Life goals, the purpose that people see in their lives, are usually related to social participation. (here) One of the general goals of rehabilitation services is to optimise a person’s social participation. Nevertheless, the attention paid to social roles in day-to-day rehabilitation is probably low; there is usually an imperative to achieve some fundamental independence and discharge. (See discussion here) This lack of interest is not fair to patients, and it may also lead to less efficient and effective rehabilitation even in the circumscribed practice often required by funders. This page discusses how paying attention to social roles may help inform the formulation and may improve the service and outcome.

Context

Man is a social animal – and Covid-19 has driven that truism home! When introducing yourself at a party, a wedding dinner, or any other social event where you meet people who do not know you, you will always present yourself in two ways. You are likely to start by explaining your relationship to the host or other relevant person. You will then often describe some of your roles, usually one or more of your work or vocation, interests, or relationship with the person or people accompanying you.

You are very unlikely, at any point, to describe yourself in terms of your performance of activities such as dressing or washing, doing domestic chores, or doing more complex activities such as constructing an Ikea flat-pack successfully! Yet, in rehabilitation, we will often describe patients in terms of their (in)dependence on undertaking activities. That is better than in many healthcare settings where people are (still) often described first by their diagnosis: “This is Simon Brooks, a 57-year-old man admitted two days ago with a stroke affecting his right side.“. Occasionally the word, man, may be replaced by his job, engineer.

Depressingly, when I visited medical wards regularly (up to 2016) to see patients for rehabilitation, it was not uncommon to ask about family, visitors, and the housing situation to discover that no one knew anything. And these patients had often been in the hospital for two or more weeks. I sincerely hope there is more awareness of the importance of social functioning now, but I doubt it.

However, there is a problem. What is social participation? Barbar Piškur and her colleagues explored this question in 2013 and concluded, “A clear definition for participation or social participation does not yet exist.” (here) This lack of definition is probably still true.

The important message is to give much greater attention to the social situation, roles, relationships, and functioning within social networks than you may have done so far.

The graphic illustrates how social functioning can be analysed, including a simple categorisation of the five main areas of social functioning to consider. As is being recognised, loneliness is perhaps an essential aspect of social functioning and is also a potential good single outcome measure; measures exist, including a three-item one.

As in all other analyses, the graphic shows how each domain of the biopsychosocial model of illness may impact social function and that the relationship can be positive or negative. For example, the pathologic diagnosis may lead to an active social position in disease-specific organisations.

Measuring social participation.

Notwithstanding the debate about the exact meaning of ‘social participation’, I doubt anyone would disagree that loneliness, the perceived low level of social contact, is a robust measure of social connection. People who state that they are lonely are “sad because one has no friends or company”. [Oxford English Dictionary] I have suggested here that measuring loneliness would be a relevant and straightforward outcome measure because:

• it can be measured quite easily (here)
• it is associated with other adverse outcome. (here)
• it is more relevant and person-centred than social isolation (here)
• it is common in people with a disability (here)

There are measures of the social networks and support a person has. Joyce Siette et al. (2015) found eight measures used with people with psychotic disorders (here). Deirdre McLaughlin and colleagues assessed 680 women to assess the importance of social networks in supporting people with disability. They used the Duke Social Support Index (here) and found that “support provided must be subjectively perceived to be relevant and adequate’, and that network size alone was not significant. (here)

A systematic review of measures of social participation identified 12 scales. The one considered most suitable for people with aphasia was the Community Integration Questionnaire. (here)

Thus, though none may be ideal, you can find measures of a person’s social networks and social participation. More clinically relevant, there are measures of loneliness, the patient-generated perception of social participation, assessed by the patient against the level they would like. Contacts within a network can be classified as shown in the graphic here, in the top right corner.

Patient roles to combat loneliness?

Having social roles allows one to have a sense of purpose and is essential. People with a disability often have very practical difficulties in finding and maintaining social positions for various reasons. The only roles that become available are roles associated with being ill. A patient may enter the sick role, become an ‘expert patient’, or work as an advocate for people with the same problem, perhaps individually or as a member of a charity linked to their disease.

These roles can be very good for a patient, instilling a sense of being valued and of achievement as well as leading to a considerable degree of social integration and the development of new friendships.

They can, unfortunately, be harmful. People who enter a passive patient role, attending hospital outpatient services, seeing their family doctor, paying for private therapy will be wasting their time and, sometimes, their money. They miss the opportunity to find new friends and lose a sense of purpose.

Sometimes they can join an inward-looking group who have or develop incorrect beliefs about their illness, impede their recovery, or worsen their state. Unfortunately, some patient-support groups are like this, and healthcare professionals or social service workers may not realise this when they refer someone or suggest joining such a group.

In practice, one should encourage patients who wish to help themselves by using their patient status. One should lessen the risk of patients entering the sick role by avoiding routine follow-up and education in self-management.

Analysing social participation.

The MindMap graphic sets out a systematic way to consider social participation. You need to consider each domain of the biopsychosocial model from two inter-related perspectives: are there any factors causing or contributing to limited social functioning, and, more importantly, are there any interventions possible within the domain that will increase social participation.

Some people criticise the holistic approach arguing that social role function and social matters, in general, are not matters that health services have any responsibility for and that, in addition, health services cannot alter social participation. I cannot entirely agree with both of these arguments.

To state that health services have absolutely no interest in social matters is an extreme position that I doubt anyone holds. People give health care, and people are naturally concerned about social functioning. Second, all health services strive to improve a person’s quality of life and well-being, and social role functioning is a significant contributor to both. Next, it is well-established that social factors such as poverty, poor housing, lack of social support and loneliness all have substantial adverse effects on the health of individuals. Any healthcare organisation or individual who holds the extreme position put forward will fail to serve their patients as well as they can.

To state that health services cannot alter social aspects of health is simply untrue. Public health services substantially influence illness by providing evidence supporting interventions that reduce mortality and morbidity at a population level. At an individual level, the treatment of disease often avoids a loss of social roles, controlling symptoms such as pain may allow someone to return to work, and providing rehabilitation such as a prosthetic leg may dramatically alter social participation.

I agree that health services cannot provide friends, partners, or social networks. However, in the strictly commercial healthcare system in the United States, healthcare organisations invest in housing, transport and even food from the health budget. (here)

I also suggest that understanding what social roles a person has, what they would like, and what you might be able to tell can lead to valuable insights into a person’s situation and may lead to change. Discussing the importance of social participation with a patient can help them reduce their focus on disease and impairment.

Conclusion

Person-centred care requires one to know the person, and people think of themselves in terms of their social roles and networks. Therefore, it is imperative to pay attention to a person’s social role functioning if only to understand their situation better; it will also increase their engagement in rehabilitation. The team should not expect to alter social participation directly in the way that rehabilitation might improve the performance of activities. Instead, the multiprofessional team must plan indirect interventions. For example, by raising the question about future new social roles, you may help the person alter their social goals and expectations.