The experience of meaningful rehabilitation as perceived by people with chronic pain: A phenomenological study

2.1 Study design

The study was performed from a constructivist/interpretivist paradigm. A qualitative phenomenological research design [36] was used to examine the experience of meaningfulness in rehabilitation for people with chronic pain. The first author (KL), who is a clinical and academic occupational therapist with pain management experience, conducted interviews and led the data analysis. The research was conducted as part of the first author’s doctoral studies and participants were made aware of this. The research team also included an academic-researcher with experience as a clinical occupational therapist (CB); and an academic-researcher with specialist experience in exercise science and motor learning and control (AR). To minimize researcher bias the lead researcher kept a reflexive journal, a qualitative research method used to examine the researcher’s own research practices, biases and assumptions and improve confirmability [36, 37]. To maintain rigor the research team carried out frequent in-depth debriefs regarding study design, iterative progress and emergent data [37].

2.2 Sample

Australian adults with chronic pain, were recruited during February to October 2020. Purposive sampling was used through social media, posters displayed on university campuses, and email via the primary researcher’s therapist colleagues, specialist pain management practices, and larger occupational therapy and physiotherapy practices. Participants were included if they were over 18 years; reported personal experience with chronic pain, described as pain lasting more than three months [38]; and had experience of physiotherapy or occupational therapy within the past 0-52 weeks. Exclusion criteria included those who were non-English speaking; actively attending rehabilitation at the time; and those with significant cognitive impairment. There was no predetermined sample size, as Braun and Clarke [39] recommend that sampling continues until no new themes emerge from the very detailed narrative data, in a process of ‘thematic saturation’ [39].

2.3 Data collection

Participants gave informed consent prior to completing the semi-structured in-depth interviews [36] which were conducted in person or via phone by the lead author, according to participant preference. Each participant was interviewed on a single occasion and interviews lasted between 45 and 75 minutes. A question guide was used and modified through an iterative process of concurrent data collection and analysis [40]. Examples of interview questions include:

Interviews were recorded using a data recorder and transcribed verbatim, either by an external transcription service or by the first author. To minimize bias, as recommended by Liamputtong [36], the interviewer regularly debriefed with the research team to reflect on her role as researcher rather than clinical occupational therapist.

2.4 Data analysis

Aligning with the steps outlined by Braun and Clarke [39], transcripts were first checked against the audio recording and edited for accuracy. Initial codes were generated about the experience of meaningfulness in the rehabilitation encounter from the perspective of each participant. Multiple readings of the transcripts ensured the familiarity required for thematic coding [39]. Adhering to practices that facilitate methodological rigor and dependable findings in qualitative research, a codebook and decision audit trail was maintained as codes were merged, refined and developed into themes [37]. Authors KL, AR & CB reviewed transcripts and textual examples regularly to confirm emerging codes and agree on interpretations [37]. Thematic analysis was carried out using the hybrid method described by Braun and Clarke [39]. This method blended theory-driven analysis, to examine whether the client-perspective had any synergy with themes previously identified by Liddiard et al. [32]; with data-driven analysis to identify any additional themes. Themes were reviewed across the entire data set to generate a thematic map and to increase rigor [39]. Themes were then refined, named and given clear definitions for final analysis. To increase dependability the researcher moved repeatedly between coded extracts, the full data set, and themes [37]. Member checking was carried out, and each participant was emailed their own transcript and a short summary of findings for any comments or corrections they wanted to make [36]. Finally, to reduce the risk of coding bias [37] a coding audit of 10% of the data across all transcripts was carried out by the third author (HDJ), who had not been involved in any previous analysis and/or coding discussion. Audit findings were discussed with the first author and 92% agreement was reached.

Participants believed that rehabilitation was more meaningful when it held personal value. They indicated that this may have an impact on client-engagement both at the time, and on completion of the therapy:

Rehabilitation was more meaningful if the therapist had realistic expectations and respected what the client felt they could cope with:

Some participants had strong expectations that they would achieve what they most valued, and that this served to drive them and add meaning to therapy:

In other instances, the therapy had meaning because it was structured around their personal interests:

For rehabilitation to be meaningful, participants identified a need to see progress towards a personally valued goal, and found meaning in the therapist’s efforts to highlight this progress, or help them understand any lack of progress:

3.2 Self-defined

Participants’ descriptions of meaningful rehabilitation reflected their preference for working on self-defined goals with expert input from the therapist:

The opportunity to define their own goals was described as meaningful by some participants because it empowered them:

3.3 Relevant to self-identity

Participants stated rehabilitation was more meaningful when their therapist knew them as a person, and, as a result, they perceived that aspects of therapy were tailored to their self-identity:

This ‘tailoring’ by the therapist considered aspects of the person such as roles, values and past meaningful activities, and demonstrated the therapist’s knowledge of their client’s character and sense of self-identity:

Participants explained that when they were encouraged to do more of the things that brought personal joy and a sense of meaning in life, the rehabilitation was more meaningful:

In addition to the themes above, three more themes not previously represented in the literature also emerged.

3.4 Genuine connection

Participants described a genuine connection with their therapist in, what they perceived as, a reciprocal and authentic relationship. Some participants explained that at times where they had to accept negative feedback, or an unexpected lack of progress, the genuine connection experienced with their therapist helped them maintain a sense that their rehabilitation was meaningful. This genuine connection relied significantly on a therapist who displayed characteristics of compassion, for example empathy, openness, approachability, a sense of humor, and the ability to make a participant feel heard and validated:

The authentic nature of the client’s connection with the therapist emerged as a key feature of this genuine connection. When participants felt like a commercial proposition, or just a number, they described this as non-meaningful.

By contrast a meaningful experience included a genuine connection, where participants found the therapist to be warm, and personal, with reciprocal emotional interactions bridging the therapist/client gap:

Participants’ comments reflected a belief that their therapist would know they had done everything possible to follow the therapist’s recommendations, and would not judge them when chronic pain or fatigue reduced their ability to engage in therapy:

3.5 Credible

From the participants’ descriptions of both meaningful and non-meaningful rehabilitation, a key theme was a perception that when the therapist was credible the experience was more meaningful. The Macquarie Dictionary defines the adjective ‘credible’ as “capable of being believed; believable” and “worthy of belief or confidence; trustworthy” [41]. According to participants, this credibility was conveyed in different ways. One unsurprising finding was that participants described greater confidence and trust when the therapist’s behavior demonstrated their experience, knowledge and professional skill in chronic pain:

In addition, however, some less obvious behaviors also led to a perception of credibility for participants. For example, when the therapist was confident enough in their own ability that they were willing to admit when they were unable to help:

or when they were willing to refer to other relevant chronic pain health professionals:

Credibility came not just from the therapist having training or extra knowledge of chronic pain in an academic sense, but also from the therapist knowing chronic pain as a lived experience – either their own, or through close connection with former clients, family or friends with chronic pain.

Participants perceived that when the therapist knew the lived experience of chronic pain, they behaved sympathetically and allowed for the participant’s chronic pain challenges and barriers. For example, participants described the experience to be more meaningful when the therapist accepted that they may be less engaged on a day when pain or fatigue was particularly debilitating:

Knowing chronic pain in this way, participants perceived the therapist was better able to relate to variations in their client’s experience, which made the therapist more credible and rehabilitation more meaningful:

3.6 A guiding partner

Participants described an encounter to be more meaningful when the therapist acted as a guiding partner in their chronic pain rehabilitation. Some explained that they were guided to change their future direction because their therapist offered an alternate perspective which allowed them to reflect on their situation and determine how they would like to change:

Rehabilitation was more meaningful for some participants when their therapist would check ‘where they were at’, either in relation to what they could physically handle that day, or their current mental and emotional reserve to deal with pain or other demands. They found rehabilitation meaningful when the therapist was able to ‘meet’ them ‘where they were at’, even if there was no forward momentum in their rehabilitation at that point:

If the therapist was able to guide them on aspects of the chronic pain experience, some participants described a sense of being empowered to cope on their own, which they felt was more meaningful. Their descriptions included both a sense of being empowered and that their therapist had confidence in their ability:

Participants perceived their guiding partner to be a meaningful resource to help develop coping mechanisms and strategies. At the same time, the therapist monitored, adjusted and personalized the direction, or trajectory, of their rehabilitation:

Some participants found it meaningful that their therapist, as a guiding partner, focused on living well with chronic pain rather than taking a curative/fixing lens for the pain interventions, and this extended to everyday activities:

Participants related an experience of now living well with chronic pain but, on occasion, also returning to their therapist to seek more guidance as a ‘tune up’, which indicates that this engagement with the therapist was meaningful to them:

4.1 A genuine connection

The theme of a genuine connection between therapist and client warrants further examination. Participants described a more meaningful rehabilitation encounter where the therapist was compassionate, authentic and non-judgmental, which encourages a reappraisal of the concept of professional boundaries. Biomedical models taught over past decades suggest that therapists should “bracket” their own experiences in order to forefront those of their client [42]. Some therapists may feel that they should establish professional boundaries and create a barrier to hold their own personal interests and experiences back from the therapeutic relationship [42]. The genuine connection described by our participants suggests that a reciprocal and authentic relationship with their therapist was highly meaningful. They found meaning in an opportunity to give of their own knowledge and experience, while at the same time benefiting from the knowledge and experience of their therapist. It is not clear that all rehabilitation training programs prepare new therapists for this type of relationship.

These findings have important implications for current therapists and for education programs that prepare future therapists. The professional-client boundary has been an ethical discussion over many decades. It remains a divisive topic [43] and is difficult to teach in a nuanced manner to healthcare professionals [44]. Therapists, whose training and practice aligns with assuming the traditional role of ‘objective expert’ [45], may have difficulty learning to negotiate this boundary line, while offering clients a meaningful rehabilitation experience. The concept of the professional-client boundary may warrant further investigation in light of this emergent information that focuses on the mostly overlooked perspective of clients, who describe a genuine connection with their therapist as part of a meaningful rehabilitation experience.

The genuine connection described as meaningful by these participants, may also encourage therapists to reflect on the concept of client-centeredness, a long-accepted tenet of rehabilitation where the person and their own goals are the focus of the therapy. It might be assumed that this focus is sufficient to ensure a client is fully satisfied with their rehabilitation, however, the genuine connection described by participants suggests that a meaningful encounter goes further than simply centring therapy on the client. The language and practice of relationship-focused therapy, as one element of a client-centered approach, is becoming more visible in rehabilitation literature [42]. Participants in this study described an intentional relationship with their therapist, and rather than expecting the full focus would be on them as the client, they explained that a reciprocal human connection was meaningful. Framed in this manner, therapists should be open to an authentic human connection, and be prepared to reflect on the nature of their therapeutic relationship as it evolves. A genuine connection may offer the therapist a valuable opportunity to understand the lived experience of chronic pain from their clients’ perspectives. It is plausible that this, in turn, could contribute to the view that future clients have of them as a credible chronic pain health professional.

4.2 The credible therapist

Participants perceived a credible therapist to provide a more meaningful rehabilitation encounter. Subthemes that contributed to this theme of credibility included that the therapist displayed professional knowledge, and behavior, along with a biopsychosocial perspective (Table 2). This is perhaps an unsurprising finding given that therapists themselves have identified a need for greater chronic pain training, in particular related to psychosocial knowledge and skills [25, 26]. In another subtheme, participants expressed that the experience was more meaningful when the therapist ‘knew chronic pain’ at a deeper level. The implication appeared to be that the therapist would not simply be trained in chronic pain skills, knowing chronic pain in an academic sense, rather they would know chronic pain from lived experience, either their own, or past clients and family or friends with whom they had sufficient connection to gain this richer perspective. Given the finding that rehabilitation is perceived to be more meaningful when a therapist develops a genuine connection with their client, it may be that those clients then privilege the therapist with their rich perspective of the lived experience of chronic pain.

This raises interesting questions about the nature of the chronic pain training that therapists need to be exposed to. It is not clear whether evidence has previously highlighted the importance of this type of credibility, based on truly knowing chronic pain, to create a more meaningful rehabilitation experience. This finding also highlights that further research is needed into how this knowledge can best be translated into practice. For example, is it possible to convey lived experience of people with chronic pain through continuing professional development and university training, or do therapists only truly gain this rich understanding through experience?

4.3 The role of guiding partner

In contrast to traditional practice, where a therapist takes responsibility to provide expert guidance [46], participants strongly endorsed a greater experience of meaningfulness when the therapist assumed the role of guiding partner. People with chronic pain often feel disconnected from the activities and relationships that give them a sense of purpose [47]. They may seek to re-establish meaningful activities with support from a therapist whom they trust, and who gives them confidence to decide their own direction [48]. This is greater than just taking the role of teacher or expert. Over the past two decades there has been a focus on therapists teaching people about chronic pain through educational psychology principles [49]. This growing direction has raised awareness amongst therapists about the importance of a biopsychosocial approach and encouraged a move away from an outdated biomedical perspective of pain [50]. However, it is important that this educational psychology approach is paired with other skills to reduce the risk that therapists adopt a role of teacher-expert rather than guiding partner.

Participants described the guiding partner therapist as someone who would offer an alternate perspective for them to reflect on, so they could adjust their vision of their future direction. The guiding partner was also someone who would ‘check-in’ with them, in a similar way to psychological approaches that require the therapist to be present but not always actively intervening [51]. The guiding partner that participants described was also someone who could help them to develop coping mechanisms and strategies to self-manage their pain experience. These descriptions are as much about facilitating clients’ self-efficacy, as they are about educating them on practical strategies. It is important that as therapists begin to work with people who have chronic pain, equal value is placed on the skills they need to translate pain knowledge for their clients, and those that will enable them to fulfill the role of guiding partner.

As a guiding partner participants discussed the ability of the therapist to monitor, adjust and personalize the trajectory of their ‘journey’ towards living well with chronic pain. Assuming a role of guiding partner rather than teacher-expert, however, may require an active commitment from therapists to reflect on the role they personally tend towards in their own practice. For some therapists, additional training may be required to assume the role of guiding partner and the challenges it presents for negotiating and communicating clear co-authored goals.

4.4 Guiding partner, genuine connection and the power differential

For the therapist to fulfill a role as guiding partner they must accept that power is shared between therapist and client. The power differential in a therapeutic relationship is something that therapists are increasingly encouraged to consider, and it has received growing attention in the literature [52]. The environment that a new therapist enters into following university may impact on their early development of professional values through a process of professional socialization [53]. If a therapist commences their career in an organization or institution where traditional or biomedical approaches are valued, they may lose sight of the need to examine the power differential, regardless of their training in these concepts. If they later move into the chronic pain field, it may be relevant to once again reflect on their own values and revisit the concept of power in their therapeutic relationships. This is especially important in light of the compassionate, authentic and non-judgmental genuine connection that people with chronic pain find meaningful.

A relationship of shared power has obvious benefits. One may be that the client feels empowered to not only ask the therapist for advice, but also to ask the therapist to share what they themselves would do if they were in the same situation [54]. This honest discussion may allow the client to benefit from the therapist’s contemporary pain knowledge and opinion, while at the same time retaining the control and autonomy in their own rehabilitation [54]. While the genuine connection with a credible therapist as guiding partner was described as meaningful by people with chronic pain in this study, it may also contribute to better outcomes. Therefore, further research is needed to examine exactly what the genuine connection, credibility and guiding partnership encompass, and how therapists may enact these in a pragmatic way given the requirements for accountability and time pressure that the health system currently imposes on rehabilitation.

4.5 Limitations

As with all studies there were limitations. The researcher brings a specific socio-cultural lens to the analysis; however, this was mitigated by using a range of well-established methodological strategies to ensure study trustworthiness. Some participants had past histories with rehabilitation (Table 1) and while longevity of the therapeutic relationship and perceived meaningfulness have not been linked in the literature, there is potential that this had an impact on findings, and this will be an important question for future research. The scope of this study focused on what people with chronic pain perceived to be meaningful in the rehabilitation encounter. Further research is needed; for example, what criteria do clients use to determine therapist credibility? How can elements of meaningful rehabilitation, such as the genuine connection, be achieved within the current constraints of many healthcare systems? What are potential negative outcomes of shared decision-making in the guiding partner role?