Experience and perceptions of Social Prescribing interventions; a qualitative study with people with long-term conditions, link workers and health care providers

TL;DR

This study explores how Social Prescribing interventions are experienced and perceived by patients with long-term conditions, link workers, and healthcare providers.

Contribution

The study provides new insights into stakeholder perspectives on Social Prescribing for managing long-term conditions.

Findings

Participants identified key factors for successful Social Prescribing implementation.

Diverse stakeholder views highlight the importance of patient-centered care in Social Prescribing.

Findings will inform the development of a pilot Social Prescribing service.

Abstract

Background

Long-term conditions (LTC) are a leading cause of reduced quality of life and early mortality. People with LTC are living longer with increasing economic and social needs. Novel patient centred care pathways are required to support traditional medical management of these patients. Social Prescribing (SP) has gained popularity as a non-medical approach to support patients with LTC and their unmet health needs. The current focus group study aims to explore the experiences and perceptions to SP interventions from the perspective of people with long-term conditions, link workers, healthcare providers and community-based services.

Methods

Six-eight participants will be recruited into three specific 60-minute focus groups relative to their role as a patient, link worker and community-based service. Eight-12 participants with a Health care provider and GP background will be interviewed individually online. The participants within these focus groups and semi-structured interviews will be invited to provide opinions on what factors they think are important to the successful implementation of a SP service from their respective stakeholder positions. The data will be recorded and exported to NVivo software for further analysis using Thematic Reflexive analysis methods. Coded categorical data will inform emerging themes from which a narrative summary will be consolidated and presented for dissemination.

Conclusion

The conclusions made from this study will help inform the next study, which will aim to develop a pilot SP service for patients with LTC, as part of an overall larger project.

Full text

Introduction

Background and rationale

Long-term conditions (LTC) are typically characterised as non-self-limiting, persistent specific illness or multiple illnesses co-existing simultaneously ^ 1, 2 ^ which cause reduced quality of life and physical capacity and increases with age ^ 3 ^. Population growth, decreased socioeconomic circumstances and increasing age of individuals living with LTC place an extensive burden on society ^ 4 ^. Management of LTCs are challenging. Biomedical approaches targeting the underlying pathophysiology of the disease ^ 5 ^ have failed to address how an individual experiences ill-health ^ 6 ^. It is becoming evident that inadequacies in health provision to those in the middle to low socioeconomic groups requires evidence-based and cost-effective methods of managing patients with multifaceted LTC ^ 7– 9 ^. Self-management approaches ^ 10 ^ including positive lifestyle changes and improving health literacy ^ 11– 13 ^ may reduce economic burden by empowering individuals to cope with their condition.

Social Prescribing (SP) is a self-management approach involving the utilisation of services already embedded in the community, and may act as short and long-term support for patients with health and wellbeing issues ^ 14 ^. SP emerged over a decade ago ^ 15 ^ and is growing across many countries to support those lower socioeconomic communities who have increased prevalence of long-term health and wellbeing conditions ^ 16 ^. SP involves the use of a lay person “link worker” or “community health worker” who facilitates the acquisition of tertiary non-clinical services after receiving a referral from a General Practitioner (GP) or other health care providers (HCP) ^ 17, 18 ^. SP models may be categorised as ‘broad’, involving light touch signposting to financial, employment or housing support services ^ 19 ^; referral to community groups (art/exercise therapy) ^ 14 ^ or more ‘specific’ where support is more intensive to address unmet physical and mental health needs ^ 16, 20 ^. The evidence base around the use of SP models is emerging but of mixed results ^ 14, 21, 22 ^. Reviews have highlighted the lack of robust methodological evaluation ^ 22, 23 ^, inappropriate use of comparative outcome measures, high attrition rate and lack of appropriate controls ^ 14, 24 ^ as barriers to proper scientific evaluation. With so many different SP models each reflecting the community’s needs, it is difficult to establish what factors influence its successful implementation from the perspective and experiences of all the relevant stakeholders. This lack of knowledge and understanding has prompted the need for this qualitative research.

** Aims and objectives. ** The aim of this qualitative study is to explore the experience and perceptions of SP interventions in people with LTCs and those link workers, health care professionals and community-based services who are engaged in SP interventions.

Study design

Design

This study will utilise qualitative methodology ^ 25 ^ including three semi-structured focus groups and one group of one to one interviews to collect information from stakeholders directly involved in SP interventions; person, link worker, HCP, GPs and community based services ^ 26 ^. A qualitative descriptive design ^ 27 ^ will be used to analyse information gathered from those stakeholders involved in SP interventions. This design will enable participants to voice their opinions and permit researchers to explore the phenomenon of interest to provide knowledge and understanding ^ 28 ^. Three focus groups (n=6–8) will be conducted with people with long-term conditions, link workers, and community-based services. Eight to twelve one to one online semi-structured interviews will be conducted with HCP’s and GPs. Focus groups and interviews will be continued until sufficient information power has been reached ^ 29 ^.

The focus groups and online interviews will be facilitated by Declan O’Sullivan (DOS) (principal researcher). A predefined interview guide will be developed and piloted with people with LTC and HCP ^ 30 ^. The questioning schedule will be utilised to guide the focus group discussion. The focus group discussions will be held in person or online via Microsoft Teams. The health care providers and GP’s will be interviewed one to one in person or online via Microsoft Teams. Each focus group discussion will be 60 to 90 minutes long. Each interview will last 35–45 minutes.

Participants

Sample

Thirty participants will be recruited for three focus group discussions and one to one semi-structured interviews in order to reach information power.

Inclusion criteria

The participants recruited for this study will be:

1. People with LTCs who are currently or have in the past engaged with SP interventions (within the last six months). Participants will be over the age of 18years and be able to communicate in English (n=6–8)

2. Link workers embedded within a community who facilitate the implementation of a SP service on behalf of a voluntary or governmental agency (n=6–8)

3. Healthcare practitioners (Physiotherapists, Occupational therapists, Speech and language therapists, Social workers and GPs) who currently refer or previously referred patients directly to the link worker within a SP service (n=8–10)

4. Existing or past community-based service providers of SP interventions (n=6–8).

Exclusion criteria

1. Individuals who do not have a LTC or are under the age of 18. Those with existing psychiatric illness or insufficient English to enable informed consent to the study or where participation in the study may be detrimental to their health.

Ethical and regulatory considerations

Patient information sheets (Extended Data) will be provided and written informed consent (Appendix 5) will be acquired prior to and digitally recorded on the date of the focus group discussion. Participant confidentiality will be prioritised throughout the duration of this study. All participants’ data will be systematically anonymised digitally and only accessible by the principal researcher (DOS) and 1 ^st^ research supervisor (JMcV). The participants may withdraw from the study at any stage prior to and after the focus group discussion and their data will not be used in this study and deleted fully. This study will be submitted for ethical approval from University College Cork, Clinical Research Ethics Committee (CREC).

Recruitment

Participants (n=30) will be recruited voluntarily to take part in three focus groups and semi-structured interviews across the Health Service Executive, South-Southwest hospital group regions. We aim to have 6–8 participants per focus group and eight-12 semi-structured interviews.

Purposive sampling will be used to recruit participants for each focus group and interview group:

Group one: Adults with long-term conditions (n=6–8) from diverse socioeconomic backgrounds

Group two: Healthcare providers including physiotherapist, occupational therapists, speech and language therapists, GPs, and social workers (n=8–12)

Group three: A ‘Gate Keeper’ will be used to recruit link workers (n=6–8) for a focus group.

Group four: Facilitators working in community-based services (n=6–8)

To recruit participants for group one, group three and group four focus groups, a formal introductory email (Extended data) will be forwarded to the manager (Gate Keeper) of SP interventions in the South-South West Hospital Group (SSWHG) in Munster. This email will inform them of the details of the study, how many participants are required, and a request to share information about participation with their staff (link workers), patients and community-based SP services as appropriate ( e.g. via word of mouth, telephone or email). Participants for this group will also be recruited through flyers, social media posts and posters made by the research team and placed in community resource centres, General Practitioner (GP) practices and community-based services already providing SP interventions.

Participants for group two focus group will be recruited with a formal introductory email (Extended data) to the managers (Gate Keepers) of local physiotherapy, occupational therapy, speech and language therapy and social worker departments outlining details of the study, how many participants are required, and a request to share information about participation with their staff. GP’s will be recruited through a formal introductory email (Extended data) to local clinics outlining why GPs are being recruited, details of the study, the duration of the interview and how the interview will be conducted.

Groups two and four may also be recruited indirectly through flyers, social media posts and posters containing the contact details of the principal researcher (DOS).

Interested participants can contact the principal researcher (DOS) who will arrange a time to contact them by telephone. At that initial contact, DOS will explain the study, answer any questions, and screen the participant against the inclusion and exclusion criteria. DOS will provide potential participants a plain language participant information leaflet Extended data) with relevant information about the study and a consent form (Extended data).

Focus group procedure

All participants will be provided with a written information sheet and written consent form prior to commencement of the focus group discussion. The participants will be forwarded a M-Teams ^ 31 ^ meeting link by email for the date and time of the focus group one month prior to the focus group discussion by email and an email reminder one week prior to it. An interview schedule will be formulated by principle researcher (DOS), reviewed by JMcV and piloted prior to the focus group discussion. The facilitator (DOS) will provide at the beginning of each focus group a brief summary/reminder of the purpose of the study and focus group, and outline focus group etiquette and conduct rules. The facilitator will then ask participants to introduce themselves very briefly. There will be eight to 14 open ended questions designed to encourage engagement based around sub-themes of; attitudes and expectations; experience of SP; impact of SP; recommendations and finally exit questions to determine if there were any outstanding or new themes that had not been explored. Participants will be reimbursed for any financial cost associated with travel to and from the focus group if they are held in person. If the focus groups are held in person, a suitable venue will be identified with appropriate wheelchair access. The discussion will be preceded by a quick synopsis of the aims and objectives of the study and moderated by DOS in its entirety and guided by the interview guide. A non-participant mediator (JMcV) will track the questions and ensure all topics are followed up.

Interview procedure

All participants will be provided with a written information sheet and written consent form prior to commencement of the interviews. The participants will be forwarded a M-Teams meeting link by email for the date and time of the interview one month prior to the interview and an email reminder one week prior to it. An interview schedule will be formulated by DOS, reviewed by JMcV and piloted prior to the interview data collection. The interview will be recorded once consent has been achieved.

Data collection and analysis

Qualitative data will be collected via the focus groups and interviews. Audio-recording will begin once all participants are present and seated to facilitate transcription. A semi-structured focus group schedule will be used to guide discussion and will include questions and associated prompts and probes. Field notes will be taken. Focus groups will be audio recorded using an Olympus Digital Voice Recorder WS-853 or equivalent. Audio-recordings will be immediately transferred to the secure OneDrive folder and deleted from the recording device. The audio files will be transcribed anonymously by the principle researcher (DOS) with all identifiers removed and replaced with an ID number through an on-line proprietary software transcribing software (Otter.ai) ^ 32 ^ or open access otranscribe ^ 33 ^. If the focus groups or one to one interviews are conducted on line with Microsoft Teams ^ 31 ^, an automated transcribing application embedded within this software will perform the transcription. The data will be exported to a proprietary software NVivo ^ 34 ^ or open access Aquad ^ 35 ^ which is username and password protected software used for the analysis of unstructured text as found in a group discussion ^ 34, 36 ^. The NVivo software will be stored on the principal researcher’s (DOS) laptop, which is, also pin code protected. A further encrypted pin will be required to access the data file when using the NVivo software.

A qualitative descriptive design will be utilised for the analysis of the data ^ 28 ^. The data will be scrutinised qualitatively using Reflexive Thematic analysis framework ^ 37, 38 ^ to ensure transparency and reduce bias ^ 39 ^. Using an inductive approach, the following six-step methodology will be employed; data familiarisation; data coding; generation of initial themes; developing and reviewing of themes; redefining, defining and naming of themes and finally write up ^ 38 ^ to enable ‘illustrative quotations’ ^ 40 ^ to consolidate narrative conclusions ^ 41 ^. After ‘member checking’ ^ 42 ^ the final phase of the thematic analysis will involve interpretation and reporting of findings.

Data management

Recorded audio files will be saved only until transcription is complete, at which time they will be deleted by the principal researcher DOS. Transcripts will be stored in a secure folder on the project OneDrive. We will store any paper consent forms until such time as they can be scanned and stored electronically, expecting that many consent forms will be scanned and returned by email by the participants. Paper consent forms will then be shredded. We will store participant’s consent information (Extended data) on a secure Excel file on the project OneDrive folder.

The electronic data will be stored on an encrypted file on the UCC SharePoint in line with the University’s Code of Research Conduct Version 2.3.2019. The qualitative data will be stored in a .sav file on the UCC secure server (OneDrive) on the personal work computers of the principal researcher (Declan O’ Sullivan) and PhD supervisor Dr J. McVeigh. We do not anticipate storing any physical data, as consent forms will be shredded and saved electronically.

The electronic data will be stored in line with the Universities Code of Research conduct, for at least 15 years after the publication of any reports or papers arising from the study, after which time the principal researcher DOS will destroy the data.

This electronic dataset will remain within the School of Clinical Therapies and will not be made publicly available for open data sharing purposes. Participants in the focus groups will not be asked for their consent to share their data publicly. The analysed anonymous data will likely be presented as project output in dissemination such as conferences, journal submissions, and will be included in the final report. Declan O Sullivan: the principal researcher will be responsible for storing and protecting the data collected. Access to this data will be restricted to the research team. Generated data associated with this research will be stored for a minimum of ten years according to university regulations and the data will not be reused. A PDF of the final version of this study will be forwarded to the participants of the focus group by email or post and will simultaneously be submitted to an Open Access journal for publication and dissemination.

Definition of end of study

The focus group will terminate when all participants have departed from the focus group venue. This study will end when the final version of the study has been approved by the research team and it has been submitted to an appropriate journal for publishing.

Quality assurance procedures

The quality of this study will be underpinned by ensuring there is clarity of purpose; recruiting appropriate participants; skilful moderator with effective questions; detailed and systematic analysis of the data ^ 43 ^.

Protocol study status

This study is awaiting ethics approval

Expenses and benefits

Participants of the focus group discussion will be remunerated for the cost of travel to and from the venue hosting the focus group discussion.

Insurance

All research involving patients/volunteers must be approved by UCC Sponsor's Office before study commencement date. When this approval is granted all participants of this study will be indemnified in accordance with the terms and conditions of the UCC policy.