Communication strategies used by Parkinson's nurse specialists during healthcare interactions: A qualitative descriptive study.

AIM: To explore the range and use of communication strategies by Parkinson's nurse specialists, and describe key communication strategies, to support health professionals in their healthcare interactions with people with Parkinson's.
DESIGN: A qualitative descriptive study.
METHODS: Due to the COVID-19 pandemic, the study took place in an online setting. Online semi-structured interviews were conducted with eight Australian Parkinson's nurse specialists and one UK Parkinson's nurse between August and October of 2020. Interviews explored healthcare communication, specifically (1) ways Parkinson's nurse specialists support communication during healthcare interactions, (2) factors influencing the use of communication strategies, and (3) how the nurses learned to communicate effectively with people with Parkinson's disease. Reflexive thematic analysis was used to analyse the data.
RESULTS: Parkinson's nurse specialists described the importance of establishing strong therapeutic relationships, the key role of the communication partner, adapting communication to reduce cognitive load, ensuring two-way understanding, and enabling expressive communication for people with Parkinson's. Knowing the person and family, knowing the disease and understanding the symptoms appeared to influence the choice of communication strategies in healthcare interactions. Learning through others, learning through experience and learning through education and research were considered important parts of becoming a skilled healthcare communicator when working with people with Parkinson's.
CONCLUSION: Knowledge and use of effective communication strategies to support people with Parkinson's is crucial for all health professionals working with this population, in order to reduce the occurrence of poor healthcare outcomes. A deep understanding of how Parkinson's disease affects communication and experience in implementing communication strategies were reported as contributing to the success of Parkinson's nurses in communicating with their patients. IMPACT: This study provides a description of the key, translational communication strategies that can be used by all health professionals to support healthcare interactions with people with Parkinson's.

INTRODUCTION

Communication can be challenging for many people with Parkinson's, particularly as their disease progresses. People with Parkinson's often present with hypokinetic dysarthria, a motor‐speech disorder characterized by low speech volume, difficulty initiating speech, slowed rate of speech, and imprecise articulation (Duffy, 2013). People with Parkinson's also experience additional communication changes that can make conversation difficult, including cognitive and non‐verbal communication changes such as facial masking, reduced gesture, difficulties with topic maintenance and turn‐taking, bradyphrenia (slowness of thought and impaired working memory), and difficulties with language and word‐retrieval (Johansson et al., 2018; Whitworth et al., 1999).

The communication changes experienced by people with Parkinson's can make it difficult for them to navigate healthcare interactions (Baylor et al., 2018). These communication changes can also make healthcare interactions challenging for health professionals. Health professionals working with people with Parkinson's sometimes find it difficult to accurately understand their patients, impacting upon their ability to ensure high quality care. With many healthcare providers adopting a more patient‐centred approach to health care, there is growing recognition of the need to ensure effective communication between healthcare professionals and their patients (Phelan et al., 2020). Research has documented the increasing risk of adverse events and reduction in patient autonomy as a result of poor healthcare communication (Bartlett et al., 2008; WHO, 2001). Given the significant negative repercussions of poor healthcare communication on healthcare outcomes (Armstrong et al., 2019; Burns et al., 2015), there is a clear need for research supporting ways to enhance communication between health professionals and people with Parkinson's.

Parkinson's nurse specialists are central to the healthcare of people with Parkinson's. The Parkinson's nurse role is unique to Australia and the UK and requires extensive clinical experience and postgraduate nursing studies. Parkinson's nurse specialists offer clinical services in hospitals, clinics and home settings are employed by both public hospitals and local Parkinson's organizations. They assist in streamlining care for people with Parkinson's, including refining medications and other management, supporting caregivers, providing information and education, and liaising with various health professionals. The success of Parkinson's nurse specialists in reducing the burden of Parkinson's on people with Parkinson's, their carers, and on the healthcare system is well established (Bolland et al., 2016; Hellqvist & Bertero, 2015). However, there is little research describing the unique role Parkinson's nurses' play in supporting healthcare communication for people with Parkinson's, in particular how they use communication strategies to assist communication with their patients. Communication strategies, in this context, refer to the ways in which a health professional changes their communication or uses a communication tool to support the communication needs of another person (Nykanen et al., 2013). Understanding more about these skills could assist other health professionals in knowing what they can do in their own healthcare settings to improve healthcare communication and improve the quality of healthcare for those with Parkinson's.

Background

A large body of research has demonstrated the impact of communication breakdown between health professionals and people with communication disorders (Armstrong et al., 2019; Bartlett et al., 2008; Burns et al., 2015; Clancy et al., 2020; Murphy, 2006). Communication breakdown experienced by these individuals is significantly higher than those without a communication impairment and can have negative effects on their quality of healthcare and wellbeing (WHO, 2001). Communication breakdown between health professionals and people with communication disorders has been reported to lead to inappropriate assessment and diagnosis, breaches to patient safety (Burns et al., 2015), limitations in the patient's ability to develop relationships with their health professional, and poor exchange of important healthcare information (Clancy et al., 2020).

A number of studies have explored the perspectives of health professionals and people with communication disorders on healthcare interactions (Armstrong et al., 2019; Burns et al., 2015; Clancy et al., 2020; Murphy, 2006). These interactions were reportedly improved by allowing additional time for each interaction, the longevity of the relationship between the health professional and the patient, demonstrations of empathy and respect from the health professionals, and the presence of a caregiver or partner (Armstrong et al., 2019; Burns et al., 2015; Clancy et al., 2020; Murphy, 2006). Barriers to healthcare interactions identified in these studies included a lack of time for the healthcare consultation, lack of interest from the health professionals, limited knowledge of effective communication strategies, and domineering caregivers (Armstrong et al., 2019; Burns et al., 2015; Clancy et al., 2020).

Health professionals have acknowledged that a lack of training on how to communicate effectively with people with communication disorders significantly impacts their confidence and ability to implement communication strategies (Armstrong et al., 2019; Burns et al., 2015; Clancy et al., 2020; Murphy, 2006). Notably, health professionals have expressed a desire for training in order to support their work with patients with communication disorders (Armstrong et al., 2019). While training of health professionals to use communication strategies for people with Parkinson's is needed, little is known about how health professionals can effectively change their communication behaviours in order to support health care interactions. To support the development of training, much more needs to be understood about what successful healthcare communication looks like between health professionals and people with communication disorders.

According to Giles et al. (1973), successful communication interactions depend on factors pertaining to both the person with communication difficulties (for the purpose of this research, a person with Parkinson's) and the person they are communicating with. Communication accommodation theory (Giles et al., 1973) provides an important framework through which to understand the behaviours of successful communication partners. Communication accommodation theory is used to analyse social interactions and explores how social relationships are shaped through changes to communication (Giles et al., 1973). This theory suggests that, during any two‐way interaction, both communication participants adapt to develop similarities (or differences) in their communication styles to improve or maintain an interaction. Each conversation participant recognizes the other's communication needs and style and modifies their own style to facilitate communication (Giles & Ogay, 2007; Simmons‐Mackie, 2018). According to communication accommodation theory, there are several ways in which a person adjusts their communication to suit their conversation partner, including adapting or changing elements of speech, language, pronunciation, volume, discourse style, and non‐verbal communication. For example, when speaking with a close friend as compared with a work colleague, the speaker may change their language, tone or gesture to reflect that of their conversation partner (Giles et al., 1973).

When used appropriately, communication accommodation theory can support effective two‐way communication by enhancing feelings of respect and understanding for both conversation participants (Giles et al., 1973). Inappropriate accommodation, however, can occur when one conversation partner incorrectly assumes or does not fully understand the communication needs of the other (Giles & Ogay, 2007). This often results in communication breakdown. Simmons‐Mackie (2018) hypothesise that this is exactly what happens when communication breakdowns occur between health professionals and people with communication disorders. In instances such as these, the health professional either does not attempt to accommodate (Burns et al., 2015) or they do so inappropriately, for example increasing their speech volume when a patient has dysarthria and not a hearing impairment (Giles & Ogay, 2007). Although well‐intentioned, this misguided accommodation is often perceived as condescending and acts as a barrier to communication (Simmons‐Mackie, 2018). Adapting to the communication style of someone with communication challenges is complex. Without knowledge or training, communication partners face an immense challenge. To adapt communication accordingly, health professionals must have an understanding of their patients' communication needs (Simmons‐Mackie, 2018).

Communication partner training programmes have been found to be an effective way to improve communication between health care professionals and people with communication disorders such as aphasia (see Simmons‐Mackie et al., 2016 for review). Communication partner training programmes and studies describing communication strategies for people with Parkinson's are scarce and are often grouped together with research focusing on people with aphasia or other acquired neurological disorders (see Thilakaratne et al., 2021 for review). For example, in their study evaluating the effect of a communication partner training programme for enrolled nurses working with nursing home residents, Eriksson et al. (2016), included one dyad involving a participant who had Parkinson's, and the remaining four dyads included participants who had had a stroke. The research that does exist in this field (Armstrong et al., 2019; Johansson et al., 2018), while valuable, does not include the perspectives of health professionals who have specialized skills working with people with Parkinson's, a disease that presents its own unique communication challenges. Consequently, there is no research that has produced any concrete, practical or translational communication strategies for people with Parkinson's. This makes the already complex task of determining how best to support health care interactions for people with Parkinson's even more difficult for researchers and clinicians. There is a clear need to explore what strategies support health care interactions between people with Parkinson's and health care professionals.

As a first step to understanding what strategies can support communication between health professionals and people with Parkinson's, we explored the perspectives of health professionals who frequently communicate with people with Parkinson's; Parkinson's nurse specialists. Given their degree of specialization and ongoing involvement with their patients, Parkinson's nurses are likely to have substantial expertise in communicating with people with Parkinson's (Bolland et al., 2016). Gaining an understanding of how Parkinson's nurse specialists communicate with their patients could reveal high quality communication strategies and process to shape future training programmes for health professionals. It is the hope of the research team that by capturing these strategies and exploring these processes, the results of this study may be used by health professionals working with people Parkinson's to improve their clinical practice and healthcare communication.

THE STUDY

Aims

The present study aimed to explore the communication strategies reported to be used by Parkinson's nurse specialists, in their healthcare interactions with people with Parkinson's.

Specifically, the following research questions were posed:

How do Parkinson's nurse specialists describe the ways they support communication during healthcare interactions with people with Parkinson's?

How do Parkinson's nurse specialists describe selecting the communication strategies they use when supporting people with Parkinson's?

How do Parkinson's nurse specialists report developing their skills as effective communicators with people with Parkinson's?

Design

This study employed qualitative description (Bradshaw et al., 2017) to explore the perspectives of Parkinson's nurse specialists about their communication with people with Parkinson's. Qualitative description was considered appropriate for this early exploratory study due to the pragmatic orientation of the enquiry, rooted in a desire to contribute to change in clinical practice (Chafe, 2017; Morgan, 2014).

Participants

Purposive sampling was used to recruit nine Parkinson's nurse specialists with experience working within healthcare contexts in Australia and the UK. These included hospitals and outpatient (primarily home or clinic) settings (Pring, 2005). Australian Parkinson's associations acted as ‘gatekeepers’ (Mcareavey & Das, 2013), sharing recruitment information for the study with Parkinson's nurse specialists. Researchers also advertised the study on social media and delivered an informal presentation to one Western Australian Parkinson's organization to assist in recruitment. Inclusion criteria included current or previous employment as a Parkinson's nurse specialists and access to internet and video conferencing technology. The researchers were from a university and were not affiliated with any of the Parkinson's organizations used for recruitment. Participant demographic information is displayed in Table 1.

TABLE 1

Participant demographic information

	Age	Place of work	Years of experience	Additional qualifications
Participant 1	56	Community	16	Diploma in Parkinson's Disease Care
Participant 2	56	Community	20	Diploma in Neuroscience
Participant 3	32	Community	10	No additional qualifications
Participant 4	48	Hospital	2	Graduate Certificate in Neuroscience
Participant 5	45	Community	5	Masters of Palliative Care
Participant 6	47	Community	10	Masters of Parkinson's Management
Participant 7	49	Community	12	Graduate Certificate in Adult Education Training Graduate Certificate in Neurodegenerative Nursing
Participant 8	56	Community	9	No additional qualifications
Participant 9	59	Community	22	Certificate in Counselling Skills Graduate Certificate in Gerontology

Data collection

Due to the COVID‐19 pandemic data collection took place in an online setting. Online semi‐structured interviews were conducted with eight Australian Parkinson's nurse specialists and one UK Parkinson's nurse between August and October of 2020 using WebEx video conferencing (Cisco, 2020). Where WebEx was unable to be used due to internet or technology difficulties, telephone interviews were conducted. A topic guide framed the direction of the semi‐structured interview and captured information in response to the research questions. The topic guide followed a loose, flexible structure consistent with semi‐structured interviewing (Kallio et al., 2016). The topic guide (Appendix A) was piloted and refined during pilot testing and during data collection as part of an ongoing reflexive iterative process (Minichiello et al., 2008). All interviews were audio‐recorded (with consent), enabling transcription and analysis.

Ethical considerations

University ethical approval was granted (HRE2020‐0379). All participants received participant information statements and provided written, informed consent prior to the interview. Identifying details were removed during transcription to ensure confidentiality. Data were stored on a secure drive that was accessible only to the research team.

Data analysis

Reflexive thematic analysis (Braun & Clarke, 2006, 2019) was used to analyse the interview data. Thematic analysis is a widely used method for analysing qualitative data, with numerous types of thematic analysis used to address a range of research questions. Reflexive thematic analysis was chosen as it allowed for a more organic interpretation of meaning situated within the healthcare exchange/context as opposed to other approaches, such as qualitative content analysis (Vaismoradi et al., 2013). Reflexive thematic analysis was also selected because of its acknowledgement and encouragement of the researcher's active role in analysis (Braun & Clarke, 2019). Within reflexive thematic analysis, the researcher strives for transparency throughout the research process, continually documenting and explicitly rationalizing decisions about interpretations. This adds to the richness of interpretation and rigour of the research (Braun & Clarke, 2019; Tong et al., 2007).

The six steps of reflexive thematic analysis were used to shape the analytic process, and this is outlined below:

Data familiarization

The first author engaged in a process of data immersion (Mays & Pope, 1995), repeatedly reading and checking transcripts, and listening to and watching interview recordings. During data immersion, the researcher took extensive notes to assist in the interpretation of meaning and development of initial codes (Tong et al., 2007). These notes included ideas about possible future codes or quotes that researchers felt were meaningful in relation to research questions.

Generating initial codes

Data were coded inductively, as limited existing research to support interpretation existed. Inductive coding ensured codes were closely linked to the inherent meaning within the data, supporting credibility and rigour (Braun & Clarke, 2006; Tong et al., 2007). Codes consisted of words, phrases or paragraphs that appeared to embody important ideas, for example, specific communication strategies, understanding how and when to use particular strategies, and ways of developing high quality communication with people with Parkinson's. A codebook was used to support researcher reflection on the meanings represented in the data and supported interpretation. While the use of codebooks in the reflexive thematic analysis is a vexed issue (Braun & Clarke, 2021), it is important to note that the purpose of the codebook was not to provide a prescriptive lens through which to judge and extract meaning. The use of a codebook was not ‘fixed’ as seen in a coding reliability approach (Braun & Clarke, 2021) and was repeatedly refined in an iterative process as new (or changes to) ideas were observed. All data were reviewed with each codebook refinement. Coding was undertaken by the first author using NVivo software. A reflective process that required the first author to explain ideas within coding to the rest of the research team was used to support contextual interpretation ensure a deep and nuanced understanding of the data (Braun & Clarke, 2021).

Developing themes

Two researchers collaboratively discussed, reviewed and grouped codes into broader ideas representing key concepts within the data. This commenced with small groupings, for example pairing two‐three codes together, and then emerged into larger groupings of codes, following discussion. Initially, themes reflected key goals of communication strategies, profound statements about Parkinson's disease and its impact on communication, ideas about knowing how, when and which strategy to use with whom.

Reviewing themes

Groupings were repeatedly refined and developed into themes through discussion amongst all researchers and reflection on research aims and questions (Braun & Clarke, 2019). During this process, coding references within each theme were constantly reviewed to check consistency with draft themes. Researchers critically reflected on the relationships between codes, themes and research questions (Figure 1).

FIGURE 1

The process of analysis between codes, sub‐themes, themes and research questions

Defining themes

Once themes were developed, researchers described meanings inherent to individual themes and explored how themes related to one another and to the research questions. Researcher's discussed labelling of themes, some names were drawn directly from a code that researchers felt best captured the meaning inherent to that theme. Other theme names used language created by the researcher to articulate the ideas they believed that theme represented.

Producing the report

After themes were finalized, numerous quotes were carefully selected and the best‐reflected ideas were inherited to each theme. This process was also iterative, with authors discussing which quotes would be best to use and which language described themes best. The development of the final themes outlined in the results section is a result of extensive analysis, interpretation and reflection between all authors.

Rigour

Concerns about maximizing rigour shaped decisions about design, data collection and analysis. Participants with extensive experience with working with people with Parkinson's were recruited to ensure they were able to provide deep insight into being an experienced communicator with this participant group. The interview process adopted an emic perspective to data collection, using a flexible topic guide to capture and follow key ideas raised by participants, with the interviewer ensuring they probed to clarify uncertainty or increase the depth of understanding of key ideas (Milne & Oberle, 2005). The interviewer (first author) undertook interview training, focusing on techniques to ensure the interview process was open and captured the experiences of participants in an authentic way (Milne & Oberle, 2005). Commencing transcription and data coding while data collection continued ensured researchers were able to reflect on the data and refine and adapt interview processes. To support trustworthiness (Minichiello et al., 2008; Tong et al., 2007), consensus coding, with two researchers discussing the meanings within each of the codes was undertaken for 20% of the data (Tong et al., 2007). Rather than consensus coding and use of a codebook reflecting a neopositivist orientation (Braun & Clarke, 2019), these processes were used to support transparency, consistency, and engagement with the data, particularly given the first‐named author was new to the field of qualitative research. These processes shaped discussion and were vital in ensuring meanings captured were consistent with the ideas inherent within the data. An audit trail was kept, providing a clear account of the coding process and outlining the reasoning behind decisions (Tong et al., 2007).

The researcher plays an important role in developing and interpreting themes, it is important that they reflect upon, and make explicit to the reader, the ways in which their own internal bias and beliefs may influence the collection and analysis of data (Braun & Clarke, 2019). All researchers involved in this study have backgrounds in health care, including speech pathology and psychology. The last two named authors are affiliated with Park C, a research hub for understanding and managing Parkinson's. The first author has a family member with Parkinson's disease who has inspired her interest in this research.

FINDINGS

Nine female participants (M(age) = 50, SD = 7.8, M(yrs of experience) = 12, SD = 6.2) engaged in semi‐structured online interviews. One participant was from the UK and the remaining eight participants were from Australia. Themes were developed in line with each research question and are summarized in Figure 2.

FIGURE 2

Thematic map

Research question (RQ) 1: How do Parkinson's nurse specialists describe the ways they support communication during healthcare interactions with people with Parkinson's?

Communication strategies described by Parkinson's nurse specialists encompassed five broad themes with themes reflecting the functions that each strategy supported.

RQ1: Theme 1: Establishing a therapeutic relationship to create effective communication

The importance of building a therapeutic relationship with people with Parkinson's to support effective communication was a central idea discussed amongst participants. Participants described distinctive, specific strategies they use to build this relationship including using therapeutic touch, authentic and gentle communication.

‘So that's a gentle voice, a gentle hand and a gentle touch’ (Nurse 7).

The role of reassurance and emotional support was integral within the development of this therapeutic relationship to create a sense of continuous connection.

‘I sort of just say to people that if nothing else, I'm someone at the end of the telephone, maybe to just troubleshoot things with or provide that emotional support’ (Nurse 3).

As well as focusing on the processes used in establishing a therapeutic relationship, participants clearly recognized the ongoing contribution of the relationship in facilitating effective communication.

‘… we've already built that rapport. … communication is much enhanced when you've got that relationship with a person’ (Nurse 5).

It is clear that participants utilize and place importance on the therapeutic relationship not only to support the quality of the healthcare they are providing but also to support their healthcare communication.

RQ1: Theme 2: Adapting communication to reduce the cognitive load of the interaction

Participants described the way they adapted their own communication to accommodate and overcome communication difficulties associated with impaired cognition, motor planning, comprehension, and bradyphrenia that co‐occur with Parkinson's. The use of additional supports (for example, visual, gestural and written supports) was extensively discussed as an important contributor to reducing the cognitive load for people with Parkinson's.

‘So, if you're explaining something, I find drawing it helpful or having a visual piece to demonstrate’ (Nurse 7).

Participants explained that as well as using additional materials, changing their own language or breaking the language down was also an important contributor to reducing cognitive load.

‘If you are trying to explain something complex, you need to break it down to simple parts, so that the complexity of it makes sense’ (Nurse 6).

More specifically, participants described using closed questions to simplify information.

‘I just use yes / no answers, probably you know, closed questions…’ (Nurse 4).

Or rephrasing questions to support understanding of ideas and information.

‘If they are not getting it, you just go back and ask the question in a different way. It would be things like rephrasing, paraphrasing, simplifying the question’ (Nurse 9).

Allowing additional time for the healthcare interaction was discussed by all participants as an important strategy to support communication with people with Parkinson's.

‘Parkinson's must never be rushed’ (Nurse 9).

Allowing additional time was discussed as being particularly important in accommodating for, and overcoming limitations linked to the symptoms of bradyphrenia and impaired motor planning.

‘If they are bradyphrenic as well, I mean then you've got to give them time. They're thinking, they're just getting there and then trying to formulate the words (pause). So, it's giving them the time’ (Nurse 7).

RQ1: Theme 3: Supporting people with Parkinson's to use strategies to improve their expressive communication

Participants clearly identified that communication strategies enacted by people with Parkinson's themselves could enable individuals to express themselves more effectively. Participants described their role and processes to support and prompt the person in the use of these strategies. One way to achieve this was by asking the person with Parkinson's to change their communication, at the moment, for example,

‘I'll tell them to stop, think about what they want to say and start again’ (Nurse 5).

In a more metacognitive approach, supporting people with Parkinson's to recall and implement the strategies taught in speech therapy was something participants described doing to support expressive communication.

‘So, I'd remind them, I'd say, “was there anything the speech therapist was saying to you about what might help you?”’ (Nurse 1).

Participants also reported that they would directly implement speech strategies they recognized as important with the person with Parkinson's.

‘So, I would do the strategies with them. You know, ‘Stop. Take a deep breath.’ Get them to think big, think loud’ (Nurse 9).

Participants drew on a range of communication tools to support people with Parkinson's to communicate expressively. Additional resources including pacing boards, communication books and getting the person with Parkinson's to write something down were all described as useful in supporting expressive communication.

‘If they are festinating (stuttering), I might use strategies to help such as a pacing board’ (Nurse 8).

‘Sometimes they prefer a whiteboard and a marker, or just a little notebook to help them express themselves’ (Nurse 8).

‘It will be like pictures for pointing and that kind of stuff so, it could be like communication books, things like that’ (Nurse 6).

RQ1: Theme 4: Using explicit strategies to support two‐way understanding

Participants described the importance of using several strategies which aimed to create effective two‐way communication with people with Parkinson's. The use of these strategies supported mutual understanding. Explicitly checking and clarifying with the person with Parkinson's was seen as important in ensuring shared understanding.

‘I'm quite open about saying, “Did I make myself clear, you know, are you understanding me”’ (Nurse 9).

Participants also described strategies important in making sure that the person with Parkinson's had ample opportunity to correct misunderstandings, including providing opportunities to clarify and allowing time to respond.

‘I give them the option to say, “No, you are on the wrong track there. It's not that at all”’ (Nurse 5).

As many people with Parkinson's experience hypophonia, close listening was also seen as important in creating mutual understanding. Participants identified strategies they use to hear and understand, including moving physically closer.

‘When they are hypophonic and their voice is kind of a whisper, you have to get close, getting on their level and leaning in to hear them’ (Nurse 2).

Decreasing background noise to hear people with Parkinson's best to support understanding was also identified as a useful strategy.

‘I'll say to them, “do you mind if we turn off the radio, do you mind if we turn off the TV?”, because I'm having a bit of a problem catching what they are saying’ (Nurse 3).

In these examples, it is clear that Parkinson's nurses explicitly attempt to support shared understanding.

RQ1: Theme 5: Recognizing the role of the communication partner

Participants recognized that the person with Parkinson's regular communication partners (such as spouses) played an important role in the healthcare interaction. However, they were described as central in both facilitating and inhibiting successful communication with people with Parkinson's. Some Parkinson's nurse specialists described communication partners as being helpful in facilitating healthcare interactions,

‘Sometimes we may use a family member to kind of translate since they might understand somebody who's got a very slurred or quiet voice’ (Nurse 4).

and highlighted the importance of the communication partner in being able to clarify or check information.

‘You can check the accuracy of what the person is saying through the partner’ (Nurse 1).

In contrast, participants also reported that communication partners can act as a barrier to achieving effective communication, as they can talk over or for the person with Parkinson's.

‘Sometimes when there are communication difficulties, there's always a tendency for the carer or the partner to talk for them’ (Nurse 3).

This highlights the need for healthcare workers to manage the communication exchange with the communication partner, as well as the person with Parkinson's.

RQ2: How do Parkinson's nurse specialists describe selecting the communication strategies they use when supporting people with Parkinson's?

Several important elements appeared to influence the decision‐making and guide when, how, and with whom Parkinson's nurse specialists decided to use specific communication strategies. Three overall themes captured key influences on decision‐making. Themes and sub‐themes are summarized in Figure 2.

RQ2: Theme 1: Knowing the disease

Two sub‐themes represent meaning in this theme. Firstly, a deep knowledge of the disease, it's symptoms, treatments and patterns of progressions (sub‐theme 1) appeared to influence which communication strategies Parkinson's nurse specialists chose to use.

‘Understanding what their issues or limitations are going to be so that you can accommodate them’ (Nurse 6).

Participants described how their knowledge of specific symptoms allowed them to select appropriate communication strategies.

‘Sometimes we've used communication boards, picture boards. I find that they are not effective for everyone, because I think, particularly if somebody's got any degree of cognitive decline, picking the right visual can be difficult for them’ (Nurse 5).

Participants clearly recognized the role medication can play in impacting communication. Many described changes in a patient's communication as a sign that their medication was wearing off, prompting participants to suggest changes to medication, or to attempt communication again with the person when they were ‘on’.

‘…the medications have worn out…and that impacts on it (communication)’ (Nurse 3).

Secondly, an understanding of overall communication strategies that are often useful for people Parkinson's disease (sub‐theme 2) was an important foundation in decision‐making about communication in healthcare interactions. Participants combined this base knowledge of communication strategies, with their knowledge of Parkinson's disease (Theme 1: Knowing the disease) and drew from their clinical practice to decide which strategies tended to be more/less effective for individuals. Linked to Theme 2, this experience, combined with intricate knowledge of the individual (see Theme 2: Knowing the person) influenced decision‐making about communication strategies.

‘If they have got a tremor or like reduced dexterity in their hands or some of those kinds of things, it's very challenging for them either to write something down or even to use things like an I‐Pad’ (Nurse 8).

This apriori knowledge about the disease and relevant overall communication options appears to act as an initial guide or reference point for Parkinson's nurse specialists when they need to select a communication strategy.

RQ2: Theme 2: Knowing the person

The need for person‐centredness, and deepening understanding of the person with Parkinson's appeared central to decision‐making about ways to communicate with the individual. Respecting the individuality of people with Parkinson's guided participant's decision‐making about communication strategies best suited to that person.

‘I'll give you one example of a patient who has got a terrible stutter. He's in a nursing home. He's been known to speech pathologists for years… He knows all the strategies. He knows how to not stutter. But he chooses not to not stutter (laughs).’ (Nurse 5).

In this instance, both parties are aware of strategies to assist the person with Parkinson's; however, this must be weighed up with the individual's wishes and autonomy. This idea was integral to the role of the Parkinson's nurse specialists and how they accommodate communication for people with Parkinson's.

‘We are very patient led, we've got to be’ (Nurse 5).

Participants described this patient‐centred care not only as a deliberate part of their practice but also as a necessity to successfully communicate with people with Parkinson's.

‘Parkinson's will not let you force anything; it's got a mind of its own. I think you've just got to adapt around it’ (Nurse 2).

The refinement and ease of selection of communication strategies were associated with a deepening knowledge of the person with Parkinson's and their family.

‘I would not say that they change, you just know what strategies to use You know what works for that person’ (Nurse 5).

However, as the disease progresses, reliance on communication partners who knew the individual intricately also reportedly increases over time.

‘Once you start getting complicated, you do tend to focus more of the communication on … getting information from the support person’ (Nurse 2).

Participants acknowledged that while they often rely more on communication partners in the later stages of Parkinson's disease to clarify and communicate with, they always attempt communication with the individual with Parkinson's.

‘No matter how uncommunicative someone looks, I will always attempt communication as I would with anyone else’ (Nurse 4).

RQ2: Theme 3: Just knowing

While most participants were able to describe factors that influence their use of communication strategies, all Parkinson's nurse specialists reported that adapting their communication was something they did naturally. Given the intrinsic nature of this skill, participants acknowledged that it was difficult to articulate exactly what they change about their communication or how they know to change it.

‘Gosh, I do not know. It's probably really glaring obvious, and you do not even know what you do, do you?! (laughs)’ (Nurse 3).

It is this innate and ingrained way of knowing, forged by experience, that helps to guide Parkinson's nurse specialists to successfully adapt their communication to support their patients with Parkinson's.

RQ3: How do Parkinson's nurse specialists describe developing their own skills as effective communicators?

Three themes represented the ways in which Parkinson's nurse specialists described learning about communication with people with Parkinson's. These are summarized in Figure 2 and are discussed in detail below.

RQ3: Theme 1: Learning through others

Learning specific communication strategies through others including colleagues and mentors was a central idea within the data.

‘You do pick up things from your colleagues and mentors…. Watching what they do and learning that way’ (Nurse 5).

Participants also acknowledged the benefit of learning communication strategies from speech pathologists.

‘I remember being able to ask and learn a lot from the speech therapist who was down there at the time’ (Nurse 1).

RQ3: Theme 2: Learning through constancy, exposure and experience

Learning through constancy, exposure, and experience was identified as a key way that participants developed their communication skills.

‘I think it comes from experiential learning you know, you just learn your way through doing, trial and error, that kind of thing’ (Nurse 9).

Within this, reflection was also described by participants as an important aspect of learning through experience.

‘You know you look back and reflect on the gaps and what the issues are, if there is a breakdown in communication, why is that happening?’ (Nurse 8).

RQ3: Theme 3: Learning through education and research

Participant responses also included descriptions surrounding more formal and active ways of learning about communication, for example through further education and research.

‘There's a lot of research out there, and the chances are you don't have to re‐invent the wheel, you just have to go looking (laughs)’ (Nurse 3).

Participants recalled completing formal education about communication,

‘I think there was a unit on communication actually, during my registered nursing’ (Nurse 4).

However, participants acknowledged that the real benefit of formal learning was to give strength and structure to their practice.

‘I think that's probably why I did that extra study; you know, it was to give strength to my practice and some recognisable qualification to what I did’ (Nurse 9).

DISCUSSION

The Parkinson's nurse specialists in this study described the processes they feel they use to communicate effectively with people with Parkinson's, the factors that influence their selection of communication strategies, and the ways they have learned and developed their communication skills. It is clear that Parkinson's nurse specialists have a deep understanding of how to accommodate to meet the communication needs of people with Parkinson's. Themes relating to specific communication strategies (addressing research question one) reflect useful strategies identified in the literature for those with Parkinson's (Armstrong et al., 2019; Johansson et al., 2018) and for people with other acquired communication disorders (Burns et al., 2015; Clancy et al., 2020; Murphy, 2006). These strategies include establishing a therapeutic relationship, allowing additional time within healthcare interactions, using a variety of modalities to support expressive communication such as writing, communication books, visual aids and pacing boards.

The present findings support research examining the role of the caregiver as both a facilitator and a barrier to healthcare communication (Armstrong et al., 2019; Burns et al., 2015). Participants described caregivers as helpful and sometimes necessary in facilitating the healthcare interaction, particularly as Parkinson's signs of progress and communication and cognition become more affected (Whitworth et al., 1999). In this instance Parkinson's nurse specialists reported utilizing the caregiver during the healthcare interaction.

Parkinson's nurses also acknowledged that caregivers sometimes speak over or for the people with Parkinson's. When this occurs, Parkinson's nurse specialists reported that they will redirect the conversation to the person with Parkinson's to ensure that they always attempt communication with the individual, regardless of the severity of their Parkinson's symptoms. This idea mirrors findings from studies that have explored people with Parkinson's perspectives on facilitators for effective communication (Armstrong et al., 2019; Johansson et al., 2019). Those with Parkinson's identified health professionals who treat them with empathy and respect as a facilitator to healthcare interactions (Armstrong et al., 2019). This is an important point to consider, and one that reflects the current movement of healthcare towards a more person‐centred approach (Phelan et al., 2020).

Unique to this research is the specificity and detail in which participants were able to describe communication strategies. While health professionals in previous studies have acknowledged that they might adapt or change their communication to support their interactions with a person with communication difficulties, they have not described exactly how they would do this (Armstrong et al., 2019; Burns et al., 2015; Clancy et al., 2020; Murphy, 2006). In this study, Parkinson's nurses specified slowing down their own rate of speech, simplifying their language, breaking down or rephrasing questions, and asking closed questions to reduce cognitive load for their patients. Parkinson's nurse specialists also described using verbal prompts, asking the person with Parkinson's to repeat themselves and encouraging them to use other modalities such as writing or communication books, to support their expressive communication. This is a novel finding, as there are limited studies describing specific communication strategies used by health professionals to support communication with people with Parkinson's (Clancy et al., 2020). This level of detail is necessary to ensure that when communication strategies are shared, they are clearly represented, easy to understand and able to be implemented successfully. The communication strategies described in this study can be used by all health professionals working with people with Parkinson's to refer to and use during healthcare interactions.

This study identifies many factors that influence Parkinson's nurse specialists. Decision‐making about their use of communication strategies with people with Parkinson's. These factors relate to Parkinson's nurse specialists' knowledge and understanding of Parkinson's disease, their awareness of effective communication strategies, and their therapeutic relationship with the person with Parkinson's. Recent research by Simmons‐Mackie (2018) has called attention to the difficulty communication partners (including health professionals) have in successfully accommodating to meet the communication needs of people with communication disorders. By interpreting data from this study within the communication accommodation theory framework, we have a deeper understanding of the communication process that guides effective communication partners during healthcare interactions.

For example, findings from this study indicate that Parkinson's nurse specialists are able to achieve communication accommodation because of their intimate knowledge of Parkinson's disease, including their awareness of specific communication, cognitive and motor symptoms. This finding supports one of the key principles of communication accommodation theory; knowing and understanding the communication needs of your communication partner (Giles et al., 1973; Simmons‐Mackie, 2018). This knowledge supports Parkinson's nurse specialists to understand the communication style of people with Parkinson's. For example, knowing that people with Parkinson's may have hypophonia and using this knowledge to assist in adjusting their communication style and process, e.g. getting physically closer. Through their experience, coupled with their knowledge of the individual, Parkinson's nurse specialists develop an awareness of likely effective (and ineffective) communication strategies, that may be helpful in meeting the communication needs of their patients. This reflects another key idea in communication accommodation theory, adapting or changing your own communication to suit that of your conversation partner (Giles et al., 1973). This helps Parkinson's nurse specialists to determine which strategies to draw upon to support the people with Parkinson's. For example, to accommodate hypophonia, the Parkinson's nurse may move closer, reduce background noise, and/or prompt the person with Parkinson's to speak louder. One clear finding in the study is the importance of the time taken getting to know the people with Parkinson's and their family. This enables the Parkinson's nurse to understand the communicative preferences of the person and guides their decision‐making around which communication strategies they employ.

These findings support Simmons‐Mackie's (2018) suggestion that communication should be adapted for people with Parkinson's and highlights the importance of understanding the communication needs of the people with Parkinson's to make appropriate communication accommodations (Giles et al., 1973). The findings also affirm the role of the therapeutic relationship in facilitating communication accommodation.

Interestingly, as well as the factors described above, all participants identified a level of innateness to their communication with people with Parkinson's (reflected in the Theme; Just knowing). This theme speaks to the importance of experience in becoming an expert communicator with people with Parkinson's, moving away from theoretical knowledge of the disease, and explicit knowledge about the person and their context, to integrating these ideas automatically, making decisions about communication intuitive and innate. This finding highlights the unique and important role that Parkinson's nurse specialists play, as, while communication partner training programmes may include explicit teaching of knowledge about the disease (and strategies that work), and speak to the importance of knowing the person, it is time and practice working with people with Parkinson's that build this expertise in making communication decisions more innate.

This study also explored the ways in which Parkinson's nurse specialists described developing and learning about communication skills. While some data reflected the benefits of learning through professional development or formal education, experiential learning was consistently identified as the most beneficial way of developing effective communication strategies. This suggests that learning about communication strategies through experience and practice is perhaps more effective than being taught communication strategies in a more traditional way. These findings support the interaction‐focussed communication partner training programmes utilized in recent research (Eriksson et al., 2016), where communication strategies were role‐played between speech pathologists and health professionals before being implemented into the healthcare interaction.

Limitations

Although the assumption that Parkinson's nurse specialists are expert communicators with people with Parkinson's, and therefore have knowledge of useful and effective communication strategies was made transparent at the beginning of this paper, evaluation of the effectiveness of strategies was not undertaken as part of this research. Given the small scale, and qualitative design of this study, objectively measuring ‘effectiveness’ of communication strategies was not possible. Future research involving interviews with Parkinson's nurses and people with Parkinson's, or speech pathologists who observe and evaluate a healthcare interaction between a person with Parkinson's and a Parkinson's nurse specialists may overcome this limitation.

As this was an exploratory study involving a small number of participants with limited time, participants were not involved in checking transcripts, providing feedback on results or reflecting on completing interviews in an online setting. For similar reasons, this study did not aim for saturation. Future research with a larger sample size that employs in‐depth interviewing, offering participants the ability to reflect on the researcher's questions and explain their communication skills across multiple interviews may be able to overcome this limitation.

CONCLUSION

This research contributes to our understanding of communication strategies that may be helpful for all health professionals who work and communicate with people with Parkinson's. The findings outline an initial interpretation of the processes of specialized health professionals in adapting and changing their communication to meet the needs of people with Parkinson's. Themes developed in this study support communication accommodation theory, highlighting the importance of understanding communication symptoms, being aware of communication strategies, and knowing the person with Parkinson's, to help facilitate effective communication accommodation. An understanding of this process is extremely useful in shaping an explicit, collaborative, and interaction‐focussed training programme for health professionals, to improve healthcare communication for people with Parkinson's.

CONFLICT OF INTEREST

No conflict of interest has been declared by the authors.

PEER REVIEW

The peer review history for this article is available at https://publons.com/publon/10.1111/jan.15196.

Appendix

Click here for additional data file.