Living with chronic pain: Patients' experiences with healthcare services in Norway

Abstract Aim To explore the experiences with healthcare received by people living with chronic nonmalignant pain in Norway. Design A descriptive and explorative qualitative design. Methods A total of 18 individual semistructured interviews was conducted in 2015. Qualitative content analysis was applied. Results The findings revealed challenges related to a multifaceted pain condition. Participants described interactions with a supportive health care where being listened to, believed in and experiencing mutual trust were emphasized. When interactions with healthcare professionals made the participants feel insignificant, they found it difficult to express their needs, which seemed to reinforce practical difficulties and unfulfilled expectations and make them lose hope in their recovery. This implies the importance of a holistic understanding of and support for more person‐centred practice to accommodate patients' expectations and expressed needs. Here, the nurses have an essential role in having a positive impact on future healthcare services.

However, because of the limited number of physicians who are pain specialists, people with chronic pain are still treated mainly in primary health care (Gatchel et al., 2014;Harle et al., 2015). General practitioners often report frustration when caring for patients with chronic pain because of time constraints and their limited expertise in pain care (Gatchel et al., 2014). An estimated 40%-60% of patients with chronic pain experience unsatisfactory management of their pain condition (Breivik et al., 2006). People with chronic pain often have little observable physical pathology or adverse laboratory findings, so treatment can be challenging to manage in a medical context (Bendelow, 2013). A biopsychosocial approach could be a more appropriate way of understanding the complexity of chronic pain and its treatment. The biopsychosocial model is based on a holistic understanding of illness, where pain is best viewed as the result of a complex interaction of physical, cognitive, emotional, behavioural and social factors (Engel, 1977;Turk, 2003). Studies have shown that greater hope and acceptance are associated with less psychological distress, functional disability and pain (Creamer et al., 2009;Peleg, Barak, Harel, Rochberg, & Hoofien, 2009). Although there are numerous conceptualizations of hope, there is agreement on its essential characteristics: coping, being future oriented and multidimensional (Raleigh, 2000). Pain acceptance implies accepting what cannot be changed, reducing unsuccessful attempts at eliminating pain and engaging in meaningful activities despite pain (Vowles, McCracken, & O'Brien, 2011). Thus, the unique way of pain acceptance and hope contribute to individuals' adjustment to chronic pain remains to be determined (Wright et al., 2011).
Recent research on chronic pain management has focused on measuring performance and effectiveness. Less attention has been paid to patients' expectations of and experiences with healthcare services.
The patient experience refers to the quality and value of all interactions in the entire duration of the patient-provider relationship (Wolf, Niederhauser, Marshburn, & LaVela, 2014). This means that the patient experience represents a continuum of care, from the first phone call to the patients being discharged. A deeper knowledge of patients' point of view has the potential to help transform health care for the better (Green & Hibbard, 2012;Richards, Coulter, & Wicks, 2015). Therefore, the aim of this study was to explore the experiences with health care received by people living with chronic nonmalignant pain in Norway.
Two research questions were formulated: • How do patients with chronic pain experience healthcare services?
• What expectations do the patients express in relation to their health care?

| Design
We used a qualitative approach with a descriptive and explorative design. A total of 18 semistructured interviews was conducted to capture the individuals' experiences. Sixteen women and two men from across Norway participated in this study.

| Sample selection
Individuals with chronic nonmalignant pain were recruited in collaboration with a Norwegian patient organization for people living with chronic pain. Consistent with the guidelines of the patient organization, we released information about our study and our contact information. This information was published in the patient organization's official website, on its Twitter feed and a notice was placed in its printed magazine. People who were willing to participate emailed a request and the first author (KG) responded within 1 week by email or telephone. Thereafter, the participants were emailed information about the study along with inclusion criteria and an informed consent form. If they still wished to participate, KG made sure that the participants met the following inclusion criteria: age 18-67 years, nonmalignant pain >6 months, the pain condition as a primary disorder and living at home (outpatients). An appointment for conducting the interview was then made. A total of 25 people were contacted; six were excluded due to age and/or because they were suffering from a malignant pain condition and one withdrew in advance of the interview for an unknown reason. Thus, 18 patients (16 women and 2 men, aged 18-67 years) with pain conditions such as fibromyalgia, muscular pain and chronic nonmalignant pain were included (Table 1).

| Data collection and analysis
The interviews were conducted using a semistructured interview guide and lasted 55-75 min. The researcher provided some structure based on the interview guide but allowed rooms for the participants to offer more spontaneous descriptions and narratives.
The topics in the interview guide were: everyday life with chronic pain, care-specific challenges and experiences with offered health care. Each participant was given a choice to conduct the interview at his or her home or elsewhere (e.g. a conference room).
Ten participants were interviewed at their home, six patients at a conference room in a hotel and two interviews were conducted in a conference room at the first author's workplace. All participants agreed to have the interview tape-recorded. The interviews were analysed using qualitative content analysis as presented by Graneheim and Lundman (Graneheim, Lindgren, & Lundman, 2017;Graneheim & Lundman, 2004). The analytical process transpired in six stages as outlined in Table 2. Qualitative content analysis focuses on subject and context and emphasizes variation, such as similarities and differences between parts of the text (Graneheim et al., 2017). Consistent with a hermeneutic phenomenological point of view, we strived to be close and connected to the study participants to elicit meanings in the data using various degrees of interpretation. An overview of subthemes abstracted into themes is shown in Table 3.

| Rigour
To ensure a trustworthy study, we used the credibility, transferability, dependability and conformability criteria as presented by Lincoln and Guba (1985). To enhance the credibility of the data collection, the same researcher conducted all interviews. The findings were critically interpreted to create a comprehensive understanding and were elaborated in the light of existing literature and the applied biopsychosocial model. The inclusion of 18 individuals from across Norway with various pain conditions and various health care experiences reinforced the credibility, as the participants offered comprehensive descriptions of the issues examined. Table 2 provides a detailed description of the analytical steps. In addition, Table 3 shows TA B L E 2 Stages of the analytic process an overview of the subthemes abstracted into themes. Overall, this may strengthen the credibility and dependability of our findings.
The transferability of our findings is enhanced by using quotations from the data along with detailed descriptions of the participants.
Our findings may be transferable to other professionals or people in similar situations by considering the patients' culture and context, as well as methods of data collection and analysis. Recognition of the shortcomings in the study to ensure conformability is outlined in the section: Strengths and Limitations.

| Ethics
The study was approved by the Regional Committees for Medical and Health Research Ethics, Norway (Project number 2014/2165).
Every participant provided informed written consent before the interview. All participants were informed both in writing and verbally about their rights to withdraw at any time and that their participation was anonymous.

| RE SULTS
The participants had experiences with primary health care, from specialist care settings including pain clinics and from stays at rehabilitation units. This made it difficult to distinguish among the different types of healthcare providers or professions involved. The findings are therefore presented with a focus on healthcare professionals in general. Through the analysis, two themes were developed: "Feeling acknowledged as a person in the healthcare services" and "Feeling neglected as a person in the healthcare services". In the following, the two themes are presented, and quotes are provided to give the participants a clear voice.

| Feeling acknowledged as a person in the healthcare services
Feeling acknowledged as a person was characterized by being taken seriously, getting practical and emotional support and having be- The need to attend a rehabilitation programme was emphasized.
Pain rehabilitation taught people to be patient, to be careful with physical activity and to know their body much better. The participants experienced that their condition was properly addressed at the rehabilitation unit. These findings indicate that living with chronic pain can be very demanding and that emotional support from healthcare providers is essential. The participants communicated a sense of a strong relationship and good teamwork with their healthcare professionals. Continuity with professionals who knew their life story was also The participants described living with chronic pain as demanding and expressed feelings of hopelessness related to an inadequate healthcare system. Participants stated that their lived experience of illness was neither respected nor of any significant value in the care situation. They described this lack of recognition as destructive.
Hopelessness was also related to the feeling of being a low priority in the healthcare system:

| D ISCUSS I ON
Our aim was to explore the experiences with health care received by people living with chronic nonmalignant pain in Norway. Two themes were developed through the content analysis. The following discussion is arranged according to the dichotomous themes: "Feeling acknowledged as a person in the healthcare services" and "Feeling neglected as a person in the healthcare services" to contrast the different experiences.
Participants described some satisfactory interactions with a supportive standardized health care where they were taken seriously. Emphasis was placed on the importance of being listened to, believed in and experiencing mutual trust, when their illness was considered as valid and important. According to Cissna and Sieburg (1981), interpersonal confirmation highlights the elements of existence, confirming: "to me you exist," "we are relating," "to me you are significant" and "your way of experiencing your world is valid" (Cissna & Sieburg, 1981 p. 259). Although confirmation has long been identified as crucial in forming and maintaining any human relationship, it has received the most attention in clinical or psychotherapeutic settings (Cissna & Sieburg, 1981).
This behaviour in a healthcare context, like our findings, could influence the interactions between patients and healthcare professionals in such a way that the patients feel valuable and thereby confirmed. Models of nursing, regardless of their philosophical underpinnings, have prioritized the importance of relationships (Watson, 1997). A qualitative systematic review investigated the patient-professional relationship and stressed the patients' need to be understood and their expectations towards health professionals for understanding their pain and life situations (Fu, McNichol, & Marczewski, 2015). The quality of these relationships is mentioned in patient satisfaction surveys as being of particular importance (Wiechula et al., 2016). As we see it, the patients' relationships with healthcare workers appears central to the quality of the patients' healthcare experience.
When the participants were taken seriously in their interactions with healthcare providers, they described increased practical support such as being referred to pain centres or stay at rehabilitation units. When their illness was validated in these interactions, they also described emotional support, which seemed to make them feel more optimistic. Patients' satisfaction with chronic pain management can be seen as the result of the match between expectations and subsequent experiences (Geurts et al., 2016). Meeting patients' expectations should result in consistency between patients' needs and healthcare delivery, resulting in greater satisfaction with care (Barbosa, Balp, Kulich, Germain, & Rofail, 2012). Satisfaction with care might increase compliance, which may then improve pain management outcome (Nicholas et al., 2011). We suggest an increased awareness in identifying the patients' needs and expectations to enhance healthful relationship during consultation.
However, it is important to stress that all participants experienced inadequate interactions with an often impersonal healthcare system. The participants described disconfirmation, based on their impression that healthcare workers invalidated their lifeworld and illness experience. The participants seemed to equate this lack of confirmation with a lack of interest. Patients want confirmation that their chronic pain is "real" and want to feel empowered through access to reliable information on best practices (Dewar, Gregg, White, & Lander, 2009). As such, an increased focus on confirmation in the dialogue between patients and healthcare workers seems vital to diagnostic and therapeutic processes as it forms the basis for this relationship.
The participants experienced lack of recognition, as they struggled to be believed and taken seriously. Unsupportive encounters in healthcare settings where the patients felt accused of exaggerating or imagining their illness due to the lack of observable signs of disease were highlighted, consistent with previous studies (Håkanson, Sahlberg-Blom, & Ternestedt, 2010;Lehti et al., 2016). Werner and Malterud (2003) found that women with chronic pain struggle to fit in with normative biomedical expectations by trying to act credible in their encounters with healthcare providers. We agree with the argument that many of the attitudinal problems are linked to the predominance of acute care models, which dominate most healthcare levels where people with chronic illness are found (Thorne, 2006).
Chronic pain is a complex phenomenon resulting from biological, psychological and social factors, all of which are relevant to pain management (Engel, 1977). This biopsychosocial approach, presented by Engel in 1977, does not abandon the biomedical model but rather extends it (White, 2005). Although the biopsychosocial approach is widely accepted, the corresponding introduction of multidisciplinary pain clinics employing specialist treatments tailored to individual patient needs has not always followed (Kress et al., 2015). A review of stakeholder groups revealed several reasons for this, including rushed consultations and pain management having a low priority and being underresourced (Kress et al., 2015).
Pain management, which should be multidimensional, often depend primarily on pharmacology, which in itself are presenting patients and the healthcare system with enormous challenges (Penney, Ritenbaugh, DeBar, Elder, & Deyo, 2016). Prescription for opioid medications for chronic pain has increased dramatically and is associated with increased opioid overdose, abuse and other harm in addition to uncertainty about long-term effectiveness (Chou et al., 2015). Along with the rise in opioid prescribing for pain management, concerns about the limitations and efficacy of this treatment have increased. Furthermore, the clinical milieu has emphasized the importance of treatment focusing on improving patients' functioning rather than pain reduction (Ballantyne & Sullivan, 2015). We underline the importance of an increased focus on the challenging shift from cure to care in chronic pain management, as this might contribute to a more person-centred approach to treatment earlier in each patient's trajectory.
The participants described feelings of hopelessness and resignation when experiencing unfulfilled needs and expectations.
Inadequately managed pain can have adverse physical and psychosocial patient outcomes for individual patients and their families (McCormack & McCance, 2017). Not being seen and the inability to escape from pain may create a sense of helplessness and hopelessness. The participants highlighted the importance of healthcare professionals in maintaining and respecting their future hope of recovery. Hope can enable patients to cope with a stressful situation by expecting a positive outcome. In turn, because a positive outcome is expected, patients are motivated to act despite uncertainty (Rice, 2012). Recently, there has been growing recognition that positive psychological factors, for example pain acceptance, hope and optimism may be related to how individuals adjust to chronic pain (Wright et al., 2011). Studies identify the role of   pain acceptance as an important predictor of pain adjustment, pain-related disability and to less psychological distress (Elander, Robinson, Mitchell, & Morris, 2009;Goodin & Bulls, 2013). Thus, current pain practice encourages acceptance of chronic pain, rather than the ongoing search for a cure (Dewar et al., 2009).
However, present findings indicate that patients might not respond positively when told to accept their situation and live with the pain. Given this message, the participants interpret the healthcare professionals' focus on 'acceptance' as meaning that their search and hope for relief should end; as a result, the participants then seemed to lose hope and give up. This is in line with previous research, which revealed that women living with arthritis and fibromyalgia rejected the term 'acceptance' (Lachapelle, Lavoie, & Boudreau, 2008). The rejection reflects the woman's beliefs that acceptance is resignation (Lachapelle et al., 2008

| S TRENG TH S AND LIMITATI ON S
The term "information power" guides sufficient sample size in qualitative studies (Malterud, Siersma, & Guassora, 2016). The size of a sample with sufficient information power depends on the purpose of the study, specific aim, use of established theories, dialogue quality and analysis strategy. Information power in this study was influenced by a specific aim (experiences with health care) with dense specificity (patients' experiences), along with the applied biopsychosocial model. The first author conducted all interviews and a thorough qualitative content analysis was performed (Graneheim & Lundman, 2004). Thus, 18 informants from across Norway included rich and nuanced descriptions of the phenomena and the data had satisfactory information power to develop valuable knowledge related to our aim.
This study has the following limitations. First, all participants were recruited from a patient organization and thereby represent those who were willing and able to join such associations. Second, the study sample had 16 women but only two men. It is uncertain whether men are less willing to talk about pain or whether men are less likely to seek health care for pain. However, this mirrors the actual distribution among those with chronic pain, where women are more often diagnosed with a chronic pain condition than men (Bartley & Fillingim, 2013). Third, we did not reveal any obvious differences in experience by age group. However, this could be an interesting dimension in further research and discussion.

| CON CLUS ION
Our findings stress that it is vital for individuals with chronic pain to have their illness experiences and lifeworld considered as valuable. This study provides new and extended knowledge, indicative of a need for greater recognition of the patient's lifeworld and expectations in chronic pain management settings. Our participants experienced challenges related to their multifaceted pain condition. This implies the importance of holistic understanding and support for more person-centred practice to accommodate patients' expectations and expressed needs. Here, the nurses have an essential role in having a positive impact on future healthcare services.

| CLINIC AL IMPLIC ATIONS
Nurses should be at the forefront of achieving a biopsychosocial approach to pain management, in accordance with person-centred care. To achieve genuine person-centred practice, we suggest that

ACK N OWLED G M ENTS
We thank the informants who volunteered to participate in the study, and the Norwegian patient organization "Foreningen for kroniske smertepasienter" for outstanding collaboration. We express our gratitude to Ulla H. Graneheim and Britt-Marie Lindgren, Umeå University, for their hands-on and constructive feedback during the qualitative content analysis.