Patients’ needs and expectations with regard to rheumatology nursing care: results of multicentre focus group interviews
- Yvonne van Eijk-Hustings1,
- Judy Ammerlaan2,
- Hanneke Voorneveld-Nieuwenhuis3,
- Bertha Maat4,
- Conny Veldhuizen5,
- Han Repping-Wuts6
- 1Department of Integrated Care/Rheumatology, Maastricht University Medical Centre, Maastricht, The Netherlands
- 2Department of Rheumatology, University Medical Centre, Utrecht, The Netherlands
- 3Department of Rheumatology, Maasstad Hospital, Rotterdam, The Netherlands
- 4Patient Research Partner, Boskoop, The Netherlands
- 5Antonius Academy, Antoniusziekenhuis, Antonius Hospital, Utrecht, The Netherlands
- 6Department of Rheumatology, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands
- Correspondence to Y van Eijk-Hustings, Department of Integrated Care/Department of Rheumatology, Maastricht University Medical Centre, PO Box 5800, Maastricht 6202 AZ, The Netherlands;
- Received 10 October 2012
- Revised 23 December 2012
- Accepted 3 February 2013
- Published Online First 10 May 2013
Objective The contribution of rheumatology nurses to improved patient outcomes is increasingly recognised but more research is needed about the effects of interventions. The patient's role in deciding about healthcare quality is considered pivotal and therefore patients’ opinions and expectations should be directional in defining priorities for a research agenda. The objective of this study was to explore needs and expectations with regard to rheumatology nursing care in patients with chronic inflammatory arthritis (CIA).
Methods Patients aged 18–90 years from three medical clinics in different regions in The Netherlands were invited to participate in focus group interviews. The interviews were transcribed verbatim and independently analysed by the authors. In a consensus meeting the emerging subjects were categorised into themes which were verified in a fourth interview.
Results In total, 20 patients, mean age 57 years old, participated in the focus group interviews. The majority had rheumatoid arthritis and mean disease duration was 15 years. The focus group interviews revealed 12 subthemes that were organised into four main themes: education, self-management support, emotional support and well organised care. Additionally, patients considered opinions about ‘the personality of the nurse’ (eg, easy to talk to) to be important.
Conclusions Patients with CIA mentioned that many problems have to be addressed when one is faced with having a rheumatic disease. The focus group interviews yielded valuable information about the care these patients need and expect. This information will direct future research with regard to rheumatology nursing care.
Chronic inflammatory arthritis (CIA), more specifically rheumatoid arthritis (RA), ankylosing spondylitis and psoriatic arthritis (PsA), are characterised by inflammation, with a pattern of flares and low disease activity, and apart from pain and stiffness, patients can experience symptoms of severe fatigue.1 Increasingly, treatment focuses on remission or, if that is not possible, low disease activity.2 New treatment regimens have contributed to better outcomes but many patients still perceive an impact of CIA on their daily life.2–5
Apart from rheumatologists, other healthcare professionals, such as physiotherapists, occupational therapists and nurse specialists, are involved in the treatment and support of patients with CIA.6 The contribution of nurses to improved patient outcome in rheumatology is recognised, as reflected in the ‘European League Against Rheumatism (EULAR) recommendations for the role of the nurse in the management of CIA’.7 In the study of van Eijk-Hustings et al, 10 recommendations were formulated, seven of which focused on the contribution of nurses to care and management. This care includes monitoring of disease consequences on the level of daily activities, participation and psychosocial consequences and, in some countries, monitoring disease activity, drug treatment and drug side effects. Apart from the recommendations, the study also presents a research agenda, focusing on weak or lack of evidence about the contribution of nurses to outcome and the effects of nursing interventions in the short and long term.7
A patient centred approach is increasingly considered an important precondition for delivering high quality care and is considered a quality dimension.8 ,9 Many definitions exist but, in general, patient centred care is tailored to the individual's needs and preferences.9 The patient's perspective is considered pivotal in determining the required content and organisation of care, and also in decisions about quality of care. The increased focus on patient centredness reflects a revision of current epistemology ‘from evidence based to an evidence informed way of thinking and doing’.10
Rheumatology nursing is common in The Netherlands but the procedure for referral to the rheumatology nurse differs in different centres. Consequently, not all patients visiting the outpatient clinic will receive nursing care. A project group from V&VN Dutch Nurses’ Association, unit Rheumatology, was set up with the intention of formulating a national research agenda regarding the extent to which nurses contribute to the quality of care in rheumatology. Patient research partners were invited into the project group from the start, and were asked to bring their expertise and thoughts.11 ,12 Based on contributions from the patient research partners, it was decided that patients’ opinions about priorities for quality improvement should be the starting point and that patients should be directional in defining the scope and priorities for the research agenda.
Although the patient's perspective has been incorporated into the EULAR recommendations, patients’ expectations and needs regarding rheumatology nursing care were not explicitly reflected. The objective of this study was to identify these expectations and needs in patients with CIA in The Netherlands.
Patients and methods
A qualitative design was chosen to explore the patient's perspective.13 ,14 To identify the main themes for expectations and needs, three focus group interviews were organised. The focus group discussion is a valid qualitative technique where group interaction is explicitly used to generate data. Focus groups have proven to be helpful because they provide an interactive environment and allow participants’ experiences to be elicited in the context of discussion as participants query and clarify one another's statements and opinions.15 A fourth focus group interview was scheduled to check if saturation of the themes had been achieved (ie, if any additional themes emerged). The focus groups were conducted between August and December 2011.
For the first three focus group interviews, eligible patients were recruited from three large outpatient rheumatology clinics in different areas in The Netherlands. All patients were considered eligible for participation if they were: (1) aged 18–90 years, (2) diagnosed with CIA by a rheumatologist, (3) able to speak and read the Dutch language and (4) in contact (or have had contact) with a rheumatology nurse. Consecutive patients, 10 at each clinic, were informed about the study by the rheumatology nurse. All patients received a brief demographic questionnaire (eg, age, level of education and disease duration) and an information letter explaining the aim of the study. The patient's consent was obtained by filling out the brief demographic questionnaire. Patients for the fourth focus group interview were invited by one of the authors (HR-W).
Each focus group session was facilitated by an independent moderator (CV) as well as an observer (HR-W), both registered nurses but no longer in practice. To facilitate optimal interaction between participants, the moderator mainly posed open questions. A general introductory question was asked, followed by the broad question “what (nursing) care do you need to live your life with a rheumatic disease?”. Each focus group lasted for approximately 2 h. All interviews were audio taped and conducted in a quiet room at the clinics. Participants gave their permission to be tape recorded. The tape recorded discussions were transcribed verbatim. Field notes were made during or immediately after the interview to record non-verbal communication and interaction allowing for contextualising of the data.
Data were analysed using Krueger's ‘long table approach’.15 This is a structured method in which an independent content analysis is followed by consensus meetings of the project group. Three of the researchers (YvE-H, JA and HV-N) were appointed at the clinics where the first three focus group interviews took place. The written transcripts of the focus group meetings were copied and sent to a researcher, so that each researcher analysed the transcript of an interview from another clinic. After reading the transcripts and assessing the whole scope of the interviews, statements that provided information for the central research question were marked. The observer (HR-W) analysed all of the interviews using the same marking method. Subsequently, the project group evaluated and discussed the selected statements. If consensus regarding the importance or relevance of a particular statement was not achieved, the statement was omitted from further analysis. In a follow-up meeting, the statements were discussed by the project group and were organised into subthemes. After this discussion, the group decided on the main themes. The fourth focus group interview was scheduled after data analysis. The procedure for the interview was similar to the first three interviews.
The study was submitted for approval to the medical ethics committee of Maastricht University Medical Centre and was considered evaluation of daily practice. No further approval was required.
For each of the first three focus group interviews, four out of 10 invited patients consented to participate, whereas all invited patients for the fourth interview (n=8) consented. In total, 20 patients participated in the four focus groups, 15 women and five men. The main characteristics of the patients are summarised in table 1.
In the focus group interviews, patients mentioned many problems that have to be addressed when faced with having a rheumatic disease. These include physical symptoms, such as pain and fatigue, emotions such as sorrow and grief, psychosocial issues and insecurities about the future, such as the fear of becoming disabled, choices to be made regarding education, work, becoming pregnant and having children, and perceived limitations with regard to fulfilling social roles. In response, patients expressed the wish to cope with their disease and to be able to manage their own problems. Patients stated that they often felt capable of dealing with their disease by themselves. However, flares or changes in personal situations may affect their sense of coping, resulting in a need for support. They expressed many needs and expectations with regard to care in general, and to rheumatology nursing care. In total, 200 statements were extracted from the focus group transcripts. In the analyses, 12 subthemes for needs and expectations were defined which were then organised into four main themes: education, self-management support, emotional support and well organised care. In the fourth focus group interview, the main themes were verified: no additional themes emerged. The field notes did not reveal observations that influenced the results.
The distribution of the statements in the themes is presented in figure 1.
Regarding ‘education’, patients expressed their needs for appropriate, tailored and timely information about the disease, treatment and potential side effects. They also expressed their needs for education about potential self-management strategies, and their needs for practical information about assistive devices and health care facilities.
Regarding ‘self-management support’, patients expressed their needs for advice regarding dealing with limitations, and how to communicate with others about these limitations.
Regarding ‘emotional support’, patients expressed their needs for understanding, a listening ear, but also for clear and supportive communication. They stated the value of a listening ear from a professional in addition to support from relatives and friends; patients felt it was more convenient to share their problems with someone outside of their social environment.
In addition to their needs, patients also expressed expectations regarding the care they receive for their rheumatic disease. Patients expect well organised, well coordinated care that is easily accessible, in which knowledgeable professionals collaborate and communicate with each other. They emphasised the importance of having access to a contact person.
Patients stated that rheumatology nurses can address their needs and expectations as they are knowledgeable, work closely with the rheumatologist, have access to relevant information, have a relevant network for referral and are easy accessible, but that rheumatology nursing care is not always provided. Table 2 gives an overview of the themes, subthemes and illustrative quotes from patients for each subtheme.
Some extracted statements (n=8) did not fit the themes but were not omitted from further analysis as patients considered them important. These were statements regarding opinions about the ‘personality’ of the nurse, for example, “the nurse is easy to talk to”, “the nurse is empathic”, “the nurse considers me as a whole”. An example is expressed in this quote from a female participant: “They seem to have more time, or they are closer, I do not know, but I like that and it makes me feel very comfortable”. Female, RA, 56 years old.
In this study, we identified patients’ expectations and needs with regard to rheumatology nursing care in focus group interviews. We decided to start with this first step, based on the advice of the patient research partners in the project group.
Participants in the focus group interviews discussed the many needs they perceived during their journey to live with a rheumatic disease, which were organised into three main themes: education, self-management support and emotional support. They also expressed what they expected from healthcare, resulting in a fourth theme—well organised care. Participants stated that rheumatology nurses can address their needs and can meet their expectations.
In our study, the need for education was most prominent. Patient education is a planned process aiming to improve coping strategies and increase self-care abilities.16 ,17 Patients expressed the need for reassurance, which can be addressed by tailored information. Feeling insecure, feeling confused, fear of losing independence and feeling anxious because of potential risks all have an impact on daily life.18 ,19 Rheumatology nurses have been found to contribute to increased knowledge of the disease and treatment,20 which may contribute to reassurance but may also play an important role in improving self-management.21 ,22
Self-management support appeared to be important for patients. Patients explicitly expressed the desire to manage their own problems. Self-management support comprises many interventions, performed by many health professionals. It usually includes education, but interaction with psychosocial factors, such as coping strategies and motivation, should be taken into account.23 A variety of rheumatology nursing interventions focus on improving well being, coping skills and self-efficacy. The literature has shown that rheumatology nurses are likely to contribute to self-efficacy and to perceived control.24 ,25
Statements with regard to emotional support were also extracted from the focus group interviews. The psychosocial impact of rheumatic diseases is recognised.26 Patients in our study described emotional support such as understanding, a listening ear and supportive communication. They distinguished between social companionship from relatives and friends, and emotional support from health care providers, which are both associated with lower psychological distress.27 ,28 In our study, patients valued emotional support from a rheumatology nurse so that they did not overburden their relatives and friends.
Patients stated their expectations regarding the organisation of care. Knowledgeable professionals, important information, guidance, access to care and collaboration of professionals are indicators of quality of care from a patient's perspective.29 The contribution of rheumatology nurses to quality and continuity of care has been described previously.30
A strength of our study was the participation of the target population—patients with CIA—in all parts of the study. The contribution of the patient research partners was directional for the design and validated the results of the data analyses. Furthermore, each focus group interview started with an open question that elicited a broad discussion among participants. We think that this contributed to an optimal exploration of patients’ needs and expectations.
Some limitations need to be addressed. Although 10 patients per clinic were invited for the first three focus group interviews, only four patients per clinic decided to participate. The reasons for not consenting are not known. Despite the small number of participants, there was a wide variation in age and disease duration but we cannot exclude the fact that our findings may be limited. However, in the fourth focus group interview, the subthemes were verified and no other themes emerged, which suggests that saturation had been achieved. The inclusion criteria limited recruitment of participants to those patients that had contact with a rheumatology nurse. Access to rheumatology nursing care is not equally available in all countries. Our results may also reflect the opinions of patients that do not have access but this remains unclear.
Furthermore, from the participants in the focus groups, 18 patients had RA. Although education, self-management support, emotional support and well organised care may also be important themes for patients with inflammatory diseases other than RA, we do not know if the results would have been different if patients with other diseases had participated in our study.
The findings of this study will direct further research that will show if the themes that have been identified in the focus group interviews also represent the opinions of a larger group of patients. Disease specific components may be of special interest as well as a comparison of the opinions of patients that have access to rheumatology nurses with the opinions of patients who do not have access. Further research may focus on disease specific components in different European countries. Subsequently, the results will be used to assess if the care that is currently provided meets the needs and expectations of patients that may result in patient centred care improvement strategies.
In summary, the focus group interviews yielded valuable information and provided a structured overview about the care that patients with CIA in The Netherlands need and expect. This is a first step in defining patients’ priorities for rheumatology nursing care that can direct future research towards issues which are most relevant for patients.
We thank the patient research partners Bertha Maat, Marleen Bolech and Monique Lieon for their contribution to the design of the study and the development of the questionnaire on patient characteristics. Furthermore, we thank Linda Veldhuizen for transcribing the audio recordings. Finally, many thanks to the 20 participants in the focus group interviews.
Handling editor Tore K Kvien
Contributors All authors were involved in the conception and design of the study, and in the analysis and interpretation of the data. YvE-H and HR-W were responsible for drafting the article. All authors revised the manuscript critically for important intellectual content and approved the version to be published.
Funding This study was funded by V&VN Dutch Nurses' Association, unit Rheumatology.
Competing interests None.
Ethics approval The study was approved by the medical ethics committee of Maastricht University Medical Centre.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement The transcripts of the focus group interviews are available from HR-W or YvE-H.