Callers' perceptions of their contact with a rheumatology telephone helpline

Abstract Background Telephone helplines are useful for improving patients' access to healthcare services and reducing the need for frequent face‐to‐face contact with healthcare professionals. Little is known about how people who phone a helpline perceive the encounter. Objectives The aims of the present study were to describe the variation in how callers perceive their encounter with a rheumatology telephone helpline. Methods The study had a descriptive, qualitative design and used a phenomenographic approach, comprising 27 semi‐structured telephone interviews with callers to Rheuma Direct, a rheumatology telephone helpline with specially trained nurses. The callers comprised 22 women and five men, aged 22–89 years (mean 54 years). Results The callers phoned Rheuma Direct when they had problems obtaining answers to questions on the internet or from healthcare professionals. Three descriptive categories emerged: constructive dialogue, specialized competence and applicability. The callers perceived that it was a constructive dialogue when they were able to discuss their concerns with someone, received emotional support, felt reassured and were satisfied with the information provided. They perceived specialized competence when the nurses were experienced and skilful, the advice provided complemented previously received information and when they had more knowledge after the call. The callers perceived that Rheuma Direct had applicability because it was easy to access and they could make different choices before, during and after the telephone call. Conclusions Callers to a rheumatology telephone helpline perceived it as a valuable complement to other sources of information, and felt that it could provide them with the tools to manage their disease better, as well as future contacts with healthcare professionals.


| INTRODUCTION
Rheumatic diseases or musculoskeletal conditions are usually progressive and associated with chronic pain. They are also leading causes of morbidity and disability, giving rise to enormous healthcare costs (World Health Organization, 2018). Telephone helplines have been recognized as a useful means of improving access to healthcare services and reducing the need for frequent face-to-face contacts with healthcare professionals (Royal College of Nursing, 2012). A rheumatology telephone helpline can provide advice and support for people with rheumatic diseases but cannot always replace clinical appointments (Scrivo et al., 2014). One of the challenges of telephone consultations is obtaining a precise description of the caller's problem. Therefore, telephone helpline nurses develop skills that enable them to manage interactions with callers in order to compensate for the lack of visual cues. The quality of information is important for gaining callers' trust (Pettinari & Jessop, 2001). Callers experience safety and satisfaction when they perceive that they are the most important person in the conversation and communication with the telephone nurse is good (Holmström, Nokkoudenmäki, Zukancic, & Sundler, 2016).
Rheumatology telephone helplines are appreciated by patients (Hughes, 2003;Hughes, Carr, Huggett, & Thwaites, 2002) and can provide immediate information, advice and emotional support (Hughes, 2003). The reasons why people call a helpline include a need to discuss changes in their condition, their symptoms or to receive information on diagnosis, medications and blood test results (Brown et al., 2006). Information on rheumatic diseases is often difficult to understand or frightening, so additional support and education are often necessary (Drăgoi et al., 2013). Educational needs vary in accordance with individual characteristics such as gender, age, educational background and disease duration. Therefore, the information and education should be tailored to individual patients' needs (Drăgoi et al., 2013). Providing information is central when helping patients to play a greater role in the treatment of their chronic condition. Information about the condition, treatment or how to avoid a deterioration would help patients to perform self-care and play a greater role in their care (Department of Health, 2011).
The World Health Organization has presented evidence that empowering initiatives lead to positive health outcomes (Wallerstein, 2006). The basis of empowerment is meeting each individual's needs. An empowerment approach involves helping individuals to learn how to think critically and make informed decisions (Anderson & Funnell, 2010). Traditional information provided to individuals by healthcare professionals does not automatically constitute empowerment but, on the other hand, individuals cannot be empowered without information (Piper, 2010). Telephone helpline nurses can promote self-care through individual advice but also give the callers an opportunity to discuss reflections and feelings (Ström, Marklund, & Hildingh, 2009). However, little is known about how people calling a helpline perceive the encounter.
The objective of the present study was to describe the variation in how callers perceive their encounter with a rheumatology telephone helpline.

| METHODS
The study had a descriptive, qualitative design with a phenomenographic approach. Within phenomenography, the focus is on how people perceive a certain phenomenon or aspect of the world.
In the analysis, attention is directed to "how" the phenomenon is perceived and describing the variation in perceptions (Marton & Booth, 1997;Sjöström & Dahlgren, 2002).

| Rheuma Direct
Rheuma Direct (RD) is a telephone helpline manned by specially trained nurses with a university education on rheumatic diseases and many years of experience in rheumatology care. RD is funded by the Swedish Rheumatism Association and Spenshult Research and Development Centre in Sweden. All nurses employed by RD are bound by professional secrecy. The purpose of RD is to provide comprehensive and accurate information about rheumatology, available treatments, research and developments in the field; and to motivate and empower the callers to perform self-care. Contact with RD is available to the general public, which means that anyone can phone or send an email to RD, whether or not she/he has a diagnosis or is a relative, student and so forth. The call is free of charge. The callers are anonymous, which makes it impossible to document the call in the healthcare journal system. In 2016, RD was open on four afternoons a week and 1,142 people (79% women and 21% men) made contact by telephone or email. The average length of the telephone calls was about 14 min.
There was a huge variety of questions, but the most common concerned symptoms, diagnosis, disease development and various forms of treatment.

| Subjects
The inclusion criteria were that the subjects had to have phoned RD within the period January-April 2016.

| Procedures
The data were collected by means of semi-structured telephone interviews. A consecutive sample was used, which meant that during seven predetermined afternoons, all individuals who phoned RD were asked at the end of their call if they would like to participate in a study and be interviewed by a researcher within 1-2 weeks. The nurses gave the callers verbal information and sent them written information. Those who agreed to be interviewed provided the nurses with their name and telephone number. When the researcher contacted the callers, they gave them more detailed information about the background, objective and method of the study, in addition to assuring them that the data, as well as their contact information, would be treated confidentially. Some callers wanted to be interviewed immediately after receiving the verbal information, whereas with others a date and time for the interview were agreed. Informed consent was obtained verbally in connection with the telephone interview. Two pilot interviews were conducted to test the relevance of the questions in relation to the objective of the study. After a quality assessment, it was decided to include the pilot interviews in the data material.
Each interview lasted 15-30 min and was recorded using a digital voice recorder. The focus of the semi-structured interviews was to engage in an open conversation, in order to deepen the understanding of how the callers perceived their encounter with a rheumatology telephone helpline. The following examples of opening questions formulated by the RD nurses were aimed at ensuring that similar data were obtained from all callers: • "What did you think about the conversation?" • "How did you perceive the content of the conversation?" • "How did you feel after the conversation?".
A better understanding of the views expressed by the callers was obtained by means of follow-up questions such as: "How do you mean?" or |"What do you have in mind when you say. ..?".

| Data analysis
The interviews were transcribed verbatim. The data analysis was carried out in several steps, in accordance with the phenomenological method. In the first step, the main researcher and the coresearchers read the interview texts several times to become familiar with and obtain an overall impression of the data (familiarization). Each interview was processed by searching for statements corresponding to the objective of the study (condensation). The findings were then analysed to identify similarities and differences between the statements (comparison). Subsequently, the statements were grouped into different categories based on their characteristics (grouping), and the researchers tried to identify and describe the main similarity of the perceptions within each respective category (articulating). The next step was deciding on an appropriate descriptive label for each category (labelling). The last step in the analysis was comparing the categories in terms of similarities and differences, to ensure that each category had a unique character and was at the same level of abstraction (contrasting). Throughout the analysis, there was a constant backand-forth movement between the different steps (Dahlgren & Fallsberg, 1991;Marton & Booth, 1997;Sjöström & Dahlgren, 2002).

| Ethical approval
All parts of the study were performed with ethical approval from the regional ethical review board in Lund (no.: 2015/495). The callers were informed verbally and in writing about the study, and that participation was voluntary. They were assured of confidentiality and that they could withdraw at any time without having to justify their decision. Immediately after the interviews, the callers were given an opportunity to discuss any feelings or thoughts that might have arisen as a result of the dialogue.

| RESULTS
Three descriptive categories, comprising eight perceptions, revealed how the callers perceived their contact with the rheumatology telephone helpline. The telephone conversation was considered to be a constructive dialogue based on specialized competence, and the helpline was perceived as having applicability. The quotations below illustrate both the uniqueness and the variation of the various perceptions.

| Constructive dialogue
This descriptive category comprised three perceptions: emotional support, safety and satisfaction. A constructive dialogue implied emotional support in the form of being listened to and able to discuss one's concerns with someone who could confirm or refute them. The opportunity to discuss questions with a person who possesses expert knowledge of the area provided a sense of safety, and being encountered with understanding and respect gave rise to satisfaction. 3.1.1 | Emotional support The callers perceived that being listened to and taken seriously during the personal contact with a nurse provided emotional support that gave them strength and energy. They also perceived emotional support when receiving confirmation of something they had thought, read, planned or done. The callers were provided with tools for moving forward, which increased their motivation to perform certain activities, such as different types of self-care and being more assertive in their contacts with the healthcare services: It's not that the person at the other end of the phone tells me that I have this and that, but rather that she/he encourages me to go on. (C11) The conversation with the nurse was perceived as a positive dia-

| Safety
The callers perceived that a conversation with someone who had time to listen and understood what they were talking about provided a sense of safety. It was also reassuring to know that the nurse probably had more knowledge than they had: You go around harping on things and when you can't let go of them you tend to exaggerate them, and I definitely had a different feeling after the conversation. (C16) The answer that callers received from the nurse calmed them, as it provided an explanation and was fairly similar to what they had found on the internet, or what the rheumatologist had told them. Such a confirmation instilled a sense of safety as well as confidence and hope.
The peace and sense of safety that they perceived after the conversation enabled them to let go of certain thoughts: Talking to someone who took a holistic view of the human being and not just their physical symptoms was satisfying: That there is someone who really listens and maybe thinks outside the body. (C19) Believe me, I was so happy and satisfied after the conversation.
I think the information was sufficient and I will not bother to find out any more about it. (C3) However, one caller considered that the conversation with the nurse was unsatisfactory because the answers did not contain more information than what she/he already knew.

| Increased knowledge
The callers perceived gaining increased knowledge and clarity during the conversation with a nurse when provided with easily understandable information and guidance about different options for dealing with their situation. The answer could be to wait for a while before seeking further help from the healthcare service and to try to find a balance between rest and physical activity, but they could also be encouraged to insist that someone in the healthcare service should be listening to them:

RD is a good form of first aid. (C6)
The callers wanted to improve their knowledge and arguments, in order to speed up healthcare processes. Some callers contacted RD to obtain more knowledge shortly before an appointment with their doc- Have not found anyone else in the healthcare service who I can ask such questions as to RD. (C1)

| Applicability
This descriptive category comprised two perceptions: accessibility and possibility to choose. Applicability meant perceiving easy accessibility to RD whenever the need arose. There was the possibility to choose how and when to make contact, which questions to ask, which information to share and which actions to take after the conversation.

| Accessibility
The callers perceived that RD was accessible due to generous operating hours and the simplicity of making contact by telephone or email. They described the contact as more straightforward than that with the healthcare service or public authorities, as RD had no "nurses who acted as gate keepers" (C25). They appreciated receiving immediate answers via email and telephone, as well as not having to wait a long time in a telephone queue. However, one caller considered that the answer from the RD nurse took too long (4 days) and had expected a quicker response. When you phone the rheumatologist, they book a time on a day when they will return your call, but with RD you can phone directly and ask. (C3)

| Possibility to choose
The callers perceived that they had the possibility to choose to contact RD by telephone or email on a day and at a time that suited them best: When you have a question and want an immediate answer or help and there's nowhere else to phone, RD is super because I can put my question to them and get it answered. Thus, I get a quicker response than if I tried to phone, for example, a doctor. (C22) The callers also perceived that they had the possibility to choose whether to remain anonymous, as well as how many personal details, such as their name, age and diseases, to reveal. They appreciated being able to put questions that were important to them to the RD nurse.
Depending on the outcome of the dialogue, the callers either pursued

| DISCUSSION
The study explored variations in how callers perceived a rheumatology telephone helpline. They used the helpline when they had problems in obtaining answers to their questions through the internet or from healthcare professionals. They perceived their encounter with the rheumatology helpline nurses as a constructive dialogue based on specialized competence, and that the helpline had applicability due to easy access.
This result is in line with the results of previous studies on various telephone helplines (Hughes, 2003;Hughes et al., 2002;Ström et al., 2009).
The callers perceived that they were listened to and taken seriously during the dialogue and were satisfied when the nurse was understanding, exhibited an interest in and respect for them as a person, and treated them seriously, which is also in line with the findings of a previous study (Ström et al., 2009). This highlights the importance of interaction in the dialogue and callers' participation in decision making.
It has been shown that rheumatology nursing has an impact on all domains of patients' health, and that the most commonly measured outcomes relate to disease activity, clinical effects, pain, functionality and satisfaction in life (Minnock et al., 2018). This was also true of the present study, as the callers considered it important that the dia- provides a sense of safety and satisfaction. This is in line with the findings of a previous study demonstrating that when the communication is perceived as good and the caller's perspective is the focus, the caller expresses feelings of safety and satisfaction (Holmström et al., 2016).
The nurse's response can reassure callers by providing them with an explanation for their concerns. When a person perceives information as reliable, it increases the possibility that it will help her/him to perform self-care and play a greater role in managing her/his chronic condition (Department of Health, 2011). However, self-care demands constant planning and managing of daily life to obtain control-that is, a combination of processes carried out over a period of time (Arvidsson, Bergman, Arvidsson, Fridlund, & Bengtsson Tops, 2011).
It is therefore necessary that rheumatology telephone helpline nurses find ways of checking a person's level of understanding, as only then can they support and empower a person to engage in self-care.
In the present study the callers felt that they obtained increased knowledge and clarity during the dialogue, when the nurse gave them easily understandable information and guidance adapted to their knowledge level. The dialogue provided callers with tools that gave them greater confidence in their own knowledge. The empowerment approach (Anderson & Funnell, 2010) employed by the RD nurses helped some of the callers to think critically and make informed decisions. An earlier study also showed that callers wanted to be allowed to participate in the dialogue and decision making, and did not consider the helpline just as a source of information (Ström et al., 2009). A nurse-led telephone intervention combining emotional support, health information and decision-making assistance has the potential to reduce health problems and increase the satisfaction of patients and their families when managing rheumatic diseases (Ramelet et al., 2017). Communication skills are essential when providing telephone nursing to callers, but a person-centred approach is equally important for optimal care.

| Strengths and limitations of the study
The intention was to carry out at least 25 interviews, to capture a variety of perceptions. On seven previously agreed afternoons, 27 callers were recruited for the study. The sample size had not been decided beforehand but was determined by the callers' ability to provide rich and in-depth data. The interviews presented a comprehensive description of how callers perceived their encounter with a rheumatology telephone helpline. Twelve callers declined to participate in the study for various personal reasons. Twenty-seven callers were interviewed by the same researcher, which strengthened credibility. The interviews took place 1-3 weeks after the phone call to RD. The questions in the semi-structured interview guide were developed in collaboration with RD nurses and based on their experience of such telephone calls. One of the nurses was also a research partner, in addition to being a patient with 30 years' experience of rheumatoid arthritis. A limitation of the study was that the interview guide was not raised in cooperation with previous callers. However, the two pilot interviews demonstrated their relevance. The telephone interviews were characterized by openness and flexibility towards the callers. The fact that the interviews were conducted by telephone was also a limitation but this made it possible to interview all callers who agreed to participate, irrespective of where they lived. The analysis process was carried out in collaboration with all the researchers but without any external reviewers, which was a limitation in terms of deciding on perceptions and the categories.
However, dependability was strengthened by the fact that the researchers first analysed the data separately and then compared their findings. To strengthen confirmability, the researchers considered and critically reflected on their preunderstanding. The detailed presentation of the results, together with appropriate quotations, enhanced transferability. The researchers therefore consider that the results will be of interest to healthcare professionals and also to people suffering from rheumatic diseases.

| CONCLUSION
In the present study, the callers perceived their encounter with a rheumatology telephone helpline as a constructive dialogue based on specialized competence, and that the telephone helpline had applicability.
The constructive dialogue provided emotional support and a sense of safety. Being encountered with understanding and respect gave rise to satisfaction. The callers perceived that the nurse exhibited experience and skills, which enabled them to gain increased knowledge, described as valuable complementary information to that obtained from healthcare professionals or on the internet. The callers reported that it was easy to access the rheumatology telephone helpline whenever the need arose and that they were free to make their own decisions before, during and after contact. Further studies are needed to determine how phoning the rheumatology telephone helpline affects the caller in the long term and if such a helpline is a cost-saving resource for both the individual and the healthcare system.