3. Providing Person-Centred Care, Creating Therapeutic Space and Recognizing the Needs of
Service Users

The concept of patient-centred care was first discussed by Balint in 1969, where it was described as “understanding the patient as a unique human being” (Balint 1969). Since then, patient-centred care has been an evolving concept and has been described using an array of different terms, including relationship-centred care, personalized care and user-/client-centred care (Santana et al. 2017). In this chapter, we use the term person-centred care as opposed to patient-centred care, in keeping with Ekman et al. who distinguished person-centred care as refraining from reducing the person to just their symptoms or disease (Ekman et al. 2011). A person-centred approach is concerned with human connectedness: the capacity for thought and feeling to be received, and lives to be revealed (Procter 2016). When working with refugees, person-centred care will involve:

• Being open to the way a person explains, understands, or interprets her or his or someone else’s health problems or illness.
• Taking into account a person’s cultural beliefs, and understanding that these will influence the way in which symptoms are presented.
• Considering the person’s understanding of health difficulties and becoming aware of differently perceived causes of illness or disease, optimal care, and culturally appropriate support and treatment.

Filler et al. (2020) outlined practical strategies that health and social care professionals can implement to aid the delivery of person-centred care in a scoping review, which explored barriers and facilitators of patient-centred care for immigrant and refugee women. A friendly, courteous, and comfortable relationship can be established by assuming a non-judgemental manner, taking time to chat informally, being present, and focusing on the service user (not the computer), becoming familiar with the service-user’s culture and migration journey, and potentially learning a few words of the service-user’s native language.

One of the four Process domains in the Framework for Person-Centred Care is the provision of respectful and compassionate care (Santana et al. 2017). Compassion is a deep feeling that stems from witnessing another’s suffering coupled with a strong desire to help to alleviate that suffering (Goldberg 2020). There are numerous definitions of compassionate care, but there are elements common to many of these: understanding others, choosing to act to help others, actively imaging what others are going through, and reacting to others’ needs selflessly (Bivins et al. 2017). Patients who experience compassionate care have been found to have better clinical outcomes, higher patient experience scores, improved hope for recovery, and safer care (Tehranineshat et al. 2019; Goldberg 2020). However, it should be noted that the delivery of compassionate care depends on more than just individual health professionals, and that the wider healthcare team and organisational context in which the care is delivered are key (Tehranineshat et al. 2019). Caring for patients must be a shared responsibility between professional groups within clinical environments that value and respect each discipline’s contribution (Bivins et al. 2017). Despite this, health professionals can face challenges with providing compassionate care in practice due to bureaucratic barriers and time constraints, given the business-like ethos of certain areas of healthcare (Patel et al. 2021).

Key recommendations from this project (Mechili et al. 2018; van Loenen et al. 2018) for the provision of compassionate care included:

I think people need more information and more time to explain. Because when a person went to a doctor for example in Kenya, they got the time to explain… But here the doctors will want you to say you have problem. “there and there”. They are the one who can ask you the question about it. Most of the refugees find that the doctors maybe don`t have time. Because the personal doctors, they don`t have time. They have 20 minutes and most of the time they are writing, and they can think that this doctor just wants to finish with me and go. — Male economist from Kenya living with refugee status in Norway

It is good that those who work with these refugees are updated. That you get a better understanding of what they have gone through and that they are not here voluntarily. That they have come here to save their lives. Their own or to those closest to them. So, we must try to help them in the best possible way, both physically and mentally.

— Female nurse from Bosnia living with refugee status in Norway

Developing a therapeutic relationship can be aided by shifting the professional/personal boundary towards the personal end of the spectrum (Finaret & Shor 2006). This shift can be assisted by open communication, an informal work setting (e.g., the client’s home) and self-disclosure from the professional (Finaret & Shor 2006). Similarly, Miciak et al. (2018) found that physiotherapists and patients being genuine or themselves during interactions was a necessary condition for building therapeutic relationships. Horton et al. (2021) explored the development of therapeutic relationships between physiotherapists and occupational therapists and their patients, and, specifically, the impact of turning points or critical events on these therapeutic relationships. Constructive turning points that help to develop high-quality therapeutic relationships included progress towards goals, positive feedback from patients, and interpersonal affective bonding with patients. In contrast, non-constructive turning points included setbacks in progress towards goals, interpersonal problems with patients, and negative feedback from patients. These studies highlight the importance of health and social care professionals being open, authentic, and willing to be vulnerable themselves when working with clients to help to develop a positive therapeutic relationship.

Effective therapeutic relationships also demand that health and social care professionals can appropriately respond and manage emotional reactions. To do this they must acknowledge service-users concerns, offer comfort and encouragement during sessions and collaborate with the wider multi-disciplinary team as needed (Filler et al. 2020). It is also important that cultural differences are recognised, accommodated and respected, and that care is personalized to the individual rather than generalized to culture or country of origin (Filler et al. 2020).

Humour may be another strategy that health and social care professionals can employ to cultivate a sense of belonging in the rehabilitation setting (Kfrerer et al. 2023). Humour has been found to improve co-operation, compliance and positive motivation in clients (Leber & Vanoli 2001; Walsh & Leahy 2009) and can help with client engagement in rehabilitation (Gard et al. 2000). In a scoping review exploring humour in rehabilitation professions, humour was found to be a used mainly positively in rehabilitation and was considered to be an effective way to improve client/professional relations (Kferer et al. 2023). Humour was used in a number of different ways to build and maintain the therapeutic relationship, including:

• As a management strategy in therapy—to deflect errors, mitigate awkward situations, distract or restructure interactions, and maintain a frame of joking or light-heartedness during sessions.
• To foster relationships with colleagues within the multi-disciplinary team.
• To negotiate power differentials that can exist as part of the relational dynamics between clients and professionals—humour can be used to either establish power and thus influence the tone of the interaction or to equalize power and break down barriers.
• As a therapeutic modality, particularly in group rehabilitation settings.
• To save ‘face’—humour was a way for clients to show that they understand and are aware of their condition and difficulties. It can provide a means to ask for help and laugh at oneself.
• To cope with grim situations—using dark/’gallows’ humour to relieve tension during vulnerable or intimate struggles in rehabilitation. It can also provide stress relief when used between health professional colleagues.
• To foster group cohesion—by building trust, emphasizing togetherness and indicating belonging to the group.

What is important is to know the situation, and a little more about the country they come from. About what they have been through and try to understand and be able to help them better. In other words, health personnel can improve their professional practice by learning from people with a refugee background.

— Female nurse from Bosnia living with refugee status in Norway

In Sweden, he lives with his wife and three children in an apartment provided by the Swedish social services. He attends an introductory programme for migrants but finds it very hard to concentrate due to sleeping problems and flashbacks from torture. He’s very concerned about his and his family’s future in Sweden. He wishes very much to find a job.

To receive a PTSD diagnosis, one has to have been exposed to trauma. In Khaled’s case, he has both experienced a traumatic event himself and been forced to witness the torture of friends and fellow prisoners. Khaled’s father, who was also politically involved, was imprisoned and tortured when Khaled was a young boy, so Khaled has been exposed to various traumatic events also as a son.

Torture is an act that violently and intrusively attacks an individual’s boundaries, physically and mentally. The subjective experience is lack of control, a high degree of helplessness, no possibility to defend oneself, and unpredictability. It induces fear, stress, and pain. Torture results in bodily injuries: wounds, fractures, burns, muscle strains, as well as psychological harm. The absence of treatment affects the healing in a negative way. Torture seeks to break its victim through the intentional use of pain to destroy and/or damage the physical and psychological integrity of the individual and by extension the integrity of the family and community.

Torture and trauma results in alterations of an individual’s body ego; loss of body awareness means loss of the ability to recognize one’s body and one’s physical experiences or sensations which can impair one’s ability to understand one’s needs and emotions. Impairment in the ability to trust one’s body evokes a negative body image and dissatisfaction with one’s body. Reconnecting to the body in a positive way and learning how to use movements to self-regulate a conflicting inner state is a central part of recovery. Understanding the method of torture used can aid the physiotherapist in understanding the injuries, and managing the assessment and treatment appropriately and sensitively.

The physiotherapist prepares for the meeting with Khaled by reading his medical journals and consults with the psychologist. When Khaled enters the physiotherapist’s room, the physiotherapist starts by asking Khaled to choose a place to sit and asks whether Khaled is okay to be in the room with the door closed. Khaled chooses to position himself so he can see the door. The physiotherapist introduces herself and informs Khaled that, being a healthcare professional, she works under confidentiality laws but that information about patients is shared within the team.

He sleeps two to three hours a night and always with the light on. He is often woken by nightmares, feeling paralyzed, and has difficulty going back to sleep. He has no appetite and very low levels of physical activity. This is all of the information that Khaled is able to share during the first meeting with the physiotherapist.

The role of the physiotherapist during the first meeting is to start building an alliance with Khaled, not to push too deep into Khaled’s story. Khaled keeps repeating that he is tired, and he hardly gives any eye contact, his legs are constantly shaking. He is very tense in his shoulders and he keeps his head bowed; he doesn’t take off his jacket. The physiotherapist briefly describes how bodily work can help trauma-affected individuals to relax, and that during coming sessions they will explore self-regulating techniques that might help Khaled to stay present and reduce his anxiety. The physiotherapist describes what they will do next time they see each other so that Khaled feels prepared and to ensure predictability. No examination of his shoulders or back is performed at this point.

At the second assessment, the physiotherapist uses the ‘Body Awareness Movement Quality and Experience Scale’ to examine Khaled’s bodily resources. This is a test that consists of two parts; the first one is an observer-based rating scale where the physiotherapist evaluates the functionality of various visually observed movement patterns. The second part consists of a questionnaire on subjective experiences of the body. Results show that Khaled is very tense in his body; he has poor stability and flexibility. He also shows poor coordination and a shallow breathing pattern. His breath is really never integrated with his movements and Khaled finds it very hard to relax when lying down on the floor. He says it reminds him of how his torturers forced him to lie down on cold floors, sometimes for hours, with the threat of beatings if he moved.

During both assessments, the physiotherapist checks in frequently with Khaled by using questions like, “Is it okay if we continue a bit further, or do you need a pause?”, “How are you feeling right now?”, “Do you have any questions or reflections on what we just said?” The physiotherapist and Khaled agree on treatment with basic body awareness therapy, an evidence-based treatment form, that aims to establish increased awareness of the body and consciousness in movements, progressing toward less effort and a better function in being, doing, and relating. The physiotherapist also proposes that Khaled should participate in group workouts in order to strengthen his physique, but Khaled feels a bit uncertain about this since he has difficulty trusting other men. The physiotherapist and Khaled decide to delay the group workout until Khaled feels safer. Khaled also meets a social counsellor for psychosocial mapping in order to identify difficulties in his daily life that may become a hinderance for therapy. He also receives a prescription for sleeping medication from the medical doctor.

Throughout all of the consultations at the treatment centre, the same translator is present in the room with Khaled. She is an elderly Palestinian woman. Early in the treatment process, Khaled, the psychologist, and the physiotherapist make a common healthcare plan. This plan is reviewed every six months, as long as his treatment proceeds. In the plan, Khaled’s stress factors and protective factors are described; his recurring flashbacks, insomnia, concentration difficulties, body pains, and a psychosocial situation with no job or income are recorded as stress factors. Protective factors are his permanent residence permit, the support he has from his family, and that he is motivated to engage with treatment.

Khaled’s treatment goals are:

• To be able to be around people without fear.
• To sleep five hours a night.
• To be able to concentrate at school so he can learn Swedish.

Many patients with PTSD suffer from concentration difficulties and it is therefore crucial to portion the amount of information given. Repetition might be of great help to the patient. Continuity in terms of using the same room and same translator creates a space that is safe and predictable. Strong physiological reactions can be triggered in a traumatized individual by different stimuli, for example smells, sounds, touch, body positions, but also inanimate objects such as an examination bed or medical equipment. Therefore, be aware of the patient’s bodily reactions, don’t be afraid of asking, “I see that you’re tensing. How are you feeling right now?”.

Every session starts with the physiotherapist checking in with how Khaled’s week has been, how he is feeling, and how his body is feeling. Khaled is given the opportunity to discuss the content of the session. At the end of a session, Khaled is invited to reflect on how it went. The physiotherapist noticed that Khaled often is very shaky when sitting in the waiting room and that he avoids eye contact with other people. He sits in a slumped position; his legs are shaking, and he points his gaze onto the floor.

In the room with the physiotherapist, Khaled shows the same pattern. He reacts to sudden sounds and often looks behind his shoulder. The physiotherapist tries to guide Khaled verbally into a more upright position, where he will experience more space for his breath and a reduction of muscle tension in his neck and back. There are a lot of trauma triggers coupled to different movements and positions. The physiotherapist normalizes and validates Khaled’s reactions, and a lot of time is spent on letting Khaled reflect on his experiences in the room and how increasing contact with the body and movements can help Khaled regain and reconquer his body after consulting with Khaled’s psychologist.

PTSD and persistent pain are frequently seen in the aftermath of a traumatic experience. Torture survivors have an increased risk of suffering from persistent pain. What factors contribute to the development of persistent pain? Factors that are believed to play a role are: initial pain severity, extent of injury, and the level of emotional stress at pain onset, all of which are present at a high degree in a torture situation. Several factors contribute to persistent pain: continued emotional stress, poor sleep, and avoidance behaviour. Pain can remind the patient of the torture situation and therefore many torture survivors try to avoid pain-provoking activities. This can lead to physical deconditioning, social withdrawal, and minimal involvement in daily activities, and can also contribute to physical deconditioning. Catastrophizing, imagining the worst outcome, can lead to increased stress and arousal and enhance the pain experience. Pain-related fear can cause guarding movements such as tensing of the body.

To treat Khaled’s back pain, core exercises are introduced. Firstly, only verbal guidance is used but with a growing feeling of safety; more organic guiding is added in order to help Khaled find a more stable and grounded posture.

A few months later Khaled feels that he is ready to try out the group workout. In the beginning, he stands apart and doesn’t interact with other participants but slowly he begins to be more confident. The group activity later inspires Khaled to start working out on his own.

Integrated healthcare strategies directed at both psychological and physical health, as well as rigorous control of risk factors, are likely to improve the quality of life of traumatized individuals. As the psychologist approaches Khaled’s memories of torture, Khaled experiences bodily reactions in terms of numbing but also back and neck pain. The psychologist encourages Khaled to use body awareness exercises to stay present during their exposure therapy.

The psychologist and physiotherapist always try to have a short talk in between each other’s sessions to reinforce each other’s treatment strategies. Khaled says that he’s found having physiotherapy during and directly after his sessions with a psychologist to be very helpful. He becomes more present and connected to his body. He describes that his head becomes silent when practicing basic body awareness. The safer Khaled feels with the physiotherapist, the more they work with building trust and confidence through couple exercises, for example guiding each other in the room with open and closed eyes.

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