Social participation and rehabilitation.
Last edited: March 27, 2025
The patient had previously been active intellectually, creatively, physically, and socially; after his ischaemic brain damage a year ago, he was left requiring 24-hour care, with aphasia limiting communication. While discussing his future, his daughter mentioned the magnitude of his losses and how it would distress him. She initially proposed keeping his study room the same when he returned home to allow him to feel continuity with his past. She then reflected that he had changed, and maybe it was inappropriate because he would never return to that life.
Our discussion reminded me of the 2024 British Society of Physical and Rehabilitation Medicine (BSPRM) medical student essay prize, “I Am Not My Self: Reconceiving Identity in Rehabilitation Medicine.”, and two papers I co-authored with Ruth Dalemans and colleagues in 2010, “An investigation into the social participation of stroke survivors with aphasia.” and “Social participation through the eyes of people with aphasia.” The issues raised concern selfhood, identity, and the effects of acute brain injury. The problems are equally relevant in any disabling illness, not simply those affecting the brain and communication. I will explore them.
Table of Contents
Introduction
Rehabilitation’s greatest strength, its unique selling point, is its holistic approach, which considers the patient as a person. Its greatest weakness is focusing on its specific treatments, treating the person as a patient, and overlooking the priority a patient gives to being a person.
This post discusses the crucial issue of being a person, using the impact of aphasia as an example. I consider how a rehabilitation service should use its limited resources to achieve the best long-term outcome. Some ideas are covered in more detail in a post on personal factors in rehabilitation, where I investigate how one should characterise a person.
Social participation.
Participation in social groups is vital; we only achieve personhood through it: “What is clear in any case is that our personal identity is not something that exists independently of our social interactions and commitments. Our social world gives us our identity, or it is that world from which we choose our identity. Personal identity is social identity.” [David Carr, 2020] Our personhood emerges from our social interactions, the roles we develop, and how others react to us when we play those roles.
Maslow recognised the importance of others to one’s sense of identity in 1943 when developing his theory of motivation. Two of the five key motivating factors involve social participation:
- Affiliation: the need to love and be loved, belong to social groups, and have friends.
- Esteem: the need to be well thought of, respected by others, and have self-esteem.
He highlights the need to belong and be valued as a group member; they are two sides of the same coin.
Loneliness is the absence of sufficient social contact to satisfy these needs. It is a public health problem associated with ageing and disability and likely linked to increased ill-health. Two aspects of loneliness related to social participation are emotional and social loneliness. Loneliness happens to someone who once belonged and was valued and is no longer valued or belonging.
A study of 93 significantly disabled people identified three major life-goal priorities as being extremely important:
- Relationship with my partner or my wish to have one (n = 37)
- Relationship with my family, including those not living in my home (n = 25)
- Ability to manage personal care (n = 12)
Social relationships, particularly with relatives, are by far the most crucial concerns of recently disabled people. This is consistent with studies on older European adults, which identified social networks, particularly those involving close family, as associated with greater life satisfaction.
In summary, a person’s social interaction is crucial because it establishes and maintains a person’s identity and well-being.
Communication and social participation.
Participation in social activities depends on communication, shared activities, and shared interests.
Aphasia, impairment in the use of language, evidently alters participation in social groups. Significant cognitive impairments, dysarthria, and limited mobility are other difficulties that will impact social participation. Unsurprisingly, rehabilitation teams will focus on increasing speech clarity, the patient’s mobility, or language used to improve social participation.
Aphasia after stroke improves for 3-6 months but is then stable. Although a systematic review found speech and language therapy may reduce some losses, the effects are limited and unlikely to impact social participation significantly. Other treatments have limited, if any, effects and are insufficient to allow good communication.
Ruth Dalemans and colleagues studied 150 people with aphasia after stroke, finding that social participation was significantly reduced with aphasia and dependence on personal daily activities (including mobility), which were the two main factors associated with the severity of loss.
Aphasia and other impairments must all be set in a context. Altering the physical or social context may be equally or more effective at improving social participation. For example, teaching communication partners how best to communicate or providing transport so people can access appropriate groups will increase engagement in social activities.
In an associated qualitative study on 13 patients, she concluded: “Social participation is a theoretical concept that people with aphasia do not use. Instead, people speak in terms of engagement, involvement, having a feeling of belonging. People with aphasia describe the degree of engagement in activities in social life domains (i.e. the quality of activities) as more important than the quantity of performing activities.”
People want to be involved in a social activity, even if their contribution is limited. Being present satisfies Maslow’s ‘need for affiliation’. This should not be surprising, as many healthy people participate in group activities without significantly contributing. If group members value the person’s group membership, it may also help satisfy their need for esteem.
This analysis suggests that the central aspect of social participation is being present, and while communication is typically part of this, it is not essential. This insight may also apply more broadly to people with most other conditions, such as mechanical speech difficulties, limited mobility, and mental health problems such as anxiety or depression. Because many impairments and disabilities cannot be alleviated, we should pay more attention to altering contextual factors.
Is ‘being there’ Social Participation?
The concept of social participation is ill-defined.
Mélanie Levasseur and colleagues analysed definitions of social participation and suggested six levels existed:
- doing an activity in preparation for a social event,
- being with others,
- interacting with others without doing a specific activity with them,
- doing an activity with others,
- helping others,
- contributing to society.
The first three can be achieved despite significant communication and other activity limitations. The second one, being with others, is what Ruth Dalemans found in her study.
Barbara Piškur and colleagues also reviewed social participation and concluded that it was better to consider social roles because they were already well-defined. This alternative approach helps to reconceive the concept of social participation in rehabilitation. Rather than measuring and optimising social participation, which is impossible, we could optimise role performance and satisfaction.
It is natural for a person’s role in any group to change. For example, in formal groups such as committees, someone may only hold a role for a specified time. More naturally, as different people with different interests enter and leave a group or a person’s abilities or interests change naturally, their position in a group may change. Developing a disability might lead to an altered, less demanding role.
For example, returning to the person described initially, he could host group meetings at home, with a carer providing hospitality and another group member leading the group activity. He would have a relatively less active but no less important role in the group and could listen, watch, and enjoy others interacting.
In other words, in rehabilitation, we must always ensure that the person has or develops a feeling of belonging. This is crucial as we move from childhood to adulthood, as shown by Tim Bärwalde and colleagues who studied the adolescent concept of social participation. Thirty-four adolescents with and without disabilities were interviewed.
Their data suggested that interactions could be active or passive. Passivity occurs when the context requires it, when a person cannot perform an activity, or when they do not anticipate enjoyment. All interactions engendered the feeling of belonging, which was associated with increased well-being.
They summarised their findings: “The adolescent concept of social participation is a multidimensional construct and seems to be independent of the presence of physical disabilities or chronic diseases. The root of the concept is represented by reflexive interaction with the social environment as well as the shaping of this social environment.”
You should note that, interestingly, disability and disease had little influence on social engagement.
Reconceiving identity.
The General Theory of Rehabilitation emphasises that change and adaptation are central processes in life, regardless of illness. Rehabilitation facilitates adaptation to changes needed because of illness. Adaptation extends to ambitions, hope, and self-identity.
Self-identity is one being a person, and personhood in the biopsychosocial model of illness crucially requires integrating body and mind, often referred to as the embodiment of the person. Drummond (2020) expressed this clearly: “A person as a center of conscious decision-making (rather than instinctual behavior) is an embodied, social and historical, practical, and reflection-capable minded entity. The fact of embodiment incorporates a biological dimension into our understanding of personal identity.”
In plain English, the person does not have a body (separate from the person); the body and person are coterminous.
The figure below shows this, contrasting the usual Cartesian dualistic view of the mind and body as separate with the integrative view that the mind and body are one person. This concept is well aligned with the biopsychosocial model of illness—my post on personal factors in rehabilitation gives a full explanation.
The embodiment of the person implies that bodily changes may change the person, and this is undoubtedly true. For example, facial scarring or limb amputation alters the person, and the limp caused by a stroke may have a more significant impact on the person than the brain damage.
The narrative component of a person, the consistency preserved over time with only slow change, is also vital in rehabilitation. People change considerably over 50 years, but an illness sometimes imposes substantial change over a short time. The challenge facing the person and their rehabilitation team is how much of the past one should strive to retain.
In the case given at the beginning, should we keep his study as a reminder of a past role and activity to provide continuity? Would that cause frustration and sadness or security and satisfaction? There is no answer, but currently, rehabilitation services may not consider helping guide role change required after an acute loss – or even in people with progressive disorders.
The questions one might ask to stimulate planning are:
- Can an alternative role be developed within an existing group?
- Repeated for any group that the person values
- Can a current role be transferred to another existing group?
- Or to a new group that the person values
- What areas of interest does the person have where a group may be found where they could take on a role?
- Or could they set up a group? (e.g. a support group for other people with their condition.)
When considering roles, remember that many do not require extensive or demanding activities, provided that the person and the group feel that being in the group is worthwhile. Imagine yourself in a strange town where you know no one. You might go to a cinema alone, not because you wish to see the film but because you are part of an audience. Or you might go shopping, not to buy anything but to be part of the many people shopping.
Conclusion
Most patients seen in a rehabilitation service will live for many years, and rehabilitation is only a short phase in their lives. Additionally, the person will arrive with many years of life behind them and thus have expectations and hopes for their future. Catalysing their inevitable adaptations to changed circumstances is crucial to have a significant effect over the years. The team must ensure appropriate resource allocation to adapt roles and personal identity rather than focusing entirely on the immediate and more resolvable issues. The SMART goal may be to improve mobility, but the smart goal is to enable role development within existing social networks to provide a better long-term quality of life.