Exploratory Research Study Of Peer Support Provision For People With Anxiety



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Exploratory Research Study Of Peer Support Provision For People With Anxiety





Karen Machin, Louise Thomson,

Laurie Hare-Duke, Marissa Lambert


Draft Report presented to

Anxiety UK

October 19th 2016



Introduction

Peer support is commonly defined as 'offering and receiving help, based on a shared understanding, respect and mutual empowerment between people in similar situations' (Mead et al., 2001). Benefits of peer support have included greater empowerment, confidence and self-esteem for those receiving the support (Davidson et al., 2012; Repper & Carter, 2010; Bradstreet, 2006) as well as for the peer supporters themselves (Ratzlaff et al., 2006; Salzer & Shear, 2002).

The Institute of Mental Health (IMH) has an accredited course for peer supporters, which is commissioned by organisations, including NHS Trusts and voluntary sector agencies such as Self Help Services. The training team draw on their experience of national implementation from clinical, academic and personal perspectives. The training sessions are delivered to small cohorts of 16 learners in settings provided locally by the commissioning organisations.

However, this mode of delivery, as for other self-help groups, potentially excludes people with anxiety disorders that prevent them from attending group activities. Many people have anxieties that make it difficult for them to leave their house for training or support, such that the need for regular attendance at appointments can increase their anxiety.

To address this, the research project was funded by the Anxiety UK’s Katharine and Harold Fisher Anxiety Research Fund to explore peer support needs for people who experience anxiety.

The study aims to further understand what peer support should look like for people who are unable to attend traditional face to face groups or training because of their anxiety. Specific objectives are to:


  • consider the existing knowledge around peer support and anxiety

  • understand the views of people who experience anxiety

  • explore in more detail the experiences of some people who experience anxiety

Background


A rapid evidence review of current knowledge about effective support and training methods for people who experience anxiety was undertaken. Relevant academic, policy and grey literature was identified through a number of databases (PubMed, Open Grey, and GoogleScholar). Search terms were developed which include the following subject headings and truncation: peer support, anxiety, support groups, training, online.

Definition of the term 'anxiety'

The literature includes a range of 'disorders' including those using the word 'anxiety' (such as 'social anxiety disorder', 'generalised anxiety disorder') and more general terms, related to stress (such as 'PTSD' and 'acute stress') and phobias (especially 'agoraphobia'). In contrast, searches around the term 'peer support' and 'anxiety' tend to return studies where levels of anxiety have been used as an outcome measure. These are often in relation to a specific stressor with a long list including other health conditions (cardiac events, diabetes, breast cancer) and specific life events (transitions between schools, becoming a parent, visits to the dentist).

For this project, we originally specified an interest in people whose anxiety had prevented them from accessing traditional groups for support or for training. We anticipated this might include, but not be limited to, social anxiety disorder as well as agoraphobia. However, the literature suggests that people with social anxiety disorder may access groups specifically to overcome their challenges, with an awareness that the group will offer a safe space.

For the purposes of this project, AUK advised us to take a broad view on anxiety, as their members will cover the range of definitions and experiences.

Treatment and support for anxiety


Peer support is of increasing interest across the general mental health agenda, with research showing positive impacts for the supporter as well as the person supported, in most but not all studies (Repper, 2013a; Simpson, 2014; Lloyd Evans, 2014). This increased emphasis on the knowledge and skills of people with lived experience is part of a wider transformation across health services that values such expertise and aims for co-production (SCIE, 2013; National Voices, 2015). For this project, we wanted to explore the understanding of peer support for anxiety, specifically for people who are unable to attend groups because of their anxiety. Initial searches confirmed that this appears to be a gap in the literature.

The literature places an emphasis on the 'gold standard' of randomised control trials (RCTs) with quantitative measures of effectiveness. Consequently, there are many studies using traditional quantitative research designs to investigate the effectiveness of treatments including medication as well as talking therapies, including treatment for other problems which may overlap with anxieties, such as sleep and substance use, as well as an acknowledgement that people may experience several co-morbid anxiety disorders. The studies used a range of standard measures including those which are not specific to disorders such as Beck Anxiety Inventory (Beck et al, 1988) as well as those which focus on a specific disorder (such as Brief Social Phobia scale (Davidson et al, 1991) or Mobility Inventory for Agoraphobia (Chambless et al, 1995)). However, Cochrane reviews still suggest that the research is low quality (for examples see Ipser et al, 2015; Pompoli et al, 2016; Roberts et al, 2016). There are few case studies or qualitative descriptions from people with lived experience, with very little on peer support as it specifically relates to anxiety. For example, literature searches using 'anxiety treatment' OR 'anxiety management' AND 'peer support' produced very few results (<10 using various databases): one search offered 5 results, each of which was related to anxiety about other life events (including related to health conditions of arthritis, diabetes, COPD). Searches of 'agoraphobia' AND 'peer support' returned even less: Medline gave one result produced in 1999 (Segee et al, 1999), CINAHL and PubMed each returned no results.

There is however a growing literature referring to internet based treatments, with a recent Cochrane review describing it as a 'fast moving area' (Olthuis et al, 2015). Areas of exploration include comparisons of tailored treatments with ‘disorder-specific’ treatments (Berger, Boettcher & Caspar, 2014), and ’self help' or 'self guided' access to information, including courses, in contrast to 'therapist supported' interventions. Other studies consider adding telephone support, including from peers, to internet based treatment.

Online delivery of support


Access to the internet has increased from a widely reported 2.6m internet users globally in 1990, to 3.42 billion in 2016 with a 46% global penetration (http://wearesocial.com/uk/special-reports/digital-in-2016). New developments since 2006 have included social media such as facebook and twitter, with snapchat and instagram as relatively recent newcomers, and also the expansion in use of mobile platforms. Within this context, online delivery of support is an anticipated development, although reviews emphasise the current lack of good quality studies. Naslund et al (2016) emphasise the need for research to explore risks as well as benefits, and note the methodological challenges for research using social media.

The use of the word ‘support’ in relation to technology and health, has been broken down into four functions: information provision; screening, assessment, and monitoring; intervention; and social support (Lal & Adair, 2014). Peer support itself is not a specific intervention. Organisations are developing their own role descriptions related to their specific settings, but, for the majority, peer support could be assumed to be included within social support, with some overlap into information provision. Thus the use of online does have relevance for peer support.

A realist review (Ziebland & Wyke, 2012) identified 7 domains through which online experiences could impact on health including finding information, feeling supported, maintaining relationships, affecting behaviour, experiencing health services, sharing a story and visualising disease, although they suggest that conflicting information or information overload may be a cause of anxiety. These domains are all of relevance to peer support and may be a useful foundation when considering developing any online peer support. The domain of ‘sharing a story’ may have a particular relevance given the emphasis on skills for narrative and life story work to support peer’s concerns about disclosure.

Evidence about online support groups has moved from taking an overview irrespective of health condition, towards being more specific about the mental health experience of the target group. An early systematic review of the effects of health-related online peer support suggests that the emphasis has been on depression rather than anxiety (Eysenbach et al, 2004), although Melling & Houguet Pincham (2011) argue that, even in depression, inconsistent findings emphasise the need for additional research to support anecdotal evidence of benefits. In a study looking at the potential of a virtual clinic, that included both professional and peer support, anxiety was among the top rated topics of interest for University students (Farrer et al, 2015).

There are mixed views about the provision of online groups. There are numerous suggested benefits including help seeking, decrease in symptoms, empowerment, support, reciprocity, coping strategies, learning from shared experiences, decreases in social isolation, and increase in computer confidence. Concerns about online peer support include the challenge of conveying emotions and the potential for misunderstanding. The potential for inappropriate behaviours and the potential for a decrease in real life relationships are also mentioned, with anonymity seen as both a positive (enabling disclosure) and a negative (a barrier to building trust).

Online social capital could benefit people who self-conceal, specifically by developing bridging capital, such that heavy internet use, even addiction, could provide mental health benefits from increased social interaction (Magsamen-Conrad et al, 2014) and reduced internalised stigma (Thomas et al, 2015). However, conversely, there are suggestions (Lawlor & Kirakowski, 2014) that dependency on online support groups may be a form of social avoidance and consequently have negative effects on both self-stigma and recovery. Kaplan et al (2011) also found that people who participated more, even if they said they benefitted from the online group, may still have increased levels of distress. A further question of who would prefer to be supported in this way or at what points in a pathway would be best suited to online intervention is not widely addressed in the literature beyond general suggestions that young people may be more familiar with digital delivery including mobile platforms (McColl et al, 2014).

The overall picture is therefore mixed and would support a conclusion that different people need different support at different times. Online peer support should be one part of an offer of support that might be particularly attractive to certain groups of people, including as a gateway to other forms of support.

Methodology

3.1 Online Survey


An online survey (Appendix 1) was developed to gather a wide range of perspectives on the use of online peer support. Items for this survey sought to gather information on what people’s experiences of online peer support have been, how important online peer support is to people, what training a formal peer supporter should have in order to facilitate online peer support. Survey monkey was used to host the survey, and participants were invited to take part in the survey via two methods: an email to Anxiety UK’s membership of approximately 1500 people; and via a link to the survey posted on Anxiety UK’s and IMH’s social media channels. The survey went live on 22nd June 2016 and was closed on 2nd August 2016. The results of the survey were analysed using descriptive statistics to examine frequencies and mean scores of the survey items.

3.2 Qualitative Interviews


All participants in the online survey were invited to express their interest in being interviewed to explore in more depth the needs of people who experience anxiety. We conducted telephone interviews with six people who had responded to the online survey. A semi-structured interview schedule was used to guide the interviews (Appendix 2). Interviews were audio-recorded with the consent of all participants and transcribed anonymously. Thematic analysis was used to draw out the key themes.

Results

4.1 Analysis of Online Survey

4.1.1 Sample Characteristics

A total of 391 respondents completed the online survey, and the full demographic breakdown of the sample is shown in Table 1. Of these, 216 (55%) were recruited via AUK’s internal membership email, and 177 (45%) via a link posted through Anxiety UK’s social media channels of Twitter and Facebook.

Table 1. Sample characteristics


Demographic

n (%)

Age 16-24

25-64


65+

Prefer not to say



60 (15.9)

293 (77.9)

19 (5.1)

4 (1.1)


Gender Male

Female


Prefer not to say

102 (27.2)

271 (72.4)

1 (<1)


Ethnic group Asian/Asian British

Black/African/Caribbean/Black British

Mixed

White


Other

Prefer not to say



7 (1.8)

2 (<1)


3 (<1)

352 (93.6)

4 (1)

8 (2.1)


English region East Midlands

East of England

London

North East



North West

South East

South West

West Midlands

Yorkshire and the Humber


32 (9.4)

29 (8.5)

55 (16.2)

14 (4.1)


52 (15.3)

66 (19.5)

41 (12.1)

22 (6.5)


27 (7.9)

The majority of respondents were white (94%), female (72%) adults of between the ages of 24 and 64 (78%). Every English region was represented within the sample, though this ranged from 14 respondents from the North East to 66 from the South East, and fifty people did not respond to this question.

The majority of respondents reported that they had been given an anxiety-related diagnosis by a medical practitioner such as a GP or psychiatrist (89%) and experiences of anxiety were described as being either moderate (41%) or severe (54%), with less than 5% of the sample describing only mild symptoms (Figure 1).

Fig 1. Self-reported Experience of Anxiety


4.1.2 Experience of Mental Health Services and Peer Support

The majority of respondents had no previous experience of peer support. This included 76% of participants never having received group-based therapy for anxiety, 79% not having previously attended peer support groups face-to-face, and 83% not having used online groups. The only exception was that just over half (53%) of respondents had used internet mental health support services, such as online CBT or FearFighter (a cognitive behavioural therapy-based online self-help course specifically for treating panic and phobia). It is worth noting that, whilst some of these include support from a healthcare professional, some can be accessed in an unsupported manner.

Of those who had not used such services, 37% had never attended group-based therapy due to anxiety and likewise 25% had not attended peer support groups for this reason. Anxiety also prevented 23% of respondents from completing their course of group-based therapy. Very few respondents had previously undergone peer support training (5%), with 25% citing reasons of anxiety and 33% believing that online training would have been more accessible to them.

Responses were analysed to examine differences between those who reported having moderate anxiety (n=149) and those who reported having severe anxiety (n=194) (Table 2). Chi Square tests were used, and valid responses included in the analyses, with those responding ‘not applicable’ or ‘prefer not to say’ being excluded from each Chi Square test. The results showed that people who self-reported severe anxiety were significantly more likely to have been unable to attend and complete therapy and unable to attend peer support groups or peer support training due to their anxiety than those people with moderate anxiety.

Table 2. The Experiences of Mental Health Services


Mental health support service

Total

sample


Anxiety severity (n, %)

Differences

Moderate

Severe

Chi2

Sig

Received group-based therapy for anxiety

Yes


No

80 (23.53)

260 (76.47)

27 (19.42)

112 (80.58)

50 (27.17)

134 (72.83)

2.62

0.106


Been unable to attend therapy due to anxiety

Yes


No

Prefer not to say

Not applicable

127 (37.2)

118 (34.6)

2 (<1)


94 (27.57)

37 (26.43)

56 (40.00)

2 (1.43)


45 (32.14)

88 (47.83)

54 (29.35)

0

42 (22.83)


11.11

0.001


Been unable to complete therapy due to anxiety

Yes


No

Prefer not to say

Not applicable

78 (22.9)

107 (31.4)

2 (<1)


153 (45.0)

20 (14.29)

50 (35.71)

1 (0.71)


69 (49.29)

58 (31.69)

49 (26.78)

1 (0.55)


75 (40.98)

11.28

0.001


Attended peer support groups

Yes


No

Prefer not to say

68 (20.0)

269 (79.3)

2 (<1)

26 (18.71)

112 (80.58)

1 (0.72)

41 (22.40)

141 (77.05)

1 (0.55)

0.64

0.422


Been unable to attend peer support groups due to anxiety

Yes


No

Prefer not to say

Not applicable


84 (24.7)

111 (32.7)

3 (<1)


141 (41.5)

24 (17.14)

55 (39.29)

2 (1.43)


59 (42.14)

59 (32.42)

48 (26.37)

1 (0.55)


74 (40.66)

11.28


0.001



Used internet-based support services for anxiety

Yes


No

Prefer not to say

56 (16.4)

283 (83.2)

1 (<1)

80 (57.14)

59 (42.14)

1 (0.71)

89 (48.37)

95 (51.63)

0

2.68

0.102


Used internet-based support groups

Yes


No

Prefer not to say


180 (52.7)

160 (46.9)

1 (<1)

21 (15.00)

188 (84.29)

1 (0.71)

35 (19.02)

149 (80.98)

0

0.85

0.358


Undergone peer support training

Yes


No

17 (5.1)


313 (94.8)

6 (4.38)


131 (95.62)

11 (6.21)

166 (93.79)

0.507

0.476


Been unable to attend training due to anxiety

Yes


No

Prefer not to say

Not applicable

82 (25.0)

97 (29.5)

2 (<1)


147 (44.8)

32 (23.70)

47 (34.81)

0

56 (41.48)


50 (28.25)

39 (22.03)

2 (1.13)


86 (48.59)

4.114

0.043


If anxiety has previously been a barrier, would online training be more accessible?

Yes


No

Prefer not to say

Not applicable


91 (32.5)

16 (5.7)

3 (1.0)


170 (60.7)

36 (30.00)

4 (3.33)

1 (0.83)

79 (65.83)


53 (35.81)

10 (6.76)

2 (1.35)


83 (56.08)

0.718


0.397



4.1.3 Improving Services for People with Anxiety


Over half the sample (54%) reported that current services were not appropriate, and that online services would be more accessible (71%). Those with self-reported severe anxiety were significantly more likely report that current services were inappropriate (Table 3).

Table 3. Improving Services






Total

sample


Anxiety severity (n, %)

Differences

Moderate

Severe

Chi2

Sig

Are current services appropriate?

Yes


No

Prefer not to say

121 (39.5)

166 (54.2)

19 (6.2)

57 (45.60)

58 (46.40)

10 (8.00)

58 (34.73)

100 (59.88)

9 (5.39)

4.512

0.034


Would online services be more accessible?

Yes


No

Prefer not to say

Not applicable

222 (70.7)

76 (24.2)

7 (2.2)


9 (2.8)

92 (72.44)

28 (22.05)

1 (0.79)


6 (4.72)

123 (71.51)

41 (23.84)

6 (3.49)


2 (1.16)

0.104

0.746

Of the 309 respondents who answered the question of the main barriers, a range of issues were prevalent amongst the sample with at least a third of respondents citing each possible barrier with the exception of conflict with family commitments (11%) (Table 4). People with severe anxiety were significantly more likely to report their feelings of anxiety, waiting times and travel/distance to services as barriers than those people with moderate anxiety.

Of the other barriers, the majority of respondents (n=281) gave no response. Of those that did respond answers relating to the themes of finance, service availability, lack of understanding within healthcare, physical and psychological barriers were noted.

A total of 247 individuals did not give a response to the question as to the other ways to make services more accessible. Of those who did response, many cited lack of information, non-face-to-face mediums (for example, web chats), improved service hours (including 24 hour support as well as out of hours appointments), community services (including home visits and local groups) and reducing waiting times.

Regarding the accessibility of peer support training programmes in particular, suggestions included more information, non-face to face mediums (including online), one to one support during training, locating training in the community (including local access and home visits) and flexibility in time scheduling.

Table 4. Barriers to Accessing Services


Barriers to accessing services


Total

sample


Anxiety severity (n, %)

Differences

Moderate

Severe

Chi2

Sig

Lack of information

Stigma/negative attitudes of others

Feelings of anxiety

Waiting times

Travel/distance

Conflict with work commitments

Conflict with family commitments

Prefer not to say



117 (37.8)

111 (35.9)

186 (60.1)

178 (57.6)

111 (35.9)

115 (37.2)

34 (11.0)

4 (1.2)

48 (38.10)

41 (32.54)

65 (51.59)

62 (49.21)

37 (29.37)

54 (42.86)

11 (8.73)

2 (1.59)


61 (36.31)

68 (40.48)

117 (69.64)

107 (63.69)

73 (43.45)

54 (32.14)

22 (13.10)

2 (1.19)


0.098

1.944


9.953

6.180


6.102

3.556


1.376

0.084


0.754

0.163


0.002

0.013


0.014

0.059


0.241

0.771


Any other barriers experienced?

(open question)

Financial

Poor service availability

Lack of understanding/support

Physical health and psychological barriers Other



24

27



24

23

23



-

-



-

-

-



-

-



-

-

-

-

-



-

-

-



-

-



-

-

-



Are there any other ways in which services for anxiety could be made more accessible? (open question)

More information

Telephone and online communications

Improved service hours

Community services

Reducing wait times

Other

20

23



15

31

34



28

-

-



-

-

-



-

-

-



-

-

-



-

-

-



-

-

-



-

-

-



-

-

-



-

Are there any others ways in which peer support training programmes for people with anxiety could be made more accessible? (open question)

More information

Online/text service

One on one support

Community based

Flexibility in hours of access

Other

25

17



8

10

7



9

-

-



-

-

-



-

-

-



-

-

-



-

-

-



-

-

-



-

-

-


-

-

-



-


4.2 Qualitative Interviews


A total of 94 people who completed the online survey agreed to be contacted for interview. The majority of people only included email addresses for contact, while some only provided phone numbers. Most people did not respond to further communication. Three people were in contact, but chose to withdraw before the interview.
Six people were interviewed. They all identified as female and with a diagnosis of an anxiety-related disorder, across a range of severity. One person described herself as Asian/Asian British while all others were white. Interviews were recorded and transcribed and data was analysed thematically to identify themes emerging from the data concerning:

4.2.1 Accessing Support

Everyone, including people whose experience of anxiety stretched back 20 years, could remember the challenges of first accessing support. Many people described the first point of call as the GP. However, several criticised the medical focus, with GPs seen as likely to offer medication and have little awareness of local support groups. Local services are also stretched with long waiting lists and limited resources. Services were in the process of being recommissioned, with name changes being confusing and making the access process more challenging. Once people had taken years to seek help, they needed a more urgent and timely response. When services were not helpful for people, it deterred them from trying again. Several people said there were no groups in their area, but emphasised this was something they’d like to try:

“Seriously, I'd be there. If somebody phoned me up and said there's a group [her name] at 6 o'clock, I'd be there.”

4.2.2 What helps


While not everyone used the word ‘recovery’, people did talk about concepts of ‘living with’ and ’coping’, and also the length of time it can take. One person mentioned the years it can take to recognise that ‘it’s not my fault’. People then went on to know their own limits, not taking on too much, with ‘treats not torture’, and encouragement from others was helpful. They also valued being able to talk:

“you need someone to pat you on the back and say well why don't you try this”

“I would love to talk to somebody about it.”

They also acknowledged that different approaches were needed at different times. At the start, telephone support could help build up trust, so that someone could then get to a group with each new step giving a sense of achievement:

“if you can do it once then you know you've done it and it does give you a lift”

Does peer support help?

Where people had been able to access peer support groups, they were very positive about it:

“I think that would undoubtedly do justice for sort of, people who suffer with anxiety and panic attacks, 100%, 100%”

The mutuality and reciprocity of peer support were key themes, with a fundamental understanding that peer support is provided by people who are going or have been through a similar challenge, and that people both give and receive support through the reciprocal relationship.

“The group I was going to, sometimes it wouldn't necessarily be that I felt I'd got a lot kind of back in terms of my own situation, but just being able to support someone else felt like a really positive thing to do.”

“going to a group where there is that understanding that it is completely anonymous and people don't know you in your day to day life, and there's no kind of expectations on you. That can be a really powerful thing and being able to support others is a really positive thing as well.”

Other benefits included the lack of a hierarchy and that peers would just sit with someone and not want to fix them. They also mentioned that conversations could be complicated with friends and family who understandably had their own emotions about any situation.

However, some interviewees did not know what peer support was, or were concerned that they might pick up negative feelings or coping skills from others. Some also confused it with group therapy.

4.2.3 Barriers to attending groups


Even if participants did find peer support useful, it could still be challenging to physically attend a support group. For some, this was compounded by issues of a lack of public transport in rural areas.

“actually trying to get out of the house was sort of the biggest challenge. I think it was kind of in terms of energy levels and just actually motivating myself to go”

Others described the issues of trust and the feeling that they were judged would prevent them from attending a group. Some described a fear of being ‘shut in’ and tried to stand near doors so that physically they wouldn’t feel trapped. They described having to rush off from events, in a way that friends understood, but that would be difficult with others.

Groups could be unpredictable, raising people’s anxiety levels. They described not knowing how many people would be attending, and what they would be discussing. Ice breakers were mentioned as a source of fear.

“motivation, energy levels and also I suppose not quite knowing what to expect when I got there was something that was a bit daunting when I was anxious and tired”

“I think the kind of unpredictability of what a session might be like was another factor in making me feel well I am not sure I can actually deal with the session whilst I am there as well”

One group was co-facilitated by a series of volunteer facilitators with some having more skills than others in managing group discussions.

“It would depend on who the facilitator was and how effective they could be in terms of managing the group situation as to kind of how useful I found it and also how likely it was that I'd actually feel anxious once I got there”

4.2.4 Creating good peer support groups

Good group facilitation was seen as essential to creating a useful peer support group. Responsibilities for managing group dynamics and ensuring everyone could speak, could be a pressure on facilitators and potentially lead to increased anxiety for them and for group members. Consequently people were not keen to volunteer to run a group.

Smaller groups were suggested, as well as groups with a specific structure, so that people could anticipate the format of the meeting. Free flowing discussions and opportunities for people to air their own problems were seen as difficult to facilitate and risk some people not getting a chance to speak. Another suggestion was that group members could contribute ideas anonymously in a box for discussion so that people who were seldom heard or uncomfortable speaking in the larger group could get their issues discussed. The skills of the facilitator were seen as an essential factor for success.

One useful practice was around goal setting where each group member set themselves a goal to achieve before the next meeting. The group would comment on whether the goals were realistic and support each other to achieve them. They found that contributing to each other was helpful.

Some of the groups were not specific to anxiety: one was a general mental health group and another was about ‘stress’. Some people commented that peer support for other issues, such as bereavement or specific physical health problems, might also help with their anxiety.


4.2.5 Online support

Some people gave specific examples of online support: Big White Wall, HeadSpace, Calm Clinic and Dare were all mentioned. Some of these online tools use texts to a phone, although a number of participants said they would prefer to speak to someone. There were mixed views about online support:

“I don’t really understand what it’s going to achieve I just think it has that teenage feel of I am not a grown up I can’t speak to somebody face to face, I am going to write my feelings online which I don’t really feel like it solves anything. I kind of like to tackle things head on in real life, whereas online where there is … I don’t know I don’t want to talk to some stranger about how I feel or comment on a group chat or whatever it is, not really.”

With concerns about the potential for it to be negative:

“the people on there are saying things like, I am so miserable today I want to kill myself and is that going to make me feel worse, am I going to encounter a whole bunch of other people that have the same kind of anxiety as me”

“I start identifying … it’s a bit like when you Google your symptoms of illness and you think that you are going to die”

The challenge of online communication was seen as a barrier, including ability to spell and articulate what help is needed, although this might feel different across age groups. Some people who were confident with one aspect of the technology such as email, were not confident with others such as Skype. People also had a range of preferences on computers, ipads or phones to access support.

The anonymity of being online was seen as both a barrier and a facilitator to support. Being anonymous could make it easier to be open:

“in some ways its easier over the phone because you are anonymous as such aren’t you, because I tended to get upset so its easier not to do that in person”

But it could also create worries about who they were speaking to. This was a particular concern on platforms such as Facebook where privacy settings can be difficult to control.

The 24/7 access to support was seen as a clear benefit of online groups, although it was mentioned that it could then feel ‘too easy’, and that going out to a group means making a commitment.

Finding out about online peer support could still be challenging, with one person commenting that she had never thought to search for it. This raises the question of how to ensure that support reaches people at an early stage, including people who haven’t acknowledged their own difficulties, their families and friends, work colleagues and other health care staff.

4.2.6 Recommendations for promoting support

People suggested that there needed to be clarity about what a group would offer, so that anyone attending for the first time could feel safe and predict what they would be attending. People want to know what they are committing themselves to, and what would happen if, because of anxiety or other reasons, they couldn’t attend. They suggested various ways of encouraging people to attend groups including a buddying scheme, phone calls, and videos showing what a group would be like.

While GPs were seen as a key source of information other health care staff could also provide opportunities for promotion, including physical health care staff. It was felt that more people should be aware of peer support and anxiety, including family and friends and the general public, to take the pressure off people having to explain anxiety to everyone:

“I think the GPs should be informed to tell the patient that there are these peer support groups available and here's where to find them”

Advertising should also go out to people’s day to day life:

“if I seen something like a poster or anything in Asda and it mentioned peer support ... don't get me wrong I wouldn't be rushing over in front of everybody and taking the number and what not but I would be taking down that number and I would be ringing it”

However, the language to be used would be a problem:

“you'd have to have the anxiety panic there, to draw their attention to it, and trust me a sufferer would be drawn to it. And then I think, I don't think, if you say peer support I don’t think they are going to know what you are on about. I don't know if support group, I wouldn't even put peer in there”

“I said to her about peer support groups and so forth. What do you mean? She said, peer support, she didn't understand that word peer.”


Summary

Our survey found that people with anxiety experience difficulty in accessing services and support groups delivered using traditional face-to-face approaches. Moreover, people with severe anxiety experience were less likely to be able attend therapy, peer support groups or peer support training due to their anxiety than those people with moderate anxiety. Over half the sample reported that current services were not appropriate, and nearly three quarters of the sample felt that online services would be more accessible.

When asked about the barriers to accessing current services, the most frequently reported barriers in the survey were feelings of anxiety and waiting times. For those with severe anxiety, travel and the distance to services and the negative attitudes of others were also frequently reported as barriers. For those with moderate anxiety, a conflict with work commitments was also cited as a barrier by nearly half of respondents.

Interviewees further expanded on the barriers to accessing services and peer support groups. The challenges of physically attending and some of the sources of anxiety that prevent attendance were described e.g. feeling physically trapped in a group session, the unpredictability of the discussion, not knowing who else would be there, anxiety over contributing to the group discussion. Factors which help to overcome these barriers included smaller groups, with good facilitation and with a specific format.

Online support generated mixed responses from interviewees. With some concerns over accessibility due to literacy and technology skills, and also relating to un-moderated sites and fears that your symptoms might escalate through reading other people’s stories. However, the ease of access and the anonymity provided were seen as beneficial.

In conclusion, there is a need for more accessible forms of support for people with anxiety. These should to take into account some of the specific needs of people with anxiety, to create a safe and secure space for people with anxiety to provide and receive peer support. Whilst online support overcomes some of the barriers to face-to-face peer support, this needs to be well-moderated and easy to use.

Recommendations for the next steps to build on this initial exploratory study are:


  • a survey of AUK membership for their views on the results of this study

  • further interviews to increase the number of responses, and also to include a more diverse group of people, particularly to be inclusive of the views of men who experience anxiety

  • discussions of the report with commissioners, specifically to emphasise the need for services which can act promptly, and also a range of services to provide a complete pathway of options for people.

References

Beck, A. T., Epstein, N., Brown, G., Steer, R. A. (1988). An inventory for measuring clinical anxiety: Psychometric properties. Journal of Consulting and Clinical Psychology, 56, 893-897.


Berger, T., Boettcher, J., & Caspar, F. (2014). Internet-based guided self-help for several anxiety disorders: A randomized controlled trial comparing a tailored with a standardized disorder-specific approach. Psychotherapy, 51(2), 207–219. https://doi.org/10.1037/a0032527
Bradstreet, S. (2006). Harnessing the ‘lived experience’: Formalising peer support approaches to promote recovery. Mental Health Review, 11(2), 33–37.
Carlbring, P., Westling, B. E., Ljungstrand, P., Ekselius, L., & Andersson, G. (2001). Treatment of Panic Disorder Via the Internet: A Randomized Trial of a Self-Help Program. Behavior Therapy, 32, 751–764.
Chambless DL, Caputo GC, Jasin SE, Gracely EJ, & Williams C.. (1985).The Mobility Inventory for Agoraphobia. Behavior Research and Therapy 23:35-44.

Davidson, J., Potts, N., Richichi, E.; Ford, S., Krishnan, K., Smith, R., & Wilson, W.. (1991). The Brief Social Phobia Scale. The Journal of Clinical Psychiatry, Vol 52(Suppl), Nov 1991, 48-51.

Davidson, L., Bellamy, C., Guy, K., & Miller, R. (2012). Peer support among persons with severe mental illnesses: a review of evidence and experience. World Psychiatry, 11(2), 123–128.
Drabowicz, T. (2014). Gender and digital usage inequality among adolescents: A comparative study of 39 countries. Computers & Education, 74, 98–111. https://doi.org/10.1016/j.compedu.2014.01.016
Eysenbach, G., Powell, J., Englesakis, M., Rizo, C., & Stern, A. (2004). Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. Bmj, 328(7449), 1166.
Farrer, L., Gulliver, A., Chan, J. K., Bennett, K., & Griffiths, K. M. (2015). A Virtual Mental Health Clinic for University Students: A Qualitative Study of End-User Service Needs and Priorities. JMIR Mental Health, 2(1), e2. https://doi.org/10.2196/mental.3890
Griffiths, K. M., Farrer, L., & Christensen, H. (2010). The efficacy of internet interventions for depression and anxiety disorders: a review of randomised controlled trials. Medical Journal of Australia, 192(11), S4.
Ipser, J. C., Wilson, D., Akindipe, T., Sager, C., & Stein. (n.d.). Pharmacotherapy for anxiety and comorbid alcohol use disorders. Cochrane Database of Systematic Reviews 2015, 1. https://doi.org/10.1002/14651858.CD007505.pub2.

Kaplan, K., Salzer, M. S., Solomon, P., Brusilovskiy, E., & Cousounis, P. (2011). Internet peer support for individuals with psychiatric disabilities: A randomized controlled trial. Social Science & Medicine, 72(1), 54–62. https://doi.org/10.1016/j.socscimed.2010.09.037

Kummervold, P. E., Gammon, D., Bergvik, S., Johnsen, J.-A. K., Hasvold, T., & Rosenvinge, J. H. (2002). Social support in a wired world: use of online mental health forums in Norway. Nordic Journal of Psychiatry, 56(1), 59–65.
Lawlor, A., & Kirakowski, J. (2014). Online support groups for mental health: A space for challenging self-stigma or a means of social avoidance? Computers in Human Behavior, 32, 152–161. https://doi.org/10.1016/j.chb.2013.11.015
Lloyd-Evans, B., Mayo-Wilson, E., Harrison, B., Istead, H., Brown, E., Pilling, S., … Kendall, T. (2014). A systematic review and meta-analysis of randomised controlled trials of peer support for people with severe mental illness. BMC Psychiatry, 14(1), 39. https://doi.org/10.1186/1471-244X-14-39
Magsamen-Conrad, K., Billotte-Verhoff, C., & Greene, K. (2014). Technology addiction’s contribution to mental wellbeing: The positive effect of online social capital. Computers in Human Behavior, 40, 23–30. https://doi.org/10.1016/j.chb.2014.07.014
McColl, L. D., Rideout, P. E., Parmar, T. N., & Abba-Aji, A. (2014). Peer support intervention through mobile application: An integrative literature review and future directions. Canadian Psychology/Psychologie Canadienne, 55(4), 250–257. https://doi.org/10.1037/a0038095

Melling, B., & Houguet-Pincham, T. (2011). Online peer support for individuals with depression: A summary of current research and future considerations. Psychiatric Rehabilitation Journal, 34(3), 252–254. https://doi.org/10.2975/34.3.2011.252.254

Naslund, J. A., Aschbrenner, K. A., Marsch, L. A., & Bartels, S. J. (2016). The future of mental health care: peer-to-peer support and social media. Epidemiology and Psychiatric Sciences, 25(2), 113–122. https://doi.org/10.1017/S2045796015001067
National Voices. (2015). Peer support: What it is and does it work?
Olthuis, J. V., Watt, M. C., Bailey, K., Hayden, J. A., & Stewart, S. H. (2016). Therapist-supported Internet cognitive behavioural therapy for anxiety disorders in adults. Cochrane Database of Systematic Reviews, (3). https://doi.org/10.1002/14651858.CD011565.pub2
Pompoli, A., Furukawa, T. A., Imai, H., Tajika, A., Efthimiou, O., & Salanti, G. (2016). Psychological therapies for panic disorder with or without agoraphobia in adults: a network meta-analysis. Cochrane Database of Systematic Reviews, (4). https://doi.org/10.1002/14651858.CD011004.pub2
Repper, J. (2013, June). Peer Support Workers: Theory and Practice. Centre for Mental Health & Mental Health Network, NHS Confederation.
Repper, J., & Carter, T. (2011). A review of the literature on peer support in mental health services. Journal of Mental Health, 20(4), 392–411. https://doi.org/10.3109/09638237.2011.583947
Roberts, N. P., Roberts, P. A., Jones, N., & Bisson, J. I. (2016). Psychological therapies for post-traumatic stress disorder and comorbid substance use disorder. Cochrane Database of Systematic Reviews, (4). https://doi.org/10.1002/14651858.CD010204.pub2

Salzer, M. S., & Shear, S. L. (2002). Identifying consumer-provider benefits in evaluations of consumer-delivered services. Psychiatric Rehabilitation Journal, 25(3), 281–288.

SCIE. (2013). Co-production in social care: what it is and how to do it (No. SCIE Guide 51). London: Social Care Institute for Excellence.
Segee, P. F., Maguire, L., Ross, J., Malik, M. L., Colket, J., & Davidson, J. R. (1999). Demographics, treatment seeking, and diagnoses of anxiety support group participants. Journal of Anxiety Disorders, 13(3), 315–334.
Simpson, A., Quigley, J., Henry, S. J., & Hall, C. (2013). Evaluating the Selection, Training, and Support of Peer Support Workers in the United Kingdom. Journal of Psychosocial Nursing and Mental Health Services, 1–9.
Thomas, N., McLeod, B., Jones, N., & Abbott, J.-A. (2015). Developing Internet interventions to target the individual impact of stigma in health conditions. Internet Interventions, 2(3), 351–358. https://doi.org/10.1016/j.invent.2015.01.003
Ziebland, S. U. E., & Wyke, S. (2012). Health and illness in a connected world: how might sharing experiences on the internet affect people’s health? Milbank Quarterly, 90(2), 219–249.

Appendix 1: Online Survey Questions


Section one: Demographics

Age


Gender

Ethnicity

Region (East Midlands, North East etc.)

Section two: Experience of anxiety



  1. Have you ever been given an anxiety-related diagnosis by a medical practitioner such as a GP or psychiatrist? [yes/no]

  2. How severe is your experience of anxiety? [mild, moderate, severe]

  3. How would you describe your experience of anxiety? [open]

Section three: Mental health service experience

In the past have you ever:


  1. Received group-based therapy for anxiety? [yes/no]

  2. Been unable to attend face-to-face or group-based therapy due to feelings of anxiety? [yes/no]

  3. Been unable to complete a course of group-based therapy due to feelings of anxiety? [yes/no]

  4. Attended face-to-face peer support groups for anxiety? [yes/no]

  5. Been unable to attend face-to-face peer support groups due to feelings of anxiety? [yes/no]

  6. Used internet-based support services for anxiety (e.g. online CBT, MoodGym, FearFighter)? [yes/no]

  7. Used internet-based support groups (e.g. Big White Wall)? [yes/no]

Section four: Peer support training

  1. Have you ever undergone peer support training? [yes/no]

  2. Have feelings of anxiety prevented you from attending peer support training in the past or might they do so if you consider future training? [yes/no]

  3. If you answered yes to Q10, do you feel that an online-based peer support training course would be more accessible? [yes/no/not applicable]

  4. Are there any other training courses that have helped you manage your feelings of anxiety? [open ended]

Section five: Improving services

  1. What are the main barriers you’ve experienced in accessing services for anxiety? You can select more than one answer. [lack of information; stigma/negative attitudes of others; feelings of anxiety; waiting times; travel/distance; conflict with work commitments; conflict with family commitments]

  2. Any there any other barriers you have experienced? [open ended]

  3. In general, do you believe that you would be better able to use services if they were delivered online? [yes/no]
  4. Are there any other ways in which services for anxiety could be made more accessible? [open ended]


  5. Do you feel the support currently available is appropriate for your circumstances? [yes/no]

  6. Are there any other ways in which Peer Support training programmes for people with anxiety could be made more accessible? [open ended]

Appendix 2: Interview Topic Guide




  • What are their experiences of anxiety and how have these impacted on them attending groups and courses?

  • What are their perceptions of the impact on those using peer support –how has it helped them? When is it most effective?

  • What other ways could we support inclusion of people with anxiety?

  • Are there any specific needs that differ across the range of anxiety issues?

  • Is online peer support particularly relevant?

  • Is attending a self-helpgroup/training course an essential part of the recovery process?

  • What are the facilitators / barriers to training?





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