Involvement of relatives in chronic non-malignant pain rehabilitation at multidisciplinary pain centres: part one – the patient perspective

Design

The study applied a qualitative design conducting individual patient interviews to obtain rich and in-depth information by providing a possibility to explore sensitive and intimate subjects regarding the patients’ perspective on the involvement of relatives [26], [27].

Definition of a relative

According to dictionary.com, a relative is “a person who is connected with another or others by blood or marriage” [28]. However, in this study, the term relative is more widely understood in line with Wright and Leahey’s definition of family as a group of individuals who are bound by strong emotional ties, a sense of belonging, and a passion for being involved in one another’s life: ”The family is who they say they are” [29]. With this definition, the perception of relatives goes beyond connectedness by genetics or law and allows openness to the patients’ notion of relatives. Still, the term relative will be used throughout the text, since the Danish word for relative [pårørende] is associated with the intended comprehensive understanding, as described by the Danish Health Authority [30].

Sample

In Denmark, the healthcare system is generally universal, with free and equal access for all citizens. The interdisciplinary rehabilitation of patients with complex CNP takes place at Multidisciplinary Pain Centres (MPC). Patients from three Danish MPC participated in the study to provide patient experiences from various contexts. The selection of the MPC was based on their location in the eastern and central part of the country and multidisciplinary profile, requiring employees such as physicians, nurses, physiotherapists, psychologists, social workers and secretaries. The inclusion criteria for patients were: age ≥18 years, Danish-speaking, cognitively able to participate in an interview, rated by the contacting author as not atypically coherent. The recruitment applied a convenience, yet purposive sampling strategy with a consecutive inclusion, aiming to achieve a wide range of variation in backgrounds to represent the variety among patients with CNP [31], [32]. Data saturation was reached after eight interviews. As a precaution, two additional interviews with already invited patients were completed leading to 10 interviews in total comprising rich and in-depth information having high information power in accordance with the model by Malterud et al. [33]. The interviews were evenly distributed among the MPC with three or four patient interviews from each MPC [32], [34]. The informants included seven women and three men, reflecting a well-known overrepresentation of women among patients suffering from CNP [10], [35], [36]. The age range was 18–78 years. Table 1 provides an overview of the participants.

Procedure

Permission to recruit patients was requested from the selected MPC by sending an email to the respective head consultants and charge nurses with information about the study purpose and practical issues. The patients were contacted in the waiting area at the respective MPC by author one or two, in agreement with the management and staff, who were helpful to inform about the authors’ presence and confirm the recruitment permission. Patients who consented were immediately orally informed about the study and received a written information leaflet describing the study background, purpose and ethical rights. Both the oral and written information emphasised that participation was voluntary and could be terminated anytime without consequences for the patient. Likewise, the perception of relatives understood as any close and supportive relationship was pointed out. Those who were interested and consented to be contacted gave their names and phone numbers and were contacted shortly after for further planning of a potential interview unless the patient wanted to arrange an appointment immediately. All interviews were conducted in January 2018 as a conversation between author one or two and the patients using a semi-structured interview guide to ensure consistency and flexibility in the exploration of the study aim [27]. An opening question allowed the patients to talk freely about experiences, needs and preferences regarding the involvement of their relatives, and a question asked whom the patient considered as close relatives. The conversation followed the issues unfolded by the patients. At the same time, the subsequent questions in the interview guide served as a guideline to elaborate in each area. The interview guide was approved by all the authors, who agreed that using it should balance between the defined questions and pursuing what was told by the patient. The interviews were offered to be held at the MPC or the patients’ home as they preferred. For practical reasons, the patients from one of the MPC were interviewed at the MPC on a specific date. One interview was carried out in the informant’s private home, while the remainder was carried out at the MPC. The interviews lasted for up to 77 min, with a mean time of 52 min (see Table 1). The interviews were audio-recorded and transcribed verbatim.

Analysis

The study had a qualitative phenomenological-hermeneutic approach guided by Paul Ricoeur’s philosophy of interpretation of the text [37], [38] to allow openness towards the informants’ experiences, needs and preferences regarding the involvement of relatives. Analysis of data comprised three levels of interpretation: Naïve reading, structural analysis and at the final level a critical interpretation and discussion [37], [39] (Table 2 provides an overview of the levels of analyses). The transcribed interviews formed a complete text read several times. The structural analysis was a dialectical movement between parts and the whole while following what the text said, what was reflected upon, to understand and interpret the text [38]. Significant units emerged. These units validated and adjusted the naïve understanding, and key themes and sub-themes were developed. During the critical analysis, the dialectical process between explanation and comprehension continued via a discussion of other research findings, emphasising the interpretation level.

Table 2:

Levels of interpretation when proceeding a Ricoeur analysis.

At the time of the data collection and analysis, the interviewing authors served as respectively, clinical nurse specialist and nurse at one of the MPC. Awareness about the interviewing author’s preconceptions concerning their distinct positions as employed at an MPC characterised the process of interviewing. None of the authors had a professional relation to the informants. To strengthen the study design and qualify the analysis, the researcher group collaborated throughout the analysis process to obtain a comprehensive perspective, enhancing rigour and trustworthiness [27], [32], [34]. Several naïve readings of the entire interview text were carried through by all the authors, who contributed equally to the structural analysis and development of themes and sub-themes. The critical interpretation and discussion were approved through frequent debates between the first author and the entire author group. The reporting of the study has sought to meet the recommendations of consolidated criteria for reporting qualitative research (COREQ) [40].

Ethical

The Danish Data Protection Agency approved the study (J.no. RH-2016-179 I-Suite no 04737). The informants received written, and oral information and verbal informed consent were obtained before each interview [41]. The researchers did not have access to the patients’ identification numbers or medical files. The informants were anonymised during the transcription. Thus, anonymity was ensured throughout the analysing process and in all forms of reporting of the findings.

Involvement of relatives being interpreted in various ways

In the chosen context of CNP rehabilitation, different kinds of scenarios were perceived as involvement by the informants. For some, it meant bringing the relative(s) to the appointments at the MPC. Other informants understood the involvement of relatives, as when, while at home, they tried passing on knowledge given by the pain specialists if the relatives did not attend the meeting. One patient expressed:

“My husband knows about what’s going on, and he always backs me up, but it is still my decision how to go about things. Ultimately, it’s me who has to decide what I want. He gets involved through me and what I tell him.” Informant 2.

This patient considered the activities at the MPC as supporting everyday life, to which she did not ascribe crucial importance. On the other hand, her husband attended appointments in other healthcare settings discussing pain-relieving surgery, which both of them regarded as significant. Other informants again perceived the involvement of relatives as having a formal offer from the MPC. Thus, the patients’ perception of the involvement of relatives was ambiguous and varied on a continuum between occasional involvement depending on the patients’ initiatives and structured involvement initiated by the MPC. The vague perception of what the involvement of relatives captured made it unclear for some patients what they could expect or demand regarding the involvement in their CNP rehabilitation trajectory. A female informant realised during the interview that she wanted her husband to participate in the appointment with the physician, but first, she wanted to ask the staff if it was all right. Another informant had some marital challenges related to her CNP. She could not afford private marriage counselling (not supported by the Danish healthcare system), but she doubted whether the MPC should offer some help to cope with these problems. One MPC offered an information course, where some of the patients had participated together with their relatives. For some of the patients, the course had been helpful. However, one informant questioned whether participating in a course could be described as involvement and reflected upon whether the level of information was too high for some participants:

“When we went to this [information course] it was almost like being in high school again (…) when you have a diverse group from the society, it is important to target the common denominator and not aim much above that” Informant 4.

The ambiguous and unclear notion of what the term involvement captured revealed that the involvement of relatives in chronic pain rehabilitation at the MPC was considered superficial by the patients with a vague understanding of the substance and imprecise expectations, mainly due to a lack of experiences.

Experiencing the involvement of relatives as having a beneficial impact

In the chosen context of CNP rehabilitation, the informants had primarily experienced involvement if they brought their relatives to specific appointments. All the MPC had structured offers for the involvement of relatives. However, several of the patients did not participate, and some experienced cancellations. A female patient noted:

“They had a course for relatives, my husband and I were enrolled, but it was cancelled because there were too few participants. Instead, the physician suggested that we could have an appointment with the psychologist” Informant 1.

This patient had a compensating appointment, but another patient, who was prevented from participating due to hospitalisation, did not get a similar offer, thus indicating that it was not a standard procedure. Consequently, it seemed coincidental which patients had their relatives involved and how it was carried out. When the involvement of relatives had somehow taken place, patients experienced that it was beneficial for their relationships as well as their ability to handle the CNP. One patient stated that, after participating in an information course, her husband started to understand the chronicity of her CNP. Before this, he thought it would be cured at the MPC and could become annoyed when the patient still was in pain. Understanding the persistence of CNP seemed to be a common challenge for the relatives, who, instead of containing the illness, had a desire to resolve it. Thus, professional explanations were experienced supportive by the patients due to the transforming of the relatives’ ‘fix-itʼ way of thinking, which enabled the relatives’ collaboration on the patients’ struggles to accept CNP as a condition of life.

However, the benefit of the involvement of relatives was not given for all patients. Due to the unsystematic organisation, incidents of the involvement as a part of the patients’ rehabilitation became dependent on each patient’s resources to be aware of the need and the ability to demand it. Not all patients were able to define their need for involvement of relatives. A male patient was reluctant to formulate his specific need but claimed that he was dependent on his wife, which indicated that he was in a vulnerable position and needed her support to cope with the CNP. He had participated in a structured education programme with his wife in another healthcare setting and could imagine something like that for CNP. He observed:

“Three years ago, I got diabetes, and I [and the patient’s wife] came here to the hospital for a course, it lasted for four days. It helped me a great deal, and if there were anything like that around concerning pain, that would be great, it really would” Informant 8.

Still, this patient did not realise the advantage of the diabetes course until afterwards, indicating that he would not proactively seek out such an offer on his own.

Being socially disabled by the chronic non-malignant pain condition

The interviews illuminated that patients experienced a thorough impact on their relationships due to the consequences of their CNP, which made the arbitrary involvement of relatives critical. When the patients pointed out their close relatives, they were all related by law or genetically, thus corresponding to the traditional perception of relatives, and primarily consisted of spouses/cohabitants and children varying from small to grown-up. One participant mentioned her parents, especially the mother, and one participant also considered his ex-wife as a close relative, though this relationship was troublesome to handle for his current wife. The more superficial acquaintances included friends, neighbours and colleagues, but also genetically related relationships, from which some of the patients had distanced themselves because of a lack of understanding of their CNP. One patient with a minimal circle of acquaintances experienced that the relationship with his siblings had also become strained, stating:

“I don’t really have any friends, as such. My siblings are there, but I don’t see them a lot. I find it hard to understand that they don’t consider me to be reliable. If I cancel on them or am in pain, they take it personally, as if I don’t want to be with them” Informant 7.

The patients experienced that their superficial acquaintances were threatened and at risk of fading away, since participating in social activities was challenged by a decreased functional level. The patients’ experience of disbelief and lack of understanding from their peripheral acquaintances was a repeated issue explained by the invisible and varying nature of CNP. The patients experienced that their suffering was called into question, which, for some, led to voluntary social withdrawal. Due to the loss of peripheral acquaintances, the patients became more reliant on their close relationships. However, these were experienced as being under pressure as well. Between partners, the balance was disrupted since the patient was not able to contribute to the household on equal terms. One patient observed:

“It’s hard for my husband because now he has to do 75% of the housework. He also has to take it when I am tetchy and snap at him because I’m in pain” Informant 5.

This quotation showed that the partner besides being overburdened with household duties he also had to contain “unreasonable” reactions from the patient, leading to a negative influence on the relationship. This specific husband had told the patient that the CNP could result in a divorce. Due to the high degree of strain, it seemed to be particularly challenging for couples with children living at home to handle the changed life circumstances due to CNP, whereas older couples appeared being better prepared to deal with the transformations. New relationships, where CNP was a premise from the beginning, also seemed to be less affected. However, most of the patients had experienced that living with CNP somehow influenced their relationships.

Being unaware of the family need for mutual understanding

The text showed a common need for the involvement of relatives. For some, the need was experienced as vague or limited. One patient maintained throughout the interview that she did not need to get her husband involved. In contrast, she reflected upon whether early involvement could have qualified their decisions of modifying her exhausting working life, based on considerations about the economic possibilities. For other patients, the involvement of relatives was perceived as lifesaving for the family’s healing process. A patient claimed:

“I would say that, if later on, we live together, I think they [his relatives] should be involved. If not, I don’t think it will turn out so well. There should be a service for relatives. You might say that there is no room for it [in the MPC], but actually, I would say that there’s no room to leave it out” Informant 6.

In such cases, the need for involvement of relatives in pain rehabilitation became existential, which primarily seemed to appear when patients experienced high pressure in everyday life, but also changeable or absent understanding from relatives. A patient stated:

“I think the relatives need to get a better understanding of what it is like to suffer from chronic pain. It would be nice if, with help from the healthcare staff, they could be aware of the challenges a chronic pain patient experiences because it is difficult for me to explain to my husband or other people” Informant 3.

This quotation illustrated several common issues. The nature of CNP was troublesome for the patients to pass on to the relatives and needed to be communicated by a professional pain specialist, who could translate the impact of the illness and add legitimacy.

From the patients’ perspective, the involvement of relatives primarily needed to increase the relatives’ understanding of the patients’ everyday struggle to manage the CNP. However, the text revealed a need for mutual understanding. One male patient demonstrated due to previous experiences a sophisticated perception of his relatives’ needs by reflecting upon the importance of relatives to create some space for themselves to endure the burden of being a relative. Otherwise, the need for mutual understanding was conspicuous by its absence and revealed that the patients hesitated to acknowledge their relatives’ need for recharging, despite being aware of their struggles. A similar need for mutual understanding occurred regarding children. Despite parents’ concern for long-term consequences of growing up in a family influenced by CNP, they somehow expected their children being able to understand the premise of CNP calling for guidance to understand and handle their children’s reactions.

Demanding equivalent priority between the involvement of relatives and the analgesic treatment

There seemed to be a contradiction between the patients’ experienced need for involvement and the actual services in the chosen context of CNP rehabilitation. There was a lot at stake for the patients’ relationships, which gave rise to worry about the described arbitrary involvement of relatives. The revealed impact of CNP on relationships with both adults and children advocates for systematic involvement due to the identified need that some patients indeed experienced as lifesaving. The patients addressed this need as a preference for mandatory involvement initiated by the MPC:

“It would be good if you were obliged to bring a relative. I definitely think it could help; it has helped me an awful lot in any case. If I were older, I am not sure that I would bring a relative, unless it was recommended or preferred [by the MPC]” Informant 10.

This informant was very young and used to bring her mother to the appointments. She reflected upon, whether she, as a formally adult person, was supposed to handle her illness trajectory herself but resonated that she preferred to share the responsibility. Mandatory involvement of relatives could incite involvement for patients having a vague notion of their needs or being insecure about how to navigate in the system. Likewise, in other cases where patients experienced that their relatives did not give priority to participate in meetings at the MPC, thus missing the opportunity to get a shared understanding for management of CNP in everyday life. One patient experienced, that support from her boyfriend made her able to maintain her functional level despite the CNP, and she ascribed significant meaning to the involvement of relatives:

“If it were optional, I’d prefer that the relatives coming in with you was given the same importance as ringing you up to find out about the effect of the medicine” Informant 4.

The above quotation captured the experienced need for giving a higher priority to the involvement of relatives as a part of CNP rehabilitation. The patients preferred that the involvement of relatives received more than just sporadic attention, which permeated the text, and by this informant was expressed as a preference of equalising involvement and analgetics.

Expressing the need for involvement of relatives in multiple ways

The text elucidated a shared preference for mandatory and structured involvement of relatives as a part of CNP rehabilitation, but the wishes for the specific design differed. Overall, there was a preference for face-to-face rather than, for instance, internet-based involvement, though the timesaving and flexible benefits were acknowledged. However, differences in digital literacy were a frequently stated issue as a barrier to usage. Written information was also experienced as a reasonable and helpful way to communicate the nature of CNP to, for instance, the employer and colleagues.

From the patients’ point of view, face-to-face involvement should be organised as either group participation, where several patients could bring their relatives or individualised involvement, targeted the specific patient and her/his selected relatives. The patients’ preference for involvement in groups was related to a need for meeting other people with the same challenges and somehow connected with previous positive experiences from different contexts with group participation. A patient who had participated in a group with her relative due to another illness said:

“I’d prefer that there was a group. They could learn that there are other people who are also struggling with this. And how they have tried to tackle it” Informant 9.

The possibility of being mirrored in peers with equalised problems and meet sympathy and understanding without further explanation seemed to be essential for the preference of participating in a group. However, another portion of the patients could not imagine having their relatives involved in a group of unknown persons. They were too private and found it intimidating to give them away; one female patient claimed:

“I actually think involvement only with your own relatives would be the best because sometimes it could be hard to express what you really mean in a group with other [unfamiliar] people” Informant 10.

Besides a privacy preference, some patients were too vulnerable to be confronted with additional issues from other patients in a group. For other patients, the likeness in a group needed to go beyond the diagnosis of CNP. They wanted the involvement targeted to their specific issues and cause of CNP. However, the patients’ preferences could not be divided into either group participation or individualised involvement. Between these two poles, diversity and a wish for combined methods characterised the desires for the involvement of relatives. Thus, the specific offers of involvement of relatives from the patients’ perspective should be mandatory and structured and yet individualised adapted and tailored for the particular patient’s needs.

Overview of findings

Our findings illuminated that patients attending CNP rehabilitation had a vague perception regarding the meaning of involvement of relatives, reflecting their sparse experiences. It seemed arbitrary, who was offered involvement of their relatives and somehow connected with the patients’ ability to pick it out. Unstructured involvement was troublesome, due to a sometimes-heartrending impact of CNP, leading to a loss of relationships related to the patients’ reduced functional level and emotional fluctuations. In particular, patients with children living at home were under pressure, and parents worried about the consequences for children growing up influenced by parental CNP. In cases where the involvement had occurred, it was experienced as beneficial. Thus, a shared need for mandatory and structured involvement in CNP rehabilitation, tailored to the specific patient and her/his relatives was revealed.

Implications

Interventions conducting individualised adjusted involvement of relatives in the rehabilitation of CNP are assumed to improve patient’s management of CNP in everyday life. Structured FSN conversations may be a relevant proposition for such an intervention. Research in other illness areas found that interventions based on FSN reduced symptom burden and social limitations, and improved self-efficacy and family support, function and well-being [58], [59], [60]. FSN is yet unexplored in a population of patients with CNP, and research needs to shed light on whether an intervention with FSN is a useful way to involve relatives in a population of patients suffering from CNP.