3: Person-centredness and long-term neurological conditions

CHAPTER 3
Person-centredness and long-term neurological conditions


3.1 Introduction


Person-centredness relates to treating people with dignity, compassion and respect and as such aligns to the underlying philosophies of occupational therapy. However, the delivery of care which is developed in partnership with people living with a long-term neurological condition, in response to their individual and constantly changing needs, can be challenging for occupational therapists. In this chapter we explore the key principles along with the barriers to delivering person-centred care and offer some practical guidance for occupational therapists moving towards more collaborative models of care.


3.2 Person-centredness


3.2.1 What is person-centred care?


Person-centred care can be defined as ‘a partnership among practitioners, clients and their families to ensure that decisions respect clients’ wants, needs and preferences and that clients have the education and support they need to make decisions and participate in their own care’ (Institute of Medicine, 2001a). Person-centredness assumes that the person living with a long-term neurological condition has the ability to decide their own needs and expectations and that they are able to make decisions and choices about what they need and want (Lutz and Bowers, 2000). The underlying philosophy of person-centred care is about considering the client’s opinions and circumstances in the decision-making process and goes well ‘beyond simply setting goals with the client’ (Ponte et al., 2003).


The underlying principles of person-centredness include care that is personalised, co-ordinated and enabling while ensuring the person is treated with dignity, compassion and respect (The Health Foundation, 2014). Person-centredness requires the occupational therapist to practise in a style which is responsive to the client’s needs and wishes through a process of interaction in which the client and the occupational therapist are constantly influencing each other (Mead and Bower, 2000). The role of the occupational therapist within a person-centred care model is to demonstrate a willingness to understand the wider aspects of neurological disability, appreciative of the challenges from a holistic perspective (Mead and Bower, 2000). Evidence suggests that as client engagement increases, staff performance and morale see a corresponding increase (Finset, 2011; The Kings Fund, 2012).


Developed within a biopsychosocial framework person-centred care seeks to move beyond the understanding of the client within the more conventional biomedical model (Mead and Bower, 2000).


3.2.2 Medical model of care


The underlying principles of the medical model of care have developed within a scientific process which recognises and describes symptoms leading to an accurate diagnosis and the selection of appropriate therapy to restore or improve the client’s problems (Neighbour, 1987). Informed by the best available evidence, occupational therapists practising within a medical model offer the person living with a long-term neurological condition specific expertise and advise to overcome their problems or difficulties.


For occupational therapists practising within a medical model of care there are five key stages to the occupational therapy process:



  1. Problem identification: this is the starting point of the intervention sequence and is intended to gather information which helps understand the nature of the problem, particularly in relation to normal and abnormal functioning, for example range of movement, tremor and memory.
  2. Problem analysis: once a problem has been identified, it needs to be understood in relation to the client’s current situation. The occupational therapist will attempt to define the problem in relation to the client’s overall level of functioning, for example increased tone leading to difficulty getting in and out of bed.
  3. Decision-making: during this phase decisions will be made regarding the desired outcome, and the occupational therapist will begin to problem solve potential solutions and make decisions on the most appropriate approach to overcome the difficulties, for example provision of equipment or specific interventions, such as fatigue management and splinting.
  4. Treatment implementation: an action plan is developed and implemented based on the best available evidence. The client will be advised of the expectations and any risks associated with the intervention and the potential outcomes.
  5. Evaluation: the effectiveness of the intervention is measured against the desired outcome and adjusted accordingly. The success of an intervention may be determined by the level of engagement or compliance by the client.

3.2.3 Social model of disability


The social model of disability provides a structure to help occupational therapists understand how disability can limit opportunities for participation in the wider community (Shaw, 2001). It is underpinned by a belief that disability itself is not a restriction to participation, but it is the barriers imposed by society, which create unnecessary isolation and exclusion (Oliver, 1996). It distinguishes between impairment and disability, that is the relationship between a person with impairment and society (Shakespeare and Watson, 2002).


The social model of disability supports people living with a long-term neurological condition to ‘achieve the lifestyle of their choice,’ recognising the contribution of the occupational therapist as a resource offering knowledge and expertise (Picking, 2000). It has been influential in the development of policy and strategy promoting a culture of social and societal change including equal opportunities and wider accessibility within the built environment (Shakespeare and Watson, 2002).


3.3 Client-centred practice


The concept of client-centred practice is well established within the theoretical models of occupational therapy. The earliest models, described through the work of the Canadian Association of Occupational Therapists and Department of National Health and Welfare (1983), recognised a need by clients for greater autonomy and control over their health conditions (Law et al., 1995). However as the models of client-centred practice have evolved, the key principles have been adopted within the wider care context to reflect and support people to develop the knowledge, skills and confidence they need to more effectively manage and make informed decisions about their health and well-being (The Health Foundation, 2014).


Client-centred practice remains the predominant language in occupational therapy and has developed from the underlying principles of (Law et al., 1995):



  1. Autonomy and choice: recognising that every person brings a level of expertise developed from their own experience of living with a long-term neurological condition
  2. Partnership and responsibility: reflecting the visions and values of the person living with a long-term neurological condition
  3. Enablement: supporting a shift from a deficit model of care to an approach focussing on strengths and supports within natural communities
  4. Context: recognising the impact of roles, interests, environments and cultures on occupational performance
  5. Accessibility and flexibility: developing services around the needs of the person living with a long-term neurological condition
  6. Respect for diversity: acknowledging the importance for occupational therapists to recognise their own values and not to impose these values on clients.

Client-centred practice is both a conceptual framework and a behavioural approach which impacts on the occupational therapy process, that is the sequence of actions which an occupational therapist undertakes to decide on the most appropriate intervention (Hagedorn, 1997). Traditionally occupational therapists have taken an active role in the assessment and identification of problems before deciding on the most appropriate interventions and the desired outcomes (Hagedorn, 1997; Law et al., 1995). In client-centred practice, the person living with a long-term neurological condition assumes a more active role in defining both the goals and the desired outcomes of intervention (Law et al., 1995). The role of the occupational therapist shifts to one of facilitator in working with the person living with a long-term neurological condition to find the means to achieve those goals (Kaplan, 1991).


Within a client-centred model of care the occupational therapist is required to follow a structured process to fully understand the needs of the person living with a long-term neurological condition. The Canadian Practice Process Framework (CPPF) offers a client-centred approach to the occupational therapy process (Davis et al., 2007; Table 3.1).


Table 3.1 The Canadian Practice Process Framework.


Source: Davis et al. (2007), table 10.1, p. 251. Reproduced with permission of Canadian Association of Occupational Therapists CAOT Publications ACE.

































The Canadian Process Practice Framework (CPPF): Eight action points at a glance
Action points Key enablement skills and actions
Enter/initiate

  • Call to action: Advocate for the client and occupational therapy to create positive first point of contact with client based on a referral, contract request, or the occupational therapists’ recognition of real or potential occupational challenges with individual, family, group, community, organisation or population clients.
  • Consult to decide whether to continue or not with practice process.
  • Educate and collaborate to establish and document consent.
Set the stage

  • Engage client to clarify values, beliefs, assumptions, expectations, desires.
  • Collaborate to mediate/negotiate common ground or agree not to continue.
  • Adapt ground rules to the situation, build rapport, foster client readiness to proceed.
  • Explicate mutual expectations and document the ‘stage’ set.
  • Collaborate to identify priority occupational issues (OIs) and possible occupational goals (OGs)
Assess/evaluate With client participation and power-sharing as much as possible or desired:

  • Assess (sometimes called ‘evaluate’) occupational status, dreams and potential for change.
  • Consult with the client and others, use specialized skills to assess/evaluate and analyse spirituality, person and environmental influences on occupations.
  • Coordinate analysis of data and consider all perspectives to interpret findings.
  • Formulate and document possible recommendations based on best explanations.
Agree on objectives and plan With client participation and power-sharing as much as possible or desired:

  • Collaborate to identify priority occupational issues for the agreement in light of assessment/evaluation.
  • Design/build plan, negotiate agreement on occupational goal, objectives, and plan within time, space and resource boundaries, and within contexts using requisite elements.
Implement the plan With client participation and power-sharing as much as possible or desired:

  • Engage client through occupation to implement and document process.
  • Specialize in program frame of reference as appropriate to effect of prevent change.
Monitor and modify With client participation and power-sharing as much as possible or desired:

  • Consult, collaborate, advocate, educate and engage client and others to enable success.
  • Adapt or redesign plan as needed in monitoring progress through formative evaluation.
Evaluate outcome With client participation and power-sharing as much as possible or desired:

  • Re-assess/evaluate occupational challenges and compare with initial findings.
  • Document and disseminate findings and recommendations for next steps.
Conclude/exit With client participation and power-sharing as much as possible or desired:

  • Communicate conclusion of interaction between client and therapist.
  • Document conclusion/exit and disseminate information for coordinated transfer or re-entry.

Stewart et al. (1995) outlined a model of person-centred care with six key stages which, although not specific to occupational therapy, provides a framework to facilitate a person-centred approach:



  1. Exploring both the disease and the illness experience
  2. Understanding the whole person
  3. Finding common ground regarding management
  4. Incorporating illness prevention and health promotion
  5. Enhancing the therapist–client relationship
  6. Being ‘realistic’ about personal limitations and issues such as the availability of time and resources.

Each stage of this model will be considered within the context of occupational therapy practice and practical guidance, and resources will be identified to support the occupational therapist to develop the knowledge, skills and behaviours required to successfully deliver person-centred care to people living with a long-term neurological condition.


3.3.1 Exploring both the disease and the illness experience


The process of engaging the client in a conversation about their life requires careful planning and preparation on behalf of the occupational therapist. Key factors which need to be considered include the following:



  • Selecting the most appropriate environment should ideally be determined through agreement between the client and the occupational therapist. Although there is an increasing shift in the balance of care into the community, the occupational therapist should not assume that the client will wish to be visited within their own home. Preston et al. (2012) identified feelings of intrusion and intimidation when occupational therapists visited clients within their own homes. There was also, on occasions, a sense of feeling disloyal to family and friends when discussions took place within the participants’ own homes with some participants preferring to create some distance between their personal spaces and their discussions about living with a long-term neurological condition (Preston et al., 2012).
  • Resource availability includes the staff resource but should also consider the more practical aspects of travelling for appointments, including distance and journey time in addition to the time of the day. For some people living with a long-term neurological condition, it may take a long time to get prepared in the morning and they will therefore require appointments later in the day. Alternatively, aspects of fatigue may require that the appointment is scheduled earlier in the day. Such variation will be client-determined and needs to be considered within a person-centred approach.
  • Aspects of privacy need to be taken into consideration as the client needs to feel safe to engage in discussion before disclosure can occur. Discussion regarding the presence of family and friends when exploring occupational needs is fundamental in ensuring client privacy and safety. People living with a long-term neurological condition may seek to protect both themselves and others from the reality of their situation, and the occupational therapist needs to be prepared to experience a range of emotions as the client relives the process of receiving a life-changing diagnosis (Preston et al., 2012).
  • Starting a conversation

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Feb 18, 2017 | Posted by in NEUROLOGY | Comments Off on 3: Person-centredness and long-term neurological conditions

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