CATHERINE HOMER,1 KARINA KINSELLA,2 TAMARA BROWN,2 JORDAN MARWOOD,4 KEVIN DREW,2 DUNCAN RADLEY,3 CHARLOTTE FREEMAN,4 ABIMBOLA OJO,4 JENNIFER TEKE,4 KEN CLARE,2 CHIRAG BAKHAI,5 LOUISA ELLS2
1 Sport and Physical Activity Research Centre, Sheffield Hallam University, Olympic Legacy Park, Sheffield
2 Obesity Institute, School of Health, Leeds Beckett University, City Campus, Leeds
3 Obesity Institute, School of Sport, Leeds Beckett University, Headingley Campus, Leeds
4 Re:Mission Patient and Public Involvement Group, Obesity Institute, School of Health, Leeds Beckett University, Leeds
5 Larkside Practice, Churchfield Medical Centre, Luton, Bedfordshire
Address for correspondence: Dr Catherine Homer Sport and Physical Activity Research Centre, Sheffield Hallam University, Olympic Legacy Park, 2 Old Hall Road, Sheffield, S9 3TU
E-mail: c.homer@shu.ac.uk
https://orcid.org/0000-0003-2571-6008
Background: The weight maintenance phase of the NHS Low CalorieaDiet (LCD) programme focuses on embedding long- term dietary and physical activity changes. Understanding individual experiences of this phase is crucial to exploring long- term effectiveness and equity of the intervention approach.
Methods: This was a coproduced qualitative study underpinned by a realist informed approach, using interviews and photovoice techniques. Service users (n=25) of the NHS LCD programme were recruited from three delivery models, across 21 sites in England. Data were analysed using a thematic approach.
Results: The experiences reported were largely positive, with many participants reporting changes in their diet and physical activity. Some service users expressed a need for additional support and there appeared variation in their experiences of the service providers and the wider available support network. Fear of weight regain and its glycaemic consequences was expressed by many; various mitigations were employed, including participating in other weight loss services and continuing use of Total Diet Replacement products.
Conclusions: The NHS LCD programme has been life-changing for some people. However, service user insights suggest that a stronger person-centred focus might further improve effectiveness and service user experience.
Br J Diabetes 2024;24:ONLINE AHEAD OF PUBLICATION
https://doi.org/10.15277/bjd.2024.432
Key words: type 2 diabetes, obesity, Low Calorie Diet, qualitative, longitudinal, weight maintenance, Re:Mission study
This is the third and final paper in a series examining qualitative service user experiences of the NHS Low Calorie Diet (LCD) Programme pilot.1,2 This paper focuses on experiences reported at the end of the weight maintenance (WM) phase, coinciding with the end of the 52-week programme. An overview of the LCD programme (now known as the NHS Type 2 Diabetes Path to Remission Programme) has previously been reported.3
The focus of the WM phase of the LCD programme is to support service users to embed long-term dietary and physical activity changes. This phase promotes an individualised approach whereby service users are supported to maintain their weight loss or to undertake further controlled weight loss if appropriate.
Stated aims of the programme include success in driving weight change, glycaemic improvements and diabetes remission.4 These will be assessed through quantitative evaluation by NHS England and reported elsewhere. However, understanding service user-led measures of success is important for exploring engagement, motivation and other factors which may drive the measured quantitative outcomes.5,6 The Re:Mission study was underpinned by a realist informed approach,7 to help provide research-informed theories to determine how and why outcomes may differ for different people. The ability to understand which aspects of the programme work and which do not work, for whom and why is also critical in ensuring ongoing service improvements and equity. A full summary of the methods used in the study is reported in a simultaneously published paper.3
This paper details the methodological approach taken using the COREQ guidelines,8 which are described in supplementary file 1.
Participants were recruited to interview on either expressing an interest in the participant survey or responding to an invitation sent via their service provider. Maximum variation sampling was used to gain representation from across different socio-demographic and service delivery models and providers.9 This sampling took into account the variation in number of contracts different providers held. Full recruitment methods are reported here.3 Longitudinal interviews were conducted with a sample of 25 participants (83% of the original cohort recruited and interviewed at 12 weeks, and 92% of those interviewed at 18 weeks). Participant characteristics are summarised in Table 1 and supplementary file 2. Those participants lost to follow-up from the 18-week interviews either withdrew from the study for personal reasons, did not complete the LCD programme, or did not respond to follow-up interview invitations. The experiences of service users who withdrew from the programme are reported elsewhere.10 Of the 25 participants, 12 shared audio recordings, films or images prior to the interview3 (see supplementary file 3); many of those who did not share reported lack of time before the interview. Two researchers (KD, CH) conducted the interviews, with six interviews supported by members of the Re:Mission patient and public involvement team (supplementary file 2). Interviews were conducted and recorded online (MS Teams) and lasted between 34 and 75 minutes.
Interviews were transcribed verbatim and analysed thematically by KK.11 The 52-week interviews were coded deductively and inductively using the 12- and 18-week thematic analysis framework, with additional codes from the 52-week data added to the framework. A sample of transcripts were cross-checked by CH, followed by discussion between KK and CH, to inform the final thematic framework used to undertake final coding. Data were stored and organised using NVivo Software (QS International Play Ltd. Version 12.6).
Ethical approval was received from the Health Research Authority (REF 21/WM/0126) and Leeds Beckett University (REF 107887 and 79441).
Participant demographics were largely representative of the overall LCD pilot population sample, according to interim data presented to the advisory group in summer of 2023. Participant characteristics are presented in Table 1.
Five core themes were derived from the data: 1) personally meaningful outcomes; 2) support for behaviour change; 3) relationships with the coach and provider; 4) support networks, and 5) looking forward.
Personally meaningful outcomes (Table 2)
Participants reflected on their weight and glycaemia levels at 52 weeks, and highlighted a mix of experiences related to these outcomes. Many participants self-reported being in diabetes remission and no longer needing medication as they were discharged from the programme and had maintained weight loss throughout the programme, but some still sought further weight loss. Some participants reported regaining weight above their baseline and a return to elevated glycaemia.
In addition to the measures routinely collected by the service providers, participants shared positive experiences across personal measures of success. They included improvements in psychosocial wellbeing, quality of life and day- to-day physical functioning such as being able to put on their own shoes, playing with grandchildren, walking without breathing difficulties or sitting more comfortably in aeroplane seats. The positive experiences also included changes in physical appearance such as fitting into clothes not worn in years, and not being recognised. Weight loss also resulted in improvements to social relationships, as participants were able to be more active with their family and friends. Positive impacts of the programme on the health of family and friends were also discussed, such as family members adopting healthier eating habits and achieving weight loss.
Support for behaviour change (Table 3)
The sessions delivered during the weight maintenance phase focused on encouraging long-term changes in healthy eating and physical activity behaviours, with some providers providing pedometers and encouraging walking challenges that were reported at each session. Some participants talked positively about the ways in which they were more active, whether alone or with family and friends, and many felt this was associated with maintaining their weight loss. There was also increased awareness of the nutritional value of foods and the proportion of different types of foods that make up a balanced meal. Participants said they were making healthier choices because they had a better understanding of the impact of food and drink on their health. This knowledge helped them to change behaviours relating to cooking and shopping.
For some, there were challenges adopting healthy behaviours due to ongoing emotional eating, with a perception that, despite having improved their nutritional knowledge, the programme had not sufficiently addressed the ‘mental side’ of eating behaviour, resulting in a resumption of using food to help cope with emotionally challenging personal circumstances.
Relationships with the coach and provider (Table 4)
The behaviours and approach of the coach, and of the provider, appeared to influence the participants’ motivation and general impressions of the programme. Coaches were generally considered to be supportive, showing empathy, responding to concerns, and tailoring session delivery to the needs of the group or individual participant. However, some participants shared examples of practice which had impacted them negatively: for example, when the coach named individuals in group sessions who had met their goals, those who had not achieved their goals were left feeling shamed. If they encountered different coaches during their programme journey, participants sometimes noted inconsistency in delivery styles and reported an impact on the development of participant- coach relationships, with some sessions being very ‘slide-heavy’ and thus limiting time for personalised support.
Making contact with the coach outside the sessions was reported to be difficult by some participants; examples were described of making contact with the provider but not being called back. Experiences with call centre staff were often regarded as unsatisfactory, with queries not being addressed effectively and a lack of person-centredness. One example was repeated contact being instigated by the provider to obtain routine monitoring information (such as weight and glucose levels) following a bereavement.
Support networks (Table 5)
Outside the formal sessions, informal support networks with peers, family and friends and healthcare professionals were reported as important. For participants taking part in group sessions, peer support had developed through WhatsApp groups during earlier stages of the programme. This peer-led support via WhatsApp decreased during the weight maintenance phase. Participants discussed the social support that they wanted and received from family, friends and colleagues, which included receiving compliments about changes to their appearance, motivation for exercise, and reduced pressure to eat unhealthy foods. While the support and encouragement of healthcare professionals was reported by participants to be motivating, it was noted that not all had in- depth knowledge of the programme or participants’ progress.
Looking forward (Table 6)
Participants' aspirations for the future varied: some aimed to achieve further weight loss, while others sought to attain or sustain their diabetes remission through maintaining lifestyle changes. Fear of regaining weight and hyperglycaemia was expressed, with the potential for improving health acting as a motivating factor for behaviour changes. Some participants reported exploring further options for managing their weight, with many planning to continue using Total Diet Replacement (TDR) products, having had the experience of four weeks of ‘rescue’ TDR offered in the event of weight regain (termed by some providers a ‘reset’).
Service users were interviewed longitudinally at three time points along their NHS LCD programme journey. The interviews sought to explore the real-time experiences of service users to help understand how the programme works for different people, what barriers and enablers are along the way, and how future services could be improved. This paper shares the experiences of participants at the end of the WM phase (52 weeks), as they were about to complete or had recently completed the LCD programme.
Improvements in psychosocial outcomes and physical functioning appeared as important as clinical outcomes to participants. Whilst clinical measures are an integral part of monitoring efficacy, patient-reported outcomes and goals are known to be key factors for motivation.12,13
The importance of increased levels of physical activity observed in participants at 18 weeks continued into the weight maintenance phase.2 Here, participants positively associated physical activity with maintenance of weight loss and glycaemic improvements. The benefits to functional fitness, overall health and the wider impact on family members were facilitators to ongoing activity.
Several participants reported continued use of TDR products outside the four-week rescue package provided as part of the programme.4 This prolonged use was said to help regulate energy intake, support continued weight loss or provide a method to manage periods of weight regain. The intention to use TDR in this way was also reported in the participant survey and previous clinical trials.14,15 Whilst TDR product use is considered safe and effective in the short term, further research is needed to explore implications associated with longer-term use.
The relationship with their coach was seen as important by participants and was affected by delivery approaches as well as continuity. The relationship between coach and service user can influence levels of trust and information shared.16 Suboptimal communication between coaches, other staff within the service provider and healthcare professionals in general practice was highlighted by some participants; improving this may support better service user experience.17
The provision of personalised support was regarded as being of major importance. Some participants reported needing support after the end of the programme, and were considering options such as commercial weight management programmes, bariatric surgery and weight loss drugs. While most participants noted positive experiences, not all found the programme to be successful for them, with some reporting weight regain; this was attributed by some to challenges transitioning from TDR to a healthy diet, managing emotional eating and adopting healthier behaviours.
Strengths and limitations
This paper presents unique participant experiences at the end of their NHS LCD programme journey. The longitudinal design of this study facilitated trust and openness between researchers and participants during the interviews, and produced a greater depth of understanding. Due to participant drop-out, the final sample did not include service users from the face-to-face, one-to-one delivery model, and as such this experience is not reflected within the data presented. This study provides experiences of service users interviewed up to the completion of the programme at 12 months but the longer-term outcomes of the LCD programme remain unknown. A follow-up study conducted a year after completion of the programme would provide clearer insight into the longer-term outcomes of the LCD programme.
Recommendations for policy, practice and research
Consideration should be given to routinely monitoring additional outcomes which may be meaningful for service users. Providers should aim to support continuity between participants and coaches to support the development of coach-participant relationships.
Support outside the sessions should be strengthened, with emphasis on the provision of person-centred care.
Increased communication between provider and primary care is required to improve service users’ experience throughout the programme.
Providers should aim to address the individual needs of participants, including support or signposting to help with emotional eating. This may be facilitated by one-to-one delivery.
Consideration should be given towards the provision of peer support.
Commissioners, providers and healthcare professionals should consider providing clearer messaging relating to the ongoing use of TDR products.
Further research is required on the support needs of service users following completion of the programme and the physiological and psychological impact of prolonged TDR use.
The NHS LCD programme has been life-changing for some participants. This study provides unique insights to help further understand the enablers and barriers to effective programme delivery and outcomes, and it provides several recommendations for ongoing service improvements and research requirements.
© 2024. This work is openly licensed via CC BY 4.0.
This license enables reusers to distribute, remix, adapt, and build upon the material in any medium or format, so long as attribution is given to the creator. The license allows for commercial use. CC BY includes the following elements: BY – credit must be given to the creator.
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Conflict of interest The authors declared the following potential conflicts of interest with respect to the research, authorship and/or publication of this article. Louisa Ells has received funding from NIHR, MRC, Leeds City Council and OHID/PHE in the last three years and has had an honorary contract with OHID. CB is a primary care adviser to the national diabetes programme for NHS England. KC is the Chair of Trustees Patient Charity WLSinfo, Chair of Trustees ECPO, Member of the Patient advisory board for Boehringer Ingelheim and sits on the Advisory board for Eli Lilly.
Funding This work was supported by the National Institute for Health Research, Health Services and Delivery Research [NIHR 132075]. The NHS LCD programme is funded by NHS England. For the purpose of open access, the author has applied a Creative Commons Attribution (CC BY) licence to any author accepted manuscript version arising. The views expressed in this publication are those of the author(s) and not necessarily those of the MRC, NIHR or the Department of Health and Social Care.
Acknowledgements The authors would like to acknowledge Clare Helm from NHS England, who has worked on the coproduction of this study and identification of study aims and who provided feedback on an earlier draft of this manuscript.
The authors would also like to acknowledge the Patient and Public Involvement team that have worked on the coproduction of the Re:Mission study, including Mike Willis, Gulsoom Akhtar, Beth Clegg and Clair Goddard. Members of the steering and oversight groups are also acknowledged by the authors for their input and involvement in the Re:Mission study, including the clinical lead Dr Mark Ashton.
The Re:Mission study includes a multidisciplinary team of academics from across the North of England. The authors would like to acknowledge the team, including Dr Jamie Matu, Prof Jim McKenna, Dr Maria Maynard, Pat Watson, Dr Susan Jones, Dr Simon Rowlands, Dr Tanefa Apekey, Dr Stuart Flint, Prof Janet Cade, Dr Adam Martin, Dr Maria Bryant, Dr Wendy Burton, Mick Martson, Pooja Dhir and Tamla Evans.
Ethical approval Ethical approval was received from the Health Research Authority (REF 21/WM/0126) and Leeds Beckett University (REF 107887 and 79441). Participants provided informed consent to participate in the Re:Mission study, including consent for publication. All participant data were anonymised and where photos have been used in publications or presentations, permission was sought from each participant.
Developed from:
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care. 2007. Volume 19, Number 6: pp. 349 – 357
Personal Characteristics:
Dr Catherine Homer PhD (Female). Associate Professor of Obesity and Public Health with experience working in academia and extensive experience working in public health.
Karina Kinsella MRes (Female). Research Officer for the Re:Mission Study with extensive experience of evaluating interventions.
Dr Tamara Brown PhD (Female). Reader in Obesity, with 5 years’ experience of focus groups and research in weight management.
Dr Kevin J Drew PhD (Male). Post-doctoral Research Fellow with 7 years’ experience of
conducting qualitative evaluations of health-based interventions.
Dr Jordan Marwood PhD (Female) Research Fellow with extensive experience conducting obesity research with particular focus on disordered and emotional eating.
Dr Duncan Radley PhD (Male). Reader with 25 years’ experience conducting obesity research,
and previously research manager in weight management service providers.
Charlotte Freeman (Female). Project research officer with experience of evaluating interventions in academia and primary care services as well as experience of working in public health.
Dr Abimbola Ojo PhD (Female). Member of the Patient and Public Engagement team for Re:Mission and Local Authority Public Health Specialist.
Dr Jennifer Teke (PhD) (Female) Member of the Patient and Public Engagement team for Re:Mission and Hospital Trust Research Manager.
Ken Clare (Male) Patient and Public Engagement Lead. Director of Bariatric and Metabolic Surgery Support at a national patient advocacy charity.
Dr Chirag Bakhai (Male), General Practitioner, Clinical Lead on the Re:Mission Study Oversight group and Primary Care Advisor to the NHS Diabetes Programme
Dr Louisa Ells (Female). Professor of Obesity with a specialist interest in multi-disciplinary, cross- sector applied obesity research, with extensive experience of leading programme evaluations.