers need to know the patient and their attitude toward humor before using it.35 In communicating with persons who have survived a stroke, it is important to keep in mind that communication impairments depend on the area of the brain affected.23

Stroke survivors are a heterogeneous group of people with different needs and priorities.1 Caring for them requires knowledge about stroke survivors in general, but also the ability to understand the value of patient-centered care and the importance of good relationships between stroke survivors and HCPs.38

Stroke is a life-threatening event, and rehabilitation of stroke survivors must involve effective communication between stroke survivors and HCP.1,17 This systematic review will explore how communication between HCPs and stroke survivors is experienced by stroke survivors themselves. Expressing needs may be difficult for a person with communication deficits, and the relationship and communication with the HCPs seems to be important to support and help the patient understand the situation.17,20 Knowledge of how the stroke survivor experiences the communication and relationship with the HCPs may help to improve the stroke survivors' experience and the outcome of long-term care and consequently enhance the level of dignity and life quality.34

A preliminary search in the JBI Database of Systematic Reviews and Implementations Reports, The Cochrane Database of Systematic Reviews, PubMed and CINAHL did not identify any current or ongoing systematic reviews on this or other similar topic.

Inclusion criteria

Types of participants

This review will consider studies that include any adult (18 or more years of age) stroke survivor who receives long-term care and speaks the same language as the HCPs. Any types of stroke diagnosis and HCPs will be included.

Phenomena of interest

The current review will consider studies that investigate adult stroke survivor's experiences in regard to communication and relationships with HCPs.

Context

The current review will consider studies in hospitals that treat stroke survivors through long-term care and in rehabilitation settings. Acute settings and outpatients will be excluded.

Types of studies

The current review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.

In the absence of research studies, other text such as opinion papers and reports will be considered.

Search strategy

The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Third, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English, Swedish, Norwegian, German and Danish will be considered for inclusion in this review. Databases will be searched from their inception until present. The literature search will be carried out under the guidance of a research librarian.

The databases to be searched include:

PubMed (MEDLINE), CINAHL, PsycINFO and SCOPUS.

The search for unpublished studies will include:

MedNar, ProQuest and the following homepages such as World Health Organization (http://www.who.int/en/), European Stroke Organization (http://www.eso-stroke.org/eso-stroke/home.html) and World Stroke Organization (http://www.world-stroke.org/).

Initial keywords to be used will be:

Stroke survivors, stroke, communication, attitudes, beliefs, experience, relationship, long-term care, rehabilitation, health care providers, in hospital.

Assessment of methodological quality

Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer.

Data extraction

Data will be extracted from papers included in the review by two independent reviewers using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review questions and specific objectives. For missing information or to clarify unclear data, authors of primary studies will be contacted.

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories will then be subjected to a meta-synthesis to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.

Acknowledgements

The authors wish to thank Jette Thise Pedersen, Aalborg University Library, for assisting in the literature search plan and Research Secretary Line Jensen, MA, for proofreading.

Appendix I: Appraisal instruments

QARI appraisal instrument

Appendix II: Data extraction instruments

QARI data extraction instrument

References