Background
Intellectual disability and health and social inequalities
Intellectual disability (ID) is a life-long condition characterised by an intelligence quotient (IQ) < 70 and impaired adaptive functioning arising before the age of 18 years.1 The UK prevalence of ID is 1–2%.2 People with ID have complex health needs, but experience substantial inequalities in health, including poorer access to health services, higher rates of physical heath disorders3,4 and higher mortality rates, and, on average, they die 20–25 years earlier than people in the general population.3–5 They have higher rates of mental illness, with a point prevalence of 41%.6,7 The prevalence of depression is the same as that in the general population, but people with an ID are more likely to experience chronic depression.8,9 People with ID have greater exposure to adverse life events and social disadvantage,10 experience social exclusion because of stigma,11 have markedly smaller social networks12,13 and have a higher prevalence of loneliness than other people.14 These factors may increase their vulnerability to depression.14–18
People with ID may experience behavioural side effects from antidepressant treatment (e.g. aggression and agitation)19 and encounter inequalities in accessing psychological therapies.20 There is a need to consider alternative, accessible interventions in the management of depression. One such intervention that has shown some promise is befriending.21
Characteristics of befriending
Befriending is a one-to-one friendship-like relationship that is initiated, supported and monitored by an agency, usually a voluntary organisation in the community.22 There are differences in the practice and implementation of befriending, which lies on a spectrum from being very similar to a friendship, whereby the relationship is reciprocal and equal, and is delivered by lay volunteers, to being a professional and therapeutic relationship with an emphasis on goal attainment, which resembles mentoring.23 Most types of befriending relationships lie mid-way on this spectrum and may involve listening and providing emotional support, but may be prescriptive in terms of the length and duration of meetings. Those involved usually have a discussion about the boundaries of sharing personal information,23 from not sharing any personal details to introducing the befriendee to the befriender’s family or friends. Most schemes also offer training, supervision and ongoing support to volunteers.
Motivation and experience of befriending volunteers
Volunteers are important factors in the successful delivery of befriending and, therefore, it is important to understand the motivations of volunteers. Little is known about the motivations of volunteers who work with people with ID, although they are likely to be similar to those of volunteers who befriend people with other disabilities. Motivations can be categorised into ‘giving’, whereby volunteers have a desire to help others and contribute to society, and ‘getting’, where there is an expectation that they will gain valuable work experience or new skills.24–26 Several studies that have explored the experiences of volunteers befriending individuals with mental illness have reported that volunteers feel empowered and rewarded by their efforts to support the befriendee’s recovery, and that befriending provides volunteers with a different perspective on how they view people with mental health problems, including improving attitudes towards such individuals.25,27,28 Some volunteers with a history of mental illness also report gaining confidence and an increased sense of acceptance.27 Negative experiences have also been described, for example, when there has been confusion about the role of volunteers and they have been regarded as counsellors or carers, or even as a ‘cab driver’, instead of as a friend.25,29 Volunteers also report challenges in being non-judgemental towards their befriendee and difficulties with communication.28,29 Other concerns included dissatisfaction in the recruitment process and limited reimbursement of expenses incurred during activities.30
Experiences of people with intellectual disability
Only one published study has explored the experiences of befriending for people with ID.30 Lack of service user empowerment and involvement was highlighted as a barrier. Befriendees commented that they had little choice over the selection of their befriender and little influence over how often pairs met and what activities they engaged in. Many described difficulties coping with the relationship coming to an end, including feelings of disappointment, anger and despair, and that they were provided with little information from the befriending service about the link ending. This highlighted the importance of managing endings and being clear about the time-limited nature of the intervention at the outset.
Mechanism of action of befriending
The causal mechanisms of befriending have not been fully elucidated, although social support is thought to be relevant. Social support has structural characteristics, such as the number and connectedness of social ties, and functional characteristics, such as providing instrumental or emotional support, information and advice. Social support may improve well-being by acting as a buffer to stress. There is evidence to suggest that it may mediate genetic and environmental vulnerabilities to depression through its effects on neurobiological factors and other psychosocial factors (e.g. coping strategies).31 Perceived social support rather than received social support appears to be related to psychological well-being and, therefore, providing support where it is not needed can be unhelpful.32 The main underlying assumption in befriending interventions is that providing an individual who is lonely and lacking in social networks with additional, enacted support through a befriender will lead to an increase in the individual’s level of perceived support, resulting in improved psychological well-being. Befriending may enhance social support by providing direct emotional and instrumental support, but the befriender can also help to link the befriendee to social activities, which may be sustainable outside and beyond the end of the befriending relationship; therefore, befriending may have longer-term benefits. Befriending may also improve health outcomes thorough its effects on social networks.33
Effectiveness of befriending
Befriending (as an active control delivered by professionals) has been found to have similar effects to cognitive–behavioural therapy34 and acceptance and commitment therapy in schizophrenia.35 There is evidence from a comprehensive systematic review21 that befriending in the general population may have a significant but modest effect on reducing symptoms of depression when compared with no treatment or treatment as usual in both the short term [standardised mean difference –0.27 depressive symptoms, 95% confidence interval (CI) –0.48 to –0.06 depressive symptoms] and the long term (standardised mean difference –0.18 depressive symptoms, 95% CI –0.32 to –0.05 depressive symptoms). The review included studies of paid and unpaid volunteers and befriending delivered in various ways, including face-to-face and telephone contact. A more recent review and meta-analysis36 of befriending by unpaid volunteers examined the effects of befriending on participants with physical and mental health disorders across a range of social and psychological outcome measures. Befriending was associated with better patient-reported outcomes across all primary outcomes, but the effect size was small (standardised mean difference 0.18, 95% CI –0.002 to 0.36). There was limited evidence for the effectiveness of befriending on individual outcomes, such as depression, loneliness or quality of life, when the studies were combined.36 A randomised controlled trial (RCT) of befriending of people with psychosis by lay volunteers provides further evidence for the potential beneficial effects of befriending.37 Participants in the intervention group had significantly more social contacts at the end of the 12-month intervention (adjusted difference 0.52 social contacts, 95% CI 0.04 to 0.99 social contacts) and at 6 months’ follow-up (adjusted difference 0.73 social contacts, 95% CI 0.05 to 1.40 social contacts; p = 0.04), suggesting that befriending may help to reduce social isolation in this group.
Benefits for volunteers and wider society
A systematic review and meta-analysis38 found that volunteering in general had beneficial effects on depression, psychological well-being and life satisfaction, and was associated with a lower risk of mortality in volunteers, although the causal mechanisms for these associations are unclear. The benefits to wider society include economic impacts, such as reduced burden on government spending and improved employability of volunteers; strengthening of social connections between different sectors and organisations within the community; and safer, stronger and more cohesive communities (e.g. inverse relationship between levels of volunteering and crime).39
Rationale for proposed research
Although the benefits of befriending have been explored in a range of disorders, its effectiveness in people with ID has not been evaluated in a randomised trial. A single-arm feasibility study of one-to-one befriending by volunteers that was conducted by a voluntary organisation40 recruited 24 volunteers, of whom 15 were matched with an individual with ID. Overall, 60% of befriendees reported a positive change: 53% reported a decrease in isolation and 40% reported an increase in confidence. The study was limited by the lack of validated outcome measures, the lack of a control group and the lack of follow-up data. The study has not been published in a scientific journal.
One Australian study examined the feasibility of using active mentoring to improve the participation of older adults with ID in mainstream community groups.41 The intervention comprised 29 individuals receiving the intervention and a matched comparison group. The participants in the intervention group reported better social satisfaction than those in the comparison group (effect size 0.78; p = 0.02). Symptoms of depression on the carer-reported version of the Glasgow Depression Scale for people with a Learning Disability (GDS-LD) were also reduced, but not significantly. The study found that the intervention was feasible and acceptable. However, this was a non-randomised study, the sample comprised older adults living in Australia and the intervention is not directly comparable to one-to-one befriending.
Given the dearth of studies examining befriending in people with ID and an insufficient number of data on feasibility, there is a clear rationale for conducting a pilot study prior to a full RCT.
Aims and objectives
The main aim of the study was to determine the feasibility and acceptability of a full-scale RCT to estimate the effectiveness of one-to-one befriending by volunteers for people with ID, compared with an active control group.
The objectives were to:
- examine the recruitment and retention of individuals with ID and volunteers in the trial, and number of successfully matched pairs within the 6-month study recruitment period
- record any negative consequences/adverse effects of befriending
- measure the extent to which the intervention is delivered as intended by the volunteers and befriending schemes
- examine the acceptability of the intervention and study procedures by exploring the views of individuals, volunteers, carers and befriending services
- examine changes in health and social outcomes by carrying out exploratory analyses of the impact of befriending on depressive symptoms measured by the GDS-LD42 at 12 months and other outcomes (e.g. self-esteem, loneliness, quality of life and social participation) at 6 and 12 months post randomisation
- carry out exploratory analyses of the impact of befriending on volunteers’ well-being, self-esteem, loneliness and attitudes towards people with ID at 6 and 12 months
- estimate the sample size required and determine the final trial design for a full-scale RCT
- assess the feasibility of collecting data that would inform a future analysis of cost-effectiveness.