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

Groves, Jeremy; Cahill, Julie; Sturmey, Gordon; Peskett, Mo; Wade, Dorothy; ICUsteps,

doi:10.1177/1751143720952017

Cited by 6 publications

(5 citation statements)

References 7 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…These findings were made possible due to the combination of observations and interviews, and suggest that both methods are relevant and beneficial when used in combination when conducting evaluation studies. Similar to our findings, Groves et al 30 found that patients benefitted from receiving empathy, understanding and support from others who had been through the same experiences. Peer support aimed at relatives both during and after admission showed that relatives found it valuable to hear others' stories and tell their own.…”

Section: Discussionsupporting

confidence: 91%

“…A survey from the United Kingdom reported that the majority of meetings were either held in hospitals or community centres, but it did not discuss what impact the location had on the participants. 30 Nevertheless, having set up a peer support programme, Peskett and Gibbs 16 found that hospital sessions were deemed inappropriate because it could be stressful for the participants to return. In our study, we do not know if more participants would have taken part if the café meetings had been held in another location, but it is clear that those participating found the hospital to be a suitable location.…”

Section: Discussionmentioning

confidence: 99%

“…According to our findings, the content, setting and timing of the café meetings were of minor concern for the participants, although they preferred such meetings to be held in a hospital. A survey from the United Kingdom reported that the majority of meetings were either held in hospitals or community centres, but it did not discuss what impact the location had on the participants 30 . Nevertheless, having set up a peer support programme, Peskett and Gibbs 16 found that hospital sessions were deemed inappropriate because it could be stressful for the participants to return.…”

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

Peer support in intensive care unit follow‐up: A qualitative evaluation

Glæemose,

Hanifa,

Haslund‐Thomsen

2024

Nursing in Critical Care

View full text Add to dashboard Cite

BackgroundPatients formerly admitted to an intensive care unit and their relatives seek information about life after critical illness to understand their symptoms and what to expect as survivors, and they express a desire to talk to others with similar experiences. Various operational models of post‐intensive care peer support exist, and studies have reported potential beneficial mechanisms in patients involved in peer support programs. However, most models have not been formally evaluated.AimTo evaluate the content and setting of structured group meetings and explore participants' experiences of meeting peers.Study DesignA qualitative evaluation combining focused ethnographic observations and semi‐structured interviews with 22 participants attending three intensive care unit café meetings in a university hospital. A thematic analysis was conducted using all data collected.FindingsThree main themes emerged; ‘Accommodating the diversity of patients and relatives’, ‘A range of possibilities for identification’ and ‘A newfound community’. Findings indicate that the content, setting and timing of the café meetings were of minor concern for the participants. Patients and relatives should attend together because the consequences of surviving a critical illness affect both. Larger groups of participants appeared to increase the likelihood of encountering broad variances in participants' experiences from the critical illness trajectory. The findings indicate that before attending a meeting, the participants did not find previous experiences sufficient in managing their new life situations and they felt alone in their experiences.ConclusionPeer support invited participants into a secure community and eased their sense of being alone in their struggles. Meeting peers seemed to be more important than following a specific model of peer support.Relevance to Clinical PracticeWhen setting up peer support for former intensive care patients, the most important aspect is to create a secure space for patients and their relatives to meet.

show abstract

Section: Discussionsupporting

confidence: 91%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Peer support in intensive care unit follow‐up: A qualitative evaluation

Glæemose,

Hanifa,

Haslund‐Thomsen

2024

Nursing in Critical Care

View full text Add to dashboard Cite

show abstract

“…3 Peer-support programmes reduce psychological morbidity and increase levels of social support for ICU survivors 4 ; therefore, can be effective low-cost interventions. 5 However, post-ICU peer groups are not universally available, 6 fall into a range of models, 7 and the evidence base is limited. 4 Experts by experience providing peer support is well established in a variety of settings.…”

Section: Introductionmentioning

confidence: 99%

An Intensive Care Unit peer support group: Participants’ views on format, content and the impact on recovery journeys

Clarke

Chow

Kerrison

2022

Journal of the Intensive Care Society

View full text Add to dashboard Cite

Background Peer support groups reduce psychological morbidity and increase social support for Intensive Care Unit (ICU) survivors. Group formats differ and research, although emerging, is limited. This study explores a continuously running ICU Expert by Experience group, which has a dual role of support and service-user consultative, from attendees’ perspectives. Methods A thematic analysis was conducted on interviews with current and past members of an ICU Expert by Experience group. 11 participants took part in online and telephone interviews. Three provided written responses. Final themes were created following a process of data validation with participants. Results Four main themes emerged: (1) Support in the difficult recovery journey (2) Relationships and shared experiences (3) Value of professional facilitation (4) Practical considerations. Conclusion Patients highlighted the help gained from the group as an integral part of their recovery journey. Results also identified practical implications for those considering setting up similar support groups.

show abstract

“…Charities need to ful l charitable purposes for public bene t, including health. Alternatives to setting up a charity include a social enterprise which is a business with social, charitable or communitybased objectives where rules on 'charitable purposes' do not apply (7,8). In Malaysia, PSGs may be societies registered under the Registrar of Societies (Jabatan Pendaftaran Pertubuhan Malaysia (JPPM), using a non-governmental organisation (NGO) model but other models such as business models may be used (9).…”

Section: Introductionmentioning

confidence: 99%

Identification of Patient Support Groups in Malaysia: An Exploratory Study

Saw

Tan

2022

Preprint

View full text Add to dashboard Cite

BackgroundPatient support groups (PSGs) are generally defined as a group of people with common experiences and concerns, and they provide emotional and moral support for one another. Despite their widely reported benefits, there are no studies conducted on the regulation of PSGs in Malaysia and their quality of support. We conducted this exploratory research to identify, map and describe PSGs in Malaysia aimed at identifying PSGs that might be interested in receiving training in understanding and using high-level research evidence such as Cochrane evidence. The ultimate goal is to empower patients to make evidence-based healthcare decisions.MethodsWe performed an online search and contacted practising physicians from various specialties for suggestions of known PSGs. We examined the websites of all identified PSGs and extracted data describing their organisation, purpose and function. Results A total of 44 PSGs meeting our criteria were included. Most of the PSGs identified catered to disease groups, mainly NGOs and informal Facebook groups. Most of them provided support to the patient and their family or caretakers in very similar ways, with some minor variations. About one-third had a stated mission and vision or objectives. None of the PSGs provided a description of their funding policy or provided any statement of awareness of conflict of interest (COI). Where information on funding sources was included it was not clear whether there could be a COI in it. Although the websites did not include advertising, one included a logo of a major pharma company. Only 4 included in any website scientific references to support the information included in the websiteConclusionsPSGs operating in Malaysia have a clear mission statement, vision and objectives on their website describing their intention and role in supporting patients in a holistic manner. They practise a partnership model with their users. Aspects that could be addressed include PSGs’ stance on COI and transparency in sources of funding. There may be a need to engage with PSGs to help them seek feedback from users and to help them understand and use reliable research in their education of their target patient groups.

show abstract

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

Cited by 6 publications

References 7 publications

Peer support in intensive care unit follow‐up: A qualitative evaluation

Peer support in intensive care unit follow‐up: A qualitative evaluation

An Intensive Care Unit peer support group: Participants’ views on format, content and the impact on recovery journeys

Identification of Patient Support Groups in Malaysia: An Exploratory Study

Contact Info

Product

Resources

About