Patient support groups: A survey of United Kingdom practice,purpose and performance

Abstract

Background

Critical care survivors face physical, psychological and socio-economic burdens. Peer support is acknowledged as a way individuals can face, accept and overcome the challenges arising from a stressful event. We sought to examine the provision and benefits of peer support to critical care survivors in the UK.

Method

We distributed a survey, devised by the patients and relatives committee of the Intensive Care Society and ICUsteps, to contacts in 163 UK Trusts/hospitals with critical care departments. The benefit to individuals was assessed by seeking the views of attendees of two support groups.

Results

A response was received from 91 (56%) of the critical care departments. Of these, 46 (48% of respondents) have patient support groups. Our analysis of comments from 30 people is that support groups greatly benefit service users and staff.

Conclusions

Attendees of patient support groups gave highly positive comments about the service yet provision of patient support groups in the UK is not universal.

Recommendations

We make a series of recommendations for consideration by UK health care providers.

Introduction

It is known that survival after critical care poses significant physical, psychological, economic and social burdens on patients and their families. ¹ Many have continuing problems with pulmonary, neuromuscular and physical function and suffer from anxiety, depression and post-traumatic stress symptoms for months or years after critical care admission.^2–5 Patients may be unable to return to work, find it difficult to communicate with their families and feel socially isolated.

Peer support groups allow people with shared experiences to give and receive support to each other. Peers help each other learn about how best to manage feelings and experiences that are difficult. ⁶ The first critical care peer support groups in the UK were set up by the patient charity ICUsteps, who continue to run a number of groups around the country. ⁷ Other units have set up peer support groups independently of this network. Some UK critical care support groups were funded by the Thrive international collaborative under the umbrella of the US Society of Critical Care Medicine (SCCM). Peer support groups may be led by patients or facilitated by clinicians such as nurses, doctors or psychologists. They may have a mental health, educational, practical or social focus, and be held in hospitals or in the community. ⁸

Guidelines from the Intensive Care Society (ICS)⁹ and Faculty of Intensive Care Medicine (FICM) (2019) and the National Institute for Health and Care Excellence (NICE, 2009)¹⁰ both highlight the need for providers to deliver both patient support groups and critical care follow-up clinics. There is no current data on the availability or nature of critical care peer support groups in the UK. In view of this, the Patients and Relatives Committee of the Intensive Care Society (ICS), in conjunction with ICUstep, decided to survey NHS providers to assess current provision.

Methods

The Patients and Relatives Committee, with input from ICUsteps and help from the Scottish Intensive Care Society (SICS), devised and distributed a survey via Survey Monkey to nursing and allied health professional (AHP) members of the ICS. After the initial mailing we enlisted the help of ICNARC (Intensive care national audit and research centre) who distributed the link to the questionnaire to the lead nurse in each of the units in their audit program. Where replies were received from more than one individual in an organisation, only the first response was analysed.

Critical care survivors attending ICUsteps peer support groups were asked to give written feedback on the benefits or otherwise of attending the groups. Their comments have been collated by theme.

Prior to circulation, this survey was considered by both the Council of the ICS and the Board of ICUsteps.

Results

Questionnaire survey

Questionnaires were sent out to 163 health care organisations (152 Trusts in England, Wales and Northern Ireland, and 11 Scottish hospitals). We received 114 responses from 91 organisations. Of these 46 (48%) have access to critical care patient support groups, half of which are based on the ICUsteps model. Forty-eight critical care departments (52%) have formal follow-up clinics and 25 (27%) have both. For full survey result details, see Table 1.

Table 1.

Questions and responses to the UK critical care peer support survey.

Question		Response
Access (n = 91)
1.	Do your patients have access to a support group?	Yes:	46 (48%)
2.	Do you have a formal ICU follow-up clinic?	Yes:	48 (52%)
3.	Access to both follow-up clinic and support group?	Yes:	25 (27%)
Support group Administration (n = 46)
4.	Is your group an ICUsteps group or based on the ICUsteps model?	Yes:	23 (50%)
5.	How is the group funded?	By a hospital trust:	5 (11%)
		By a charity:	12 (26%)
		Not funded/not known:	29 (63%)
6.	Who provides administration services (printing, stationery, etc.)?	Members/volunteers:	9 (19.5%)
		Hospital/trust:	17 (37%)
		Charity:	8 (17.5%)
		Not answered:	12 (26%)
7.	Does the group have a management committee?	Yes:	14 (30.5%)
8.	Does the group have a formal constitution?	Yes:	11 (24%)
Location and frequency of meetings and number of attendees (N = 46)
9.	Where does the group meet?	Hospital trust:	18 (39%)
		Community centre:	15 (33%)
		Not answered:	13 (28%)
10.	What is the frequency of the meetings?	Monthly or less or open ended:	10 (22%)
		Monthly to quarterly:	15 (33%)
		Quarterly to annually:	10 (22%)
		Not answered:	11 (24%)
11.	What is the approximate number of attendees?	0–10	17 (37%)
		11–20	12 (26%)
		21–30	1 (2%)
		>30	1 (2%)
		Not answered	15 (33%)
Nature of the meetings (N = 46)
12.	What is the format of the meetings? (more than one answer possible)	Informal discussion:	27 (59%)
		Talks by patients:	8 (17.5%)
		Talks by clinicians:	8 (17.5%)
		Other	2 (4%)
13.	Who leads the group?	Patient led:	12 (26%)
		Nurse led:	18 (39%)
		Allied Health professional led:	1 (2%)
		Consultant led:	3 (6.5%)
14.	What professional support is available? (more than one answer possible)	Medical:	11 (24%)
		Nursing:	8 (17.5%)
		Physiotherapy:	4 (9%)
		Psychologist:	3 (6.5%)
		Occupational therapist:	3 (6.5%)
		Other:	15 (33%)

Only a minority of groups – 17 (37%) receive funding, the majority from charitable sources. Administrative services are provided mostly by the hospital, but sometimes by members or charitable sources. Just under a third of groups have management committees including ex-patients and/or carers. About half have a formal constitution.

There is a wide range in the frequency of meetings, with the most common frequency being between 3-and 6-monthly. Groups mostly meet in hospitals or community centres. There is also a wide range of group attendance with several groups reporting less than five attendees per meeting, and one group reporting over 30.

Groups are mostly led by nurses, although eight are patient-led. The majority of the groups (27) have an informal discussion format. Eight organise talks by medical staff and eight have patients talking at their meetings. There was professional support available at most of the groups.

Patient feedback

We analysed 48 comments from 27 patients, 3 relatives and 1 clinician from two support groups. Comments have been grouped into three broad themes (support for patients; support for family; staff benefit), with sub-themes. The results are summarised in Table 2.

Table 2.

Service user and staff comments about patient support groups.

Theme	Sub-theme	Number of comments	Illustrative quotes
Support for patients	Feeling less alone with difficult experiences	27	“It’s comforting to be around other people who have experienced the same … that certain symptoms/feelings are normal for an ICU patient: hair loss, memory loss, lack of strength, fatigue, frustration, difficulty in accepting the length of recovery time.” “It made me feel less on my own. It felt like having a comforting arm around me.” “It’s impossible to explain to friends and family how it feels, probably in the same way I can’t understand what they felt and saw.”
	Information and explanations from staff	7	“I had medical questions and the staff attending the sessions were able to explain these and help me understand why I was given certain procedures.” “I was facing an elective stay in ICU and was not sure about going through with it … by talking to staff on an equal basis I got to understand a lot more about what would happen : it made my stay easier.”
	Overcoming psychological trauma	6	“Feelings of vulnerability, waiting for the next bad thing to happen – how to put things into perspective and get back to normal – attending the meetings assisted with this.” “Intensive Care was frightening, traumatic and made me feel very much alone. The support group brings me together with people who have experienced the same, which helps me to minimise those feelings. I feel supported.”
	Socialising with others	3	“We have all shared tears and laughs and diaries and experiences (not to mention chocolate biscuits).” “It’s also a social event, so we can chat and make friends.” “We have a lovely friendly atmosphere at our meetings.”
	Satisfaction and validation from being able to help others	1	“There was a patient attending for the first time. Talking to her about her feelings, frustrations and anxieties was like listening to myself 7/8 months prior. It was nice to actually advise and know you’re doing so having experienced it first-hand….I realised how far I had come.” “I was involved with the set-up of our local group, … it gave me a focus … and a feeling of validation, as I knew that I would never be well enough to work again.”
Support for relatives	Mutual support from other relatives	2	“My wife was able to relate to others who supported husbands/wives in ICU.”
	Understanding patient’s perspective	1	“My husband…pulled through 12 days in ICU..he knew nothing of his time in ICU so to him it doesn’t matter. But to us it was awful … we just would like to understand his thinking. The support group is helping with this.”
Benefit for staff	Enables staff to value work	1	“For any staff working in ICU, a profession notorious for burnout, this is a hugely positive experience. If you’re wondering if your job is worth it, if you’re really making a difference, then visit the [support group], you won’t want to do anything else.”

The overriding views of those commenting were positive.

Discussion

Many, if not all organisations, provide informal support to critical care survivors, with post unit visits by outreach teams and an ‘open door’ after discharge. However rehabilitation programmes form an important part of the management of both the physical and psychological aftermath of critical illness, and peer support groups can be a helpful part of these programmes. Encouragingly, patients and families from 46 organisations (48% of respondents) had access to a critical care support group. Increased recognition of the psychological impact of critical care during the COVID-19 pandemic may lead to more groups being set up.

Existing groups appear to be run with minimal formal funding, though most (85%) have support from, or are led by, hospital staff, and many have use of hospital facilities and some administrative services. There was a striking heterogeneity in both the number of attendees, from less than 5 to more than 30, and also in the frequency of meetings, from monthly to annually.

Our analysis suggests that critical care support groups are valued by service users. The overwhelming benefit for patients was receiving empathy, understanding and support from others who had been through the same experience. Knowing that they were not alone helped them to come to terms with their critical care stay. Meeting staff who could answer questions demystified the critical care episode, and in some cases helped patients overcome psychological trauma. Patients also felt validated by supporting other patients and helping to run groups.

For relatives, the support group offered the chance to meet other relatives with similar traumatic experiences, as well as helping them understand what patients had been through (both patients and relatives mentioned that families and friends found it hard to understand patients’ experience of critical care). The meetings also proved positive for attending healthcare staff, giving them a rare chance to meet recovering patients.

Despite the recommendations from both NICE (2009)¹⁰ and the ICS/FICM (2019), ⁹ the provision of follow-up clinics remains low, with only half of the responders stating there was provision for their patients.

Strengths

The survey was sent out to all adult UK ICUs using the networks of three national organisations; the ICS, Scottish ICS and ICNARC. As well as quantitative data regarding provision of peer support groups, qualitative data, to describe the benefits of support groups to patients, relatives and staff, were collected in the form of comments from support group users.

Limitations

While the response rate of 56% is well above average (33%), a higher rate would be optimal. We also received multiple responses from 16 organisations that were not always internally consistent. Our decision only to use the first response may have led to errors, as may have self-reporting. In view of this, and because of the high proportion of unanswered questions, reported results, such as the frequency of meetings and number of attendees, without access to formal registers, were at best a good estimate.

Conclusions

From the data we have collected we conclude that the provision of patient support groups and critical care follow up clinics are available to around half of patients discharged from critical care units in the United Kingdom. The patients and relatives committee of the ICS and ICUsteps endorse the following standards and make the following recommendations.

Standards

All patients with identified rehabilitation needs who are discharged from critical care should have access to a rehabilitation programme which includes follow up within three months of discharge (NICE, 2009). ¹⁰

To help deal with the psychological consequences of a critical care stay patients and family members of ICU survivors should be offered the opportunity to access information in written format and peer support, as outlined in GPICS (2019) and the NICE post-traumatic stress disorder guideline (2018, section 1.4).^9,11

Recommendations

Peer support groups should be based on a sustainable model.

Health care providers should either offer facilities, staff and administrative support to peer support groups or strongly support third-sector provision.

Health care providers should consider allocating nursing, medical and AHP staff (including psychologists) to peer support groups.

Patients should be able to decide when to access peer support. Those with significant physical or psychological problems may prefer individualised care (e.g. cognitive behavioral therapy for PTSD) before they are ready to benefit from peer support groups.