‘Discharge was successful if:

Although Table 6.2 is not an exhaustive list of the literature in this area, these ­studies do convey the importance of capturing the ‘stories’ that patients can tell us about their experiences of rehabilitation services. It is clear that individuals make their own assessment about whether a rehabilitation service is satisfactory in meeting their needs. There are some common themes about what constitutes ‘satisfaction’ but the specific details may remain unclear, after all satisfaction is subjective in nature and so inherently an individual experience. Clinicians, who wish to have a better understanding of what this individual experience might be, and how patients assess their satisfaction with services, can do so through building relationships with patients and their families, and it is to the family context that we now turn our attention.

6.8 Placing the person in their family context and involving families in rehabilitation

There is only a small amount of research published in the clinical rehabilitation ­literature about family-centred approaches to rehabilitation practice for clinicians, so much has to be borrowed from family therapy practice and then applied in principle to the type of rehabilitation we are discussing in this book. However, we want to make an explicit distinction between involving families in rehabilitation and doing family therapy, the latter requires specialist training and is not something we can cover in this book. We acknowledge two family therapists, Ginny Hickman and Bennett Friedmann, for the work they have done in drawing together some of the ­following material for rehabilitation professionals who want to learn more about family-centred approaches.

The main principle is to think of families as systems and that by understanding this system and how the person and their family members work in this system it is possible to assist the person through their rehabilitation journey (Chenail et al., 1992). Family therapists strive for the individual to always be considered in the context of their family system regardless of where they are in the rehabilitation process. So although medical care might be prioritized at the time of acute hospital admission and it may not be possible to work with the family, there is still an argument for considering the family context as this provides the basis for understanding the patient as a person. For example, as the person moves through their rehabilitation journey so the family functioning changes. Clark and Smith (1999) describe the irrevocable change in family functioning that follows the sudden occurrence of disability (stroke) in a person who was previously a healthy member of the family, and how the care of this person becomes largely the responsibility of the family as the person moves from acute to long-term chronic illness.

Early models of family therapy practice have been criticized for allowing a power imbalance to arise, with health professionals in the dominant position and ‘doing’ therapy to the family. More recently the ‘strengths and solution focused approach’ (Munford and Sanders, 1999) and narrative models (White and Epston, 1990) of ­family therapy, have shown that it is possible to emphasize empowerment, sharing of information and working in partnership with the person in the context of their family. However, it is clear that many health professionals do not feel adequately skilled to work with families, and reports of dissatisfaction with services from families suggest that this is indeed true (Becker and Silburn, 1999). So although this book cannot ­provide you with training in family therapy for rehabilitation, the following points may help when working with patients in the context of their family:

• interconnections occur between all individuals within a family;
  
• anything that has an impact on one family member will affect all family members;
  
• one family member with an illness or injury will have an impact on all family members;
  
• when someone in a family becomes ill or injured all boundaries, roles, power ­dynamics, relationships and communication patterns are likely to change;
  
• talking about what has, and is happening, with everyone will help open lines of communication;
  
• if possible, attempts should be made to meet and get to know the family, and ­include them in the rehabilitation plan;
  
• recognize that the family can play a pivotal role in assisting or obstructing a ­person’s rehabilitation.

(adapted from Hickman and Friedmann, 2010)

These approaches complement the ICF framework, since by thinking about the person in terms of participation (and not impairment or disability) it is then natural to also consider their family and immediate social context.

What these sections and research studies tell us is that rehabilitation services need to support the existential struggle of rehabilitation patients (Sigurgeirsdottir and Halldorsdottir, 2008) as they do the physical, psychological and biographical work of rehabilitation. Furthermore, services must do this in a way that prepares the person for life outside hospital. This can start with fostering a ‘can do’ attitude and enabling the person to regain control of their present and their future. To this end Ellis-Hill et al. (2008, p. 15) recommend ‘endorsing a positive self view’. MacLeod and McPherson (2007) argue that ‘a compassionate perspective’ is required to guide truly person-centred care that is both empathetic and collaborative. This requires ‘­something deep’ from within rehabilitation staff and needs to ‘be expressed as moral action’ (MacLeod and McPherson, 2007, p. 1591). Some ideas for operationalizing this moral action in the context of person-centred rehabilitation processes and practices are given in the next section.

6.9 Ideas for making clinical rehabilitation processes and practices person-centred

In this section we move away from the theory and instead offer some ideas for how to be person-centred in your rehabilitation practice. As noted earlier in this chapter, rehabilitation is an intricate web of processes and sub-processes, each with its own potential to be more or less person-centred. However, when rehabilitation is viewed as a collective effort, involving staff, patients and patients’ supporters in ­co-­production, the potential of person-centredness can be realized. Rehabilitation ­practices can then move beyond what Willis and colleagues (2008, p. 94) refer to as ‘the rhetoric about patients and families as “partners in care” ’.

Thinking of rehabilitation as the co-production of work requires understanding of all the ‘ingredients’ of that work. The first ingredient is you; you the person who is the health worker and you as the health worker. The second is the person who is the patient. The third is the rehabilitation team, ward or service. The fourth is the organization, and the fifth is the policy and funding framework for service provision. It might seem surprising that we have put the health professional as the first ingredient. However, because staff are the face of service, organization and policy, this section starts with the staff. A second reason for starting with the staff is that each of us is responsible for our ­personal contribution to patient rehabilitation and so it is within our power to control and adapt our practice (and may be one of the reasons you are reading this book).

Idea 1: Get to know yourself

Consider now who are you and what makes you a person, unique from others. We suggest that you, as a person, are a composite of your biology and life experiences and the sense that you make of that. This is what you bring to interactions with ­rehabilitation patients.

Leaving aside that the ICF is limited in its ability to portray the dynamic nature of your personhood, look at the diagrammatic representation of ICF (WHO, 2001) and use it to think about yourself (see Chapter 2). Think about aspects of your bodily structures and functions: your height, the shape of your feet, how well you see or hear, the strength of your upper arm. Now think about activities and participation in relation to your body, starting with mobility: think about grasping, manipulating, pushing and pulling objects; do you experience any difficulty maintaining a squatting position or walking around an obstacle? Next think about communication and relating to others: initiating, sustaining and ending a conversation or discussion with one or more ­people, and using various communication machines and technical equipment; do you use similar body language when communicating with strangers, siblings and peers?

Now spend some time thinking about the physical, social and attitudinal aspects of the environments in which you live: consider the products and technology that you use every day, once a week or less often; think about how the attitudes of others have an impact on you; what public policies you agree and disagree with. Finally, think about yourself in terms of personal factors, for example: your methods for coping with taxing situations; your attitudes, values and beliefs about people with disabilities; the role of family and friends in rehabilitation; the role of government in providing for the less able members of a society. Consider now the attitudes, values and beliefs that your socialization as a healthcare professional has instilled in you; whether you bring ‘a compassionate perspective’ to your work; whether you have been ‘trained’ to think in a biomedical scientific, reductionist way.

Idea 2: Authentically seek to understand the person who is the patient within the context of their life story

Patients bring their personhood, as well as their impairments and activity limitations to the co-production of work with staff. Like the staff, each patient brings the ­composite of their biology and life experiences and the sense they make of it. Each also brings their life story and just like staff, patients bring assets and liabilities, ­enablers and barriers, to rehabilitation. Most importantly, the determination of what is an enabler and what is a barrier is an intrapersonal process, so patients and staff may hold different interpretations. For example, staff may consider 20 cats an environmental hazard for a new wheelchair use; the patient however, may consider the cats as family, providing her with companionship and meaning. This may seem like an extreme example, but we can assure you that many community-based professionals will have encountered similar (i.e. pet related) ‘home contexts’ and will have been faced with the dilemma arising from interpretation of risk being different between themselves and their patient. In keeping with the theme of this chapter it is beholden to the health professional that they show a commitment to seeking a shared understanding with their patient, and this can be achieved through the assessment process.

As we saw in Chapter 4, assessment is the process healthcare professionals use to get to know their patients, and it is an opportunity to get a sense of the person who is the patient, their life before their current accident or illness as well as their hopes, dreams and plans for the future. Although assessment forms can provide a starting point, they often fall short in capturing a patient’s life story. It is all too easy for the time-pressed health professional to just ask closed questions or listen selectively, because they have to fill boxes on an assessment form. The whole assessment process is fraught with even more difficulty when we recognize that the life story of the newly disabled person may be changing, as the person transitions from their old self to their new self. Furthermore, for some rehabilitation patients, life, as they are currently experiencing it, can be foreign and make little sense. This reveals an additional layer of complexity to understanding the person who is currently the patient: their life story, their ‘context’, may currently be in a state of chaos.

Let us consider Idea 2 again, how do we ‘authentically’ seek to understand the person who is the patient within the context of their life story? The answer is simply to listen. Invite patients to share their life stories and listen. Do not interrupt to ask questions on an assessment form. Listen for the meaning that the person attributes to their situation and its causes; listen for evidence of significant people (including pets) and life roles; listen for indicators of environmental enablers and barriers; and listen for the person’s strengths and attributes. Listen more than once, listen over and over as patients share their life stories. Listening authentically is the foundation stone of effective rehabilitation practice.

In addition to this ‘active’ listening role, consider changing the way you prompt the person to tell you more. Traditional clinical assessment questions and prompts are designed to help the clinician in their clinical reasoning process, to drill down to the cause of the problem (to make a diagnosis or classification), to identify a clinical priority, to determine the treatment that best matches the condition. These questions tend to be worded as ‘closed questions’, inviting a ‘yes’ or ‘no’ answer, such as the patient with low back pain who has to tell the physiotherapist where they feel the ‘worst’ pain (and so discounting all the other pains or symptoms that may matter to them). Asking the patient ‘please will you tell me about your back pain?’ is an open-ended question, an invitation to talk freely about their low back pain experience. These types of questions are typical of qualitative approaches to health research enquiry, whereby the researcher endeavours to maintain a mutual power balance in their relationship with the research participant. Trying this approach as a clinician is initially hard work, the assessment schedule can be disrupted and even not completed (from the clinician’s traditional point of view). Yet, so much more can be learnt about what matters to that patient when you ask open-ended questions, such as ‘what do you expect from rehabilitation?’ as some patients may not even know why they have been referred to a particular service, such as physiotherapy. This question may also reveal the patient’s beliefs about their condition and how they make sense of a proposed treatment (for more on this see Weinman et al, 1996). In the example of the patient with low back pain, if they thought their back was ‘worn out’ because the doctor had told them it was showing signs of ‘wear and tear’ due to the degenerative changes of old age, then they might also think that the physiotherapist’s exercises would ‘wear’ their backs out even further. In this situation it is unlikely to make sense for the patient to engage in exercise-based rehabilitation.

Idea 3: Take responsibility for building a trusting relationship that enables patients to do the physical and biographical work of rehabilitation

The next step, after authentically seeking to understand the person who is the patient within the context of their life story, is to help that person to build the scaffolding that enables them to do the physical and biographical work of rehabilitation. Part of this means we have to take responsibility for building a trusting relationship that enables patients to do that work.

This starts with taking individual responsibility for being genuinely trustworthy and demonstrating this to patients. To do this, we need a wide repertoire of interpersonal skills for connecting with people. In Idea 1

Related posts:

Introduction Outcome measurement in rehabilitation Processes in rehabilitation An interprofessional approach to rehabilitation Conclusion: rethinking rehabilitation A rehabilitation framework: the International Classification of Functioning, Disability and Health

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