Loneliness and disability
Rehabilitation services should pay attention to loneliness. It is common, associated with many long-term conditions in rehabilitation, including chronic pain, more common in people with disabilities, and associated with increased morbidity and mortality. It is also a person-centred phenomenon; only the person can judge whether they are lonely and how lonely they are. It is not synonymous with the size of social networks or the number of social contacts. A few interventions may help, but prevention through planning may be a better approach. This post replaces an earlier post and gives an overview. It ends by suggesting that measuring how lonely people are one year after rehabilitation might be a good outcome measure for a service.
Table of Contents
People who are disabled will, as a group, have smaller social networks and experience more loneliness. This is, unfortunately, unsurprising and is associated with and probably secondary to many factors, such as:
- Practical difficulties in meeting and developing relationships.
For example, limited mobility restricts attending social gatherings, altered speech and language limit communication, and chronic pain reduces concentration and drive.
Most stigmatisation is unconscious. We all tend to socialise with people whom we perceive as like us, and many people who are not disabled as different. It takes great courage for someone with a facial skin disorder to join a group where they know no one.
- Low self-confidence.
Many people with a disability have reduced self-confidence and self-esteem, feelings that are often reinforced when they try joining social groups.
Rehabilitation services aim to help patients achieve a reasonable quality of life, and being lonely is associated with a low quality of life. Therefore, we should address this problem. We have two responsibilities. We should campaign with many other organisations for societal changes that reduce loneliness. This is a significant social problem associated with ill health and increased mortality; at least some of the association is secondary to loneliness. At the same time, we should consider each patient if they are lonely and, if so, consider what we can advise or do to reduce loneliness.
What is loneliness?
There are many definitions of loneliness, illustrated in a review by Valeria Motta. Still, most are similar to that used by Eve Escalante and colleagues in 2020: “Loneliness arises from a discrepancy between desired and actual level of social connection,”. This highlights the subjective nature of loneliness and distinguishes it from social isolation, defined in another study as an “objective deficit in the number of relationships with and frequency of contact with family, friends, and the community,”. Loneliness has two distinct facets, emotional and social loneliness. One concerns a close attachment to a person or people, whereas the other concerns having a social network large enough to meet the person’s wishes.
Stephanie Cacioppo and colleagues add a third dimension, collective loneliness, which refers to relationships in the public space. In their figure one, they examine four other studies and divide the definitions and classification used into three dimensions – intimate, relational, and collective – across two conceptual spaces, social and attentional. This approach may help the analysis and, more importantly, when considering interventions to reduce it.
Why does it matter?
As John Cacioppo and Louise Hawkley highlight, it matters because “Social species, from Drosophila melanogaster to Homo sapiens, fare poorly when isolated.”
In a study of 15,000 people in Gutenberg, Germany, Manfred Beutel found that 10% of people reported some loneliness. It was more common in women, people without a partner, and those living alone (unsurprisingly). It was associated with depression, anxiety, and thinking about suicide. The economic burden has not been well established, though a review by Cathrine Mihalopoulos and colleagues suggests excess healthcare costs arise from it.
People who feel lonely report a higher rate of many health conditions and more disabilities. In a study of 999 older people, Constanca Paul and colleagues showed a strong association between psychological distress, measured on the General Health Questionnaire – 12 and feeling lonely. In an analysis of social survey data from over 40,000 people in Germany, Ricardo Pagan showed an association between increasing severity of disability and feeling more lonely; in a third study on data from 17,000 people in England, Eric Emerson and colleagues found that people with a disability were more likely to report loneliness. They concluded, “Loneliness was a particularly significant driver of poor wellbeing among people with disability.”
People with chronic pain also are lonelier. In a study of 11,700 people, Victoria Powell and her colleagues found that 4.9% had a cluster of pain, fatigue, and depression. Patients with this cluster were at a much higher risk of also reporting loneliness. In a longitudinal study on 4,906 people, Anna Loeffler and Andrew Steptoe for those people who were lonely at one time were more likely to have pain four years later and, conversely, people who had pain at one point were more likely to be lonely four years later.
Loneliness and disability.
Sine Lykke and Charlotte Handberg undertook a qualitative study on older adults receiving home-based rehabilitation; they also studied the healthcare professionals involved with the patients. Four themes emerged:
- Unspoken pain. The older adults found loneliness extremely difficult to talk about and could not share their experiences with professionals.
- Gatekeeping emotions. The patients needed clarification about the professionals’ intentions, suspecting some interventions disguised other purposes. Professionals agreed that they did have hidden agendas.
- The patients felt despair and could not see how to escape the loneliness left after rehabilitation ended.
- Awaiting company. Most patients had significant barriers to social interaction and waited for family relatives to visit.
Ricardo Pagan analysed data from a German survey undertaken in 2013 and 2017. He found loneliness was more frequent in people with a disability. It arose mainly when someone moved into a moderate/severe category. Loneliness was also seen in people who emerged from a severe disability back to near normal.
Loneliness can also be measured. An interesting systematic review by Nicole Valtorta and her colleagues found over 50 measures of concepts related to loneliness and classified them on two axes. The first was concerned with the focus of measurement along a continuum between structure (of social relationships/networks) and function (of the relationships). The second was the degree of subjectivity (the person’s opinion) incorporated in the measure, subdivided into four areas: involvement in relationships, perceived availability, perceived adequacy, and emotions or feelings experienced.
Mary Hughes and colleagues developed a three-item brief measure of loneliness. These items were based on items within the widely used 20-item Revised UCLA scale. This measure was used in a telephone survey. Their data suggest good comparability to the full 20-item scale.
One could argue that measuring a patient’s loneliness a year after they leave rehabilitation would be a good outcome measure because:
- Simple, feasible measures exist
- It is relevant to all conditions and disabilities
- It causes significant distress and morbidity
Stephanie Cacioppo and her colleagues have illustrated potential mechanisms (see figure two in their paper). They suggest that people interact with their social environment with a mixture of favourable, attraction and connection, features and negative, repulsion and isolation features. Typically people are in the central part of the spectrum, but if negative feelings predominate, the person feels threatened and starts a cycle of increasing isolation. If this cycle continues for too long, the person begins to experience increased morbidity and risk of death. They relate their theory to animal experiments and the neurophysiological changes seen in isolated animals.
Javier Yanguas and colleagues have also reviewed mechanisms underlying loneliness and its effects on health, considering the many other associated health conditions, such as cardiovascular and metabolic disorders.
Can loneliness be reduced? Charlotte Jones and her colleagues reported a pilot trial on 66 people with hearing impairment. They investigated the effect of adding exercise and education on socialisation to an existing group audiological rehabilitation programme. No additional benefit on loneliness was detected, but it was probably underpowered.
Clare Gardiner and her colleagues undertook a systematic review (in 2016) and identified 39 studies investigating interventions to reduce social isolation and loneliness among older people. Their results suggested some benefit, but the evidence needed to be stronger. A recent trial in 91 people with multiple sclerosis investigated an intervention to increase self-efficacy. The data suggested some possible effects on loneliness, but this is currently uncertain.
Maninder Kahlon and his colleagues investigated a layperson-delivered, empathy-focus programme of telephone calls in 240 adults receiving meals-on-wheels in central Texas in the early months of the Covid epidemic. Most people participating were homebound and single; all were sufficiently disabled to require meals delivered to them. The programme reduced loneliness, depression, and anxiety.
Rehabilitation services should be concerned about their patients’ loneliness because it is more common in disabled people. They must be proactive, recognising that people are reluctant to raise the issue themselves. Further, while it is unsurprising that becoming more disabled is associated with increased loneliness, they must be alert to it in their patients, who, on the surface, do well. A period of severe disability may disrupt pre-existing social networks and relationships, and people may be very lonely when they return to their life. Last, as a measure of outcome, loneliness has the advantage that there is a simple measure unrelated to any particular type of disability.