An educational intervention for unpaid/family carers of patients with breathlessness in advanced disease: developing a web-based resource

Abstract

Background

Chronic refractory breathlessness is distressing, disabling, and common in advanced disease. Unpaid/family carers provide support for patients, but often lack knowledge and confidence, experiencing anxiety which can lead to crises. The Learning about Breathlessness programme (LaB) sought to address this. Working with carers and clinical experts, the LaB1 Study identified six topics carers of patients with breathlessness due to cancer or chronic obstructive pulmonary disease (COPD) want to learn about breathlessness, and how they want to learn. To accommodate carers’ varied learning preferences a web-based educational intervention was proposed, with four delivery modes: self-accessed, or accessed via peer-led support groups, established clinician-led groups, or in clinician one-to-ones. The 2-stage LaB2 Study sought to co-develop the web-based resource, suitable for these delivery modes and mapped to carers’ learning needs identified in LaB1.

Method

Building on LaB1, website content was co-developed iteratively through qualitative interviews, focus groups and workshops with bereaved carers, current carers, and patients living with breathlessness due to cancer or COPD (n=24), and with a Carer Advisory Group and Study Advisory Group (included clinical experts) (Stage 1). User feedback on the prototype website was then collected from carers, patients and clinicians (n=16) using ‘think-aloud’ interviews enabling website refinement through an iterative process (Stage 2).

Results

The co-developed web-based resource, “Supporting Someone with Breathlessness”, covers the six topics carers wanted to learn about and is designed to meet cancer/COPD carers preferences in terms of ways of learning. As such it includes words, pictures, film clips of peer carers and clinical experts, links to other resources and downloadable leaflets. Carers, patients and clinicians confirmed content utility and acceptability and suggested enhancements which enabled refinement. User feedback suggested the utility of the four potential delivery modes.

Conclusion

To the best of our knowledge, “Supporting Someone with Breathlessness” is the first website dedicated to meeting the needs of unpaid/family carers of people with breathlessness in advanced disease: https://supporting-breathlessness.org.uk/. The content and format of this nationally endorsed web-based resource were guided by an evidence base of carer educational need and learning preferences. Design features ensure content is accessible for those without digital access.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1186/s44247-026-00309-1.

Background

Chronic refractory breathlessness is a common symptom of a range of advanced conditions (such as chronic obstructive pulmonary disease, cancer, heart failure and neuromuscular disease), persisting despite treatment of the underlying disease and prevalent globally [1]. It is distressing, disabling, and isolating for those experiencing it, and patients usually require the support of an unpaid/family carer who can also experience distress and isolation [2–6]. The UK’s National Institute for Health and Care Excellence (NICE) [7] uses Thomas et al.’s definition of unpaid/family carers (herein “carers”): “lay people in a close supportive role who share in the illness experience of the patient and who undertake vital care work and emotion management” [8].

Carers of patients with respiratory conditions or breathlessness in advanced disease experience some unique burdens and support needs. They can lack knowledge and confidence [9] and experience rates of depression and anxiety equal to that of patients [2, 3]: clinically significant anxiety and depression symptoms have been reported in 64% and 34% of chronic obstructive pulmonary disease (COPD) carers respectively (2). Gysels et al.’s (2009) qualitative study of carers of patients with COPD reported that these carers share the burden experienced by many caring for those with other chronic progressive illnesses but also have concerns directly related to COPD [4]. Johnson et al. (2012) found through population-based surveys that carers of people who died from end-stage respiratory disease provided care over a longer duration than carers of other people with end-stage organ failure [5]. They had unmet needs relating to help with physical care, information about the disease, and emotional and spiritual support [5]. Currow et al. (2018) highlighted how maintaining the caring role over such long periods is one of the greatest demands that anyone can experience and that the more breathlessness the person, the greater the burden on the carer [6]. They went on to note that ensuring carers are supported is crucial, but that carer education is rarely given systematically [6]. Similarly, Flemming et al. (2019) noted that carers have information and educational needs throughout the illness trajectory and that when carers lack information or support this added to the strain of caregiving [10]. Further, the James Lind Alliance palliative and end of life care Priority Setting Partnership identified skills, training and information for carers as one of the top ten priorities in its 2025 refresh of their palliative and end of life care research [11]. In relation to breathlessness specifically, we also know that clinicians want to support carers of patients with breathlessness but that they lack resources to do so; carer support is mostly a “by-product” of patient clinic attendance [12].

Meeting the educational and support needs of carers requires robustly developed and evaluated interventions. To address this the Learning about Breathlessness (LaB) programme took an approach based on the Medical Research Council (MRC) framework for complex interventions [13] and the principles of educational planning [14] to develop an educational intervention for carers of patients with breathlessness in advanced disease. Underpinned by a systematic narrative review of educational interventions for carers [15], the LaB programme comprised two projects: LaB1 and LaB2. LaB1 [9, 12, 16] was a mixed method study involving interviews, focus groups and workshops with carers and patients, a clinical expert workshop, and online survey of clinicians. It identified the need and desire for an intervention among carers [9] and clinicians [12], six topic areas carers needed and wanted to learn about in relation to supporting someone with breathlessness [9], and content for five of the six topics [16]. The six topics were: (1) understanding breathlessness, (2) de-escalating anxiety and panic, (3) keeping active, (4) living positively, (5) managing infections, and (6) what to expect in the future [9]. To our knowledge, LaB1 was the first published study to describe in detail the unmet educational needs of carers of patients with breathlessness in advanced disease. It provided the evidence-base for the content of an educational intervention for carers to address these needs – the development of that carer intervention is the focus of this paper.

LaB1 also identified wide variation among carers regarding their preferences for ways of learning [16]. This related to the intervention timing, process (which, for some, included a desire to learn with the patient they supported), mode of delivery, structure, and format. To accommodate the variation in preferences for the timing, process, and mode of delivery of the intervention a flexible web-based resource was proposed, accessible via four delivery modes: (1) self-accessed, (2) accessed in peer-led support groups, (3) accessed in established clinician-led groups, or (4) via clinician one-to-ones. Although three of these modes directly accommodate individual carers who are non-web users, have limited digital skills, limited reading skills or health literacy issues (modes 2–4), LaB1 found web-access high in this carer cohort. This finding is supported in the UK by ONS reporting that 92% of the population had internet access in 2020 (54% for those aged 75 years or more) [17]: rising figures, particularly amongst more socially deprived groups. Further, information and communication technology (ICT) is increasingly recognised as a way to provide accessible and flexible support to carers [18], and the potential for web-based ICTs to meet carers’ informational, learning and psychosocial support needs has been noted [19]. Online resources can improve understanding of information, reduce unmet needs and increase engagement in self-management [20]. To accommodate the variation in preference for structure and format, a menu-driven web-based resource for carers was therefore proposed, centred around the six carer-identified topics [9] and including both written and visual material (including short film clips), links to other resources, and downloadable content.

Web-based resources that seek to provide information on breathlessness (or conditions that cause breathlessness) do exist but are designed for patients, rather than carers. Such resources were not designed to meet carer-identified, carer-specific, needs. Further, existing websites that are designed for carers relate to generic carer topics and do not address specific needs related to supporting someone with breathlessness in advanced disease; a systematic review of reviews conducted by Marco et al. (2021) identified disease-specific knowledge as one of carers’ key needs [21]. An evidence-based resource for this specific group of carers was therefore warranted.

Working with carers, patients, and clinical experts, LaB1 co-developed draft content for five of six carer-identified topic areas for the web-based resource. It also identified uncertainty around content for the topic of “What to expect in the future” (Topic 6) – the current carers who took part knew they needed and wanted to learn about this topic but, as they had not yet been through the entire patient/carer journey, they were unsure what its content should be i.e., what it would be useful to learn about. Therefore, and given its sensitivity, Topic 6 required additional dedicated work with bereaved carers who had been through the whole journey.

LaB2 therefore built on LaB1 by first finalising topic content for topics 1–5, then identifying topic content for Topic 6 (“What to expect in the future”) with bereaved and current carers to co-develop a web-based resource suitable for the proposed four delivery modes and mapped to carers’ learning needs identified in LaB1. The aim of this paper is to describe this co-development and optimisation of the web-based intervention for carers of patients with breathlessness in advanced disease within LaB2. The term “patients” is used throughout this paper (and the web-based intervention) as this was the term preferred by the carers we worked with. The product of the work reported here is available at https://supporting-breathlessness.org.uk/.

Methods

Study design

In this applied qualitative two-task study, Task 1 established topic content with bereaved and current carers relating to the topic of “What to expect in the future” (Topic 6), whilst remaining sensitive to potentially co-present patients. Task 2 then co-developed the prototype web-based resource, and iteratively refined it with carers, patients, and healthcare professionals (HCPs). This aligns with the Person-Based Approach, which combines Patient and Public Involvement (PPI) and professional co-production with in-depth qualitative methods to understand and accommodate the views, needs and experiences of intervention users [22]. An overview of the study tasks is provided in Fig. 1.

Fig. 1.

Overview of the study tasks

Ethics

The study received ethics approval from National Research Ethics Service (NRES) Committee London - Stanmore (Reference number 18/LO/1704). Written informed consent was obtained from all participants. The study protocol included the presence of a supportive contact at the bereaved carer focus groups (SH: highly experienced senior nurse). It also enabled referral of current carers, or patients, to the Cambridge Breathlessness Intervention Service (CBIS) or to an emotional support contact if required (JB: highly experienced specialist occupational therapist with CBIS). Clinical trial number: not applicable.

Task 1: establishing content for “What to expect in the future” (Topic 6)

The objective for Task 1 was to develop content for the topic of “What to expect in the future” (Topic 6) that met carers’ educational needs whilst being sensitive to potentially co-present patients.

Bereaved carer focus groups

Our pre-study PPI work with carers, combined with our experience of delivering other carer studies, suggested that gaining the perspectives of bereaved carers, with their benefit of hindsight, would give greater insight on the topic of “What to expect in the future”; LaB1 had only involved current carers. Thus, focus groups with bereaved carers of patients with breathlessness due to advanced disease explored what carers could learn about the topic that might help, and how this learning could sensitively be achieved with potentially co-present patients.

Focus groups are suitable for obtaining a range of perspectives about a topic. For potentially vulnerable groups, such as the bereaved, focus groups are particularly helpful in enabling participation of those who might not think they have enough to contribute on their own, and there is less likelihood of the researcher dominating conversations [23]. The study team held expertise in working with bereaved carers but were additionally guided by Briller et al.’s special considerations for conducting bereavement focus groups [24]. Interviews were also offered to those who were unable to join a focus group.

Bereaved carers (6–9 months post-patient death: timed for sensitivity to death anniversaries) of deceased patients who had lived with breathlessness due to COPD or cancer (the most common causes of breathlessness in advanced disease) were recruited from the East of England via primary care (facilitated by the Clinical Research Network [CRN]), secondary care (facilitated by the CRN and secondary care clinicians within the co-applicant team), hospices, and support groups (facilitated by established relationships with groups). Multiple recruitment sources were used given the known challenge of recruiting carers [25–28], and bereaved carers in particular. Box 1 outlines the eligibility criteria. Eligible bereaved carers were largely identified through the personal knowledge of health professionals.

Box 1.

Participant eligibility criteria

Task 1: Bereaved carers Bereaved carer inclusion criterion: previous unpaid/family carer of a patient who experienced breathlessness due to COPD or cancer, where patient death occurred 6–9 months previously Bereaved carer exclusion criterion: unable to provide informed consent

Task 1 & Task 2: Current carers and patients Current carer inclusion criterion: unpaid/family carer of a patient with breathlessness due to COPD or cancer Patient-carer dyad inclusion criterion: patient with breathlessness due to COPD or cancer and their unpaid/family carer Patient/carer exclusion criterion: unable to provide informed consent

Task 2: Health care professionals HCP inclusion criterion: HCP working with carers and patients living with breathlessness due to COPD or cancer HCP exclusion criteria: none

Those eligible were sent a recruitment pack by the clinical site or support group lead. Recruitment packs for each LaB2 task comprised a letter of invitation, participant information sheet, reply slip, and stamped-addressed reply envelope. All LaB2 carer (and patient) facing recruitment packs were designed with PPI involvement. Interested potential participants replied directly to the study team and were contacted to answer any questions and arrange their focus group. Written informed consent was taken at the group, prior to data collection. Table 1 summarises recruitment site types and response rates for all tasks.

Table 1.

Recruitment site types and rates

Site	No. packs distributed	No. of acceptances	No. consented
TASK 1 – Bereaved carers
Hospice 1	19	1	1
Hospice 2	3	0	0
Hospital 1 (palliative care team)	26	5	4
Hospital 1 (respiratory team)	6 (estimate)	1	0
Hospital 2 (specialist breathlessness service)	3	1	1
Hospital 2 (respiratory team)	7	1	1
Hospital 3 (thoracic oncology team)	7	2	1
Support Group 1	1	0	0
Support Group 2	0	0	0
Support Group 3	1	0	0
GP practice 1	10	4	3
GP practice 2	5 (estimate)	0	0
GP practice 3	3	1	1
GP practice 4	3	0	0
GP practice 5	3	0	0
Task 1 – Bereaved carers totals	96	15	12
TASK 1 – Current carers (C) and patients (P)
Hospice 3	1 (C + P)	2 (C + P)	2 (C + P)
Hospital 2 (oncology team)	1 (C)	1 (C)	1 (C)
Hospital 3 (thoracic oncology team)	5 (C + P/C)	2 (C x2)	1 (C)
Support Group 1	11 (C + P)	2 (C + P)	2 (C + P)
Support Group 2	6 (C + P)	6 (C + P x3)	6 (C + P x3)
Task 1 – Current carers and patients totals	24	13	12
TASK 2 – Current carers (C), patients (P) and HCPs
Hospice 1	7 (HCP/C + P/C)	3 (1xC + P, 1xHCP)	3 (1xC + P, 1xHCP)
Hospice 2	4 (C + P/C)	3 (1xC + P, 1xC)	3 (1xC + P, 1xC)
Hospital 1 (oncology team)	1 (HCP)	1 (HCP)	1 (HCP)
Hospital 2 (specialist service)	6 (HCP/C + P/C)	4 (1xHCP, 1xC + P, 1xC)	4 (1xHCP, 1xC + P, 1xC)
Support Group 1	4 (C + P/C)	3 (1xC + P, 1xC)	3 (1xC + P, 1xC)
Support Group 4	6 (C)	1 (C)	1 (C)
Pulmonary Rehabilitation 1	1 (HCP)	1 (HCP)	1 (HCP)
Task 2 – Current carers (C), patients (P) and HCPs totals	29	16	16

Twelve bereaved carers took part across two focus groups and six interviews. Of the two focus groups, one was for former carers of patients with COPD, and one for former carers of patients with cancer, with four and two participants in each respectively (small group size guided by our previous experience of conducting bereaved carer focus groups). The interviews involved four former carers of patients with cancer, and two former carers of patients with COPD.

The focus groups were held in pleasant, easily accessible, non-medical venues (hotel meeting rooms) with refreshments, and a supportive contact present (SH), and a breakout room; interviews were conducted in participants’ homes. The focus groups were co-facilitated by two researchers (MF/SB), supported by our PPI carer co-applicant (RL). The topic guide (see Supplementary File 1) was designed to explore participants’ experiences of supporting someone with breathlessness and identify important aspects of what current carers might expect in “the future” (with the bereaved carers’ benefit of hindsight), what they would have liked to have learnt about this (and why), and how they could have learnt this with a potentially co-present patient. Discussions were audio-recorded (with permission). Follow-up calls were made the following day to check on participants’ wellbeing; participants were warned of this call at the end of the focus group and warned that they may feel tired from taking part. Thank-you cards were also sent.

Audio recordings were transcribed, anonymised, and imported into NVivo software to facilitate qualitative data management. Transcripts were analysed thematically using Framework Analysis [29]. Framework was the analytic method of choice given the relatively structured nature of the data (generated through topic-guided focus groups) and the involvement of a multidisciplinary study team (including PPI carer co-applicant), as Framework is beneficial where not all team members have previous experience of conducting qualitative research [30]. Analysis included establishing differences or comparability by disease group and exploring interactions within the groups: a hallmark of focus groups is that group interaction is analysed and considered important data [31]. Co-analysis by the project lead (MF) and study researcher (SB), conducted independently and then compared, permitted inter-analyst clarification of coding and emerging themes, enhancing reliability. A co-investigator (GE) supported interpretation of emergent findings, with validation sought through expert confirmation from a dedicated PPI Carer Advisory Group (CAG; n = 5 bereaved and current carers) and Study Advisory Group (SAG) which included multidisciplinary clinical experts. The findings were then used to draft the main and subpages for Topic 6 (with clinical expert input from the SAG) using the same language and style as Topics 1–5, followed by CAG (PPI) review.

Current carer and patient workshops

Current carers and patients living with breathlessness due to COPD or cancer were recruited from the East of England using successful strategies for carer and patient recruitment from LaB1 i.e., the same sources as for the Bereaved Carer focus groups. Given that our aim in these workshops was to recruit patients as well as carers (and in the absence of carer registers in primary, secondary and most hospice care settings at the time), recruitment packs delivered from clinical care settings were mailed to patients, as well as to known carers. Box 1 outlines the eligibility criteria. Eligible patients and carers were identified through a combination of medical record audit and the personal knowledge of health professionals.

Potential recruits were sent a recruitment pack by the clinical sites or via support groups. Pack content was as above in terms of the types of materials included but were worded for both patient and carer recruitment (rather than two separate packs). Interested potential participants (patient-carer dyads or carers alone) replied directly to the study team and were contacted to answer any questions and arrange their workshop. Written informed consent was taken at the workshop, prior to data collection. Table 1 summarised recruitment site types and response rates for the workshops.

Two workshops with current carers and carer-patient dyads were held involving seven carers and five patients: one group for carers and patients living with COPD, and one for carers and patients living with cancer each (modelled on the successful similar workshops conducted in LaB1 for Topics 1–5). Workshops were held at similar venues to those for the bereaved carer focus groups, with refreshments and a supportive contact provided (JB). The workshops were co-facilitated by the two researchers (MF/SB), supported by our PPI carer co-applicant (RL). The workshops were guided by a workshop plan (see Supplementary File 2) covering review of paper mock-ups of the main and subpages for the topic in terms of content, wording, and images (to ensure relevance and acceptability), and carer-identified strategies addressing the sensitivity of potentially co-present patients. Data were audio-recorded and processed as above.

Transcripts were analysed using content analysis (conventional) [32, 33] to identify preferences for the topic content, wording, and images, and carer and patient views of the acceptability of content for potentially co-present patients. Conventional content analysis was the method of choice as it gains direct information from study participants without imposing preconceived categories or theoretical perspectives [33]. Workshop findings enabled refinement of the drafted main and subpages for the topic of “What to expect in the future” (Topic 6), which were reviewed by the CAG (PPI) prior to production and iterative refinement of the whole website within Task 2. Tables of Changes were used to record refinements and their rationale [34, 35].

Task 2: co-developing the web-based resource

Task 2 prototyped the web-based resource and then iteratively refined it with carers, patients, and HCPs. To do this the study team finalised written and visual content for the main and subpages for each topic (based on the findings of LaB1 and LaB2-Task 1) whilst ensuring consistent language and style. In addition, copy for the home page and resource pages (e.g., including “How to use” and “Meet the team” sections and a feedback page) was developed, and the website name co-developed with the CAG (PPI), ready for website prototype production, user feedback and iterative refinement.

Developing web-based resource prototype

Using the copy, and supported by the study team, a website development company worked with an NHS Media Studio to create the initial prototype. Working with the study team, the Media Studio film crew produced short film clips with current and bereaved carers, patients, and clinical experts to embed in the web-based intervention (e.g., carers talking about strategies they had found helpful with various aspects of supporting someone with breathlessness). These carers and patients were known to, and invited by, clinicians and researchers from the LaB2 co-applicant team and their contacts; the clinical experts filmed were clinicians from the LaB2 co-applicant team. All signed a Media Studio General Model Release form. The website logo was developed through an iterative process involving the study team, a graphic designer from the website development company, and the CAG (PPI).

User feedback

Three sets of user-types fed back on the website prototype through one-to-one qualitative think-aloud interviews to inform refinement: current carers, carer-patient dyads, and HCPs. Think-aloud interviews require respondents to verbalise their initial reactions, while exploring the website in the presence of a researcher [36].

Carers and patients living with breathlessness due to COPD or cancer were recruited using the successful strategies and sources outlined above. HCPs were recruited from relevant clinical teams (e.g., community respiratory teams) through their organisational structures. Box 1 outlined the eligibility criteria.

Potential carer and patient participants were sent a recruitment pack (content as above) either by the clinical site or via support groups. HCP recruitment packs were sent by email. Interested potential participants replied directly to the study team and were contacted to answer any questions and arrange their interview. Written informed consent was taken prior to interview. Table 1 summarised recruitment site types and response rates for Task 2.

The think-aloud interviews were conducted by the study researcher (SB) with four carers, four carer-patient dyads and four HCPs: 16 participants in total (eight for each disease group). They were conducted at a location with internet access to enable prototype website viewing (e.g., University premises or participants’ homes for patients/carers, or place of work for HCPs). Interviews were topic-guided (see Supplementary File 3 and 4) to explore views on the acceptability of the resource, its name, its usability (website layout, ease of navigation, and page content), the film clips and images, the experience of using it and how it might be used (to inform refinement of the “how to use” text). Data were audio-recorded and processed as above.

Transcripts were analysed using content analysis (conventional) [32, 33] to identify views and experiences across and within user types (carers, patients, HCPs) and broad diagnostic groups. We then worked with the web-developers to refine the web-based intervention to reflect the feedback; this involved an iterative process through cycles of feedback and refinement additionally involving the CAG (PPI).

Results

Task 1: establishing content for “What to expect in the future” (Topic 6) – bereaved carers views

The twelve bereaved carers who took part in Task 1 described a range of different caring experiences and stories. The twelve comprised six former carers of someone with COPD, and six of someone with cancer; one former carer also had COPD herself. There were eight spouses (five wives, three husbands), three adult children (two sons, one daughter), and one adult sibling (sister) of someone with breathlessness.

Three broad thematic areas were identified in the data. The first thematic area was ‘As the patient’s illness/breathlessness got worse’ and encompassed six sub-themes: (1.1) Changes in patients’ symptoms, (1.2) Denial and hope, (1.3) Understanding the dying process, (1.4) Satisfaction with care, (1.5) Practical advice and planning ahead, and (1.6) Tension between needs of carers and patients. The second thematic area was ‘After the patient died’ and encompassed four sub-themes: (2.1) Practical post-death advice, (2.2) Difficult emotions, (2.3) Sources of support, and (2.4) Benefit finding. The third thematic area was ‘Viewing this topic with the patient’ (no sub-themes). Box 2 provides an overview of the three themes and subthemes, with supporting quotations. What was notable was that these bereaved carers did not talk about caring for themselves, who supported them, or things that helped, their focus was on the challenges they faced and what went wrong.

Box 2.

Overview of the themes and subthemes for establishing content for “What to expect in the future” (Topic 6) – bereaved carers views

1) As the patient’s illness/breathlessness got worse Six sub-themes: (1.1) Changes in patients’ symptoms, (1.2) Denial and hope, (1.3) Understanding the dying process, (1.4) Satisfaction with care, (1.5) Practical advice and planning ahead, and (1.6) Tension between needs of carers and patients

1.1) Changes in the patients’ symptoms Bereaved carers described changes they observed in the patients’ symptoms, but also their surprise and lack of preparedness for these changes. The changes were often unexplained and sudden: “She was in and out of hospital probably every third or fourth week with an infection…It would have been nice to have that explained to us…why this is happening” [BC01-016, cancer] They described how both they, and the patients, were emotionally affected: “A lot of people said, ‘Cor, you’ve lost weight’. But, of course, you do, you know, anxiety and stress and everything” [BC01-020, cancer] They would have appreciated explanations or advice for how to cope with these changes and emotional sequelae: “But till you realise that they’re not eating, you think, “Well, why aren’t you eating?” – a good point that was important is that their appetite will slip off” [BC01-017, COPD]

1.2) Denial and hope Carers described how patients, carers themselves and other family members had some degree of denial: “We both knew what palliative care meant but neither of us would accept that – that was the inevitable” [BC04-010, cancer] One carer felt it wasn’t worth pushing a patient to confront death: “If someone is in denial and won’t accept it and won’t talk about it you can’t make them” [BC03-010, cancer] Some felt medical staff didn’t make it clear the patient was terminal: “The palliative care consultant did kind of drop the hints. But I guess they don’t want to say, ‘Look, your wife’s going to die…’” [BC01-010, Cancer] Some felt knowing earlier may have helped them prepare and make the most of their time together: “In hindsight, I wish I’d have known it was coming because we had no preparations, we didn’t talk about death, she was too young” [BC04-010, cancer] Whereas others weren’t sure if they would have wanted to know: “I think possibly it was better that I didn’t know more about it” [BC01-010, cancer]

1.3) Understanding the dying process Carers (and patients) were unclear about how their patient would die: “She thought she was going to have a very painful death through suffocating… she slid away. I think that would have given her and I a bit of peace of mind knowing that she wasn’t going to have the horrific drowning death” [BC01-016, cancer] Many COPD carers were surprised by how quickly their patient died given their long illness trajectory: “We couldn’t believe it when the phone rang, and they told us he’d died. You know, it was like ‘this can’t be true’, you know, ‘he’s been like this so long’” [BC01-000, COPD]

1.4) Satisfaction with care Almost all the bereaved carers mentioned aspects they were happy with, and some became tearful when talking about high quality of care they received including from their hospital palliative care team, a virtual ward sister, a community matron, Breathe Easy nurses, and GPs. “The hospital was very good. Done an awful lot for Mum where they knew very early it was going to be terminal. They did a lot to support her, but under a huge pressure” [BC03-010, cancer] However, all the bereaved carers felt dissatisfied with some aspect of care including being excluded from patient treatment decisions, lack of out of hours support, poor continuity of care from hospital to home, and lack of direct explanations to carers (for example, regarding prognosis and the meaning of ‘palliative’). Many still had unanswered questions and had been unsure who, how or when to ask for help. They felt they had to be assertive to get questions answered: “I actually did think a lot about people who maybe […] are not like me, haven’t got the confidence…to go and say ‘now, come on, do something …what’s going on, I need this’” [BC01-008, cancer] They felt excluded from important conversations about their patients’ care and had to push to be kept involved: “What I found really difficult was being kept out of it, even though I was his Power of Attorney, and I was his Next of Kin… I was always quite assertive, and it got to the point where they included me in all of their consultation meetings, but I felt it was a real uphill struggle” [BC05-010, COPD]

1.5) Practical advice and planning ahead Many felt there was very little time towards the end to read advice or plan ahead: “We were making decisions out of necessity rather than planned, if that makes any sense? So we were having to make more kneejerk decisions rather than a planned one” [BC01-017, COPD] Carers mentioned a range of practical things that helped when caring for the patient including ‘magic words’, such as taking on the label of “carer”.

1.6) Tension between needs of carers and patients Carers mentioned conflict between what they thought was best, and what the patient wanted: “My mum wouldn’t want to go into hospital. It was terribly frustrating because I knew it was the best place for her to be” [BC01-017, COPD] They also had questions they wanted to ask, but didn’t want to do so in front of the patient to protect them, and not over burden them: “because you don’t tend to tell the patient ‘well, you might do this and you might do that’, you kind of want just the carers to know so the patient isn’t bothered or worried” [BC01-008, cancer]

2) After the patient died Four sub-themes: (2.1) Practical post-death advice, (2.2) Difficult emotions, (2.3) Sources of support, and (2.4) Benefit finding

2.1) Practical post-death advice Carers were unprepared for the amount of practical and administrative jobs that needed to be done once the patient had died: “It takes a long time to get things sorted afterwards” [BC03-010, cancer] Many noted challenges with completing these jobs such as managing their grief alongside completing tasks and not knowing how to report the patient’s death: “Maybe encouraging people to have a word with solicitors, legal advisors and […] make very, very sure there’s a will, and as clear a will as possible” [BC03-010, cancer] Several said how helpful it was to have arrangements organised together with the patient, in advance: “We’d sorted it out and she’d talked to the funeral directors, got the plan of everything, there was very little I needed to do” [BC01-008, cancer]

2.2) Difficult emotions Carers struggled with a range of difficult emotions after the patient had died including shock, guilt, sadness and anger. “Even though you’re expecting it […] there’s a shock you mustn’t underestimate” [BC01-008, cancer] “A little bit of guilt because at times I was hard on my mum because I didn’t fully understand what she was going through” [BC01-017, COPD] “I’m furious! I’m angry that…it could take a 58-year-old wife who’d got everything to live for” [BC04-010, cancer] Some also said the grief was delayed until all practical arrangements had been organised and they were left alone: “It may not even hit them until a couple of days afterwards because you are, up until that point, absolutely focused” [BC01-008, cancer] Several carers also mentioned a wider social issue of people generally being unable to discuss death, making their grieving even more difficult: “We don’t talk about it as a society. It’s a taboo subject […] I can understand it’s very hard but there should be some encouragement to talk about it” [BC01-008, cancer]

2.3) Sources of support Carers noted helpful sources of support and advice for coping emotionally once the patient had died such as books, websites, support groups, friends and family and health care advice and counselling. “You can get counselling and why not go and see. It could be something that will help you through it a little sooner or easier” [BC01-008, cancer] “Try and have someone to talk to… I think also, as a man, it’s harder having close people to be able to talk to than a woman… everyone’s different and find their own means of doing things” [BC03-010, cancer]

2.4) Benefit finding Carers mentioned some positives that came from caring for the patient, including becoming close with them, making new friendships and learning housekeeping skills: “We got so close, closer than I thought we’d ever be. You think you’re close to someone, a sister or whatever, and we felt we were pretty close, but we both said we got SO close, we talked about things we’d never talked about” [BC01-008, cancer]

3) Viewing this topic together The bereaved carers could see value in viewing this topic together, but some also gave notes of caution: “Hearing about someone else’s experiences… that might have opened her up to talk to me more openly about it or… for me to broach the subject more often” [BC01-017, COPD] “I think she would have enjoyed looking at something that was helpful, maybe, for her but […] she would be thinking how helpful it would be for me” [BC01-008, cancer] “I personally think it is up to the individual [patient]. I think they will make it clear if they want to talk about these things because, if they don’t, it might play on their mind and make them upset” [BC03-006, COPD]

Task 1: establishing content for “What to expect in the future” (Topic 6) – working with current carers, patients, and clinical experts

Box 3 illustrates the initial stages of the development of the Topic 6 (What to expect in the future) webpage content. It shows how ideas for content were underpinned by Task 1’s bereaved carer findings and subsequent CAG (PPI) meetings (following presentation of these findings), the questions then posed to SAG to inform content development, and some key suggestions for refinement from Task 1’s current carer and patient workshops.

Box 3.

Development of Topic 6 (What to expect in the future) webpage content ideas

Topic 6 (What to expect in the future) webpage content ideas	SOURCES: Research findings from LaB1 and LaB2 Task 1 with bereaved carers*, plus CAG (PPI) meeting notes underpinning webpage content idea	Key questions posed to SAG (re webpage content idea)	SOURCES: Research findings from LaB2 Task 1 with current carers and patients (viewing webpage mock ups) underpinning webpage refinement
Introduction section
Thinking about the future can be difficult – hard to know when and how to start	LaB2 ‘denial and hope’ [1.2] + CAG CAG felt it was difficult to get their patients to talk about the future. Described how denial can stop you from saying goodbye but hope also keeps you going	How can we encourage carers to talk about the future?	Agreed important to warn people about Topic 6 content Didn’t like the term ‘tips and tricks’ – preferred ‘help’ and ‘advice’
Important to think about and plan for the future	LaB1 + LaB2 ‘practical advice and planning ahead’ [1.5] + CAG
Brief description of what is in this topic – warning	LaB1 + LaB2 ‘viewing this topic together’ [3] + CAG
Carers and patients may find it helpful to look at this together – some carers may prefer to do this on their own time	LaB1 + LaB2 ‘viewing this topic together’ [3], ‘practical post-death advice’ [2.1], ‘benefit finding’ [2.4] + CAG
Talking about the future with others
Talking about the future can be hard - denial is common, and may want to protect the patient	LaB1 + LaB2 ‘denial and hope’ [1.2], ‘tension between needs’ [1.6], ‘viewing this topic together’ [3], ‘practical post-death advice’ [2.1], ‘benefit finding’ [2.4] + CAG CAG felt their patients didn’t want to talk about the future, making wills etc. CAG mentioned alternative tactics – getting wills done together, using humour or taking advantage of sales.	Is this best presented as a video? By whom?	Wanted a video with carer, patient and HCP
Outline of some benefits in talking the patient/others, but also not pushing subject
Advice for ways to broach topic with others
As the patient’s condition changes
Outline and explanation of typical disease trajectory – COPD and cancer specific including dying	LaB1 + LaB2 ‘changes in patient symptoms’ [1.1], ‘understanding dying process’ [1.3] + CAG CAG noted important to make clear how up and down COPD can be. Also to make it clear that an increase in symptom severity and hospital trips are not failings by the carer and patient.	What would be a good title for this section? Is dying process usually ‘peaceful’?		Wanted video of HCP talking about what to expect COPD – important to stress that COPD is unpredictable, and changes can be sudden Preferred ‘illness’ to ‘condition’, ‘disease’ or ‘symptoms’ Rename section as ‘When a patient becomes more unwell’
Common treatment side effects e.g. chemotherapy, steroids	LaB1 + LaB2 ‘changes in patient symptoms’ [1.1]
Tips and advice for managing changes (links to other parts of website and other resources)	LaB1 + LaB2 ‘changes in patient symptoms’ [1.1]
Common emotional challenges carers and patients might face	LaB2 ‘changes in patient symptoms’ [1.1] + CAG
Accessing care and support
Outline the need for accessing appropriate care and support particularly during final stage and challenges	LaB1 + LaB2 ‘satisfaction with care’ [1.4], ‘practical advice and planning ahead’ [1.5] + CAG CAG knew they needed to look after themselves but felt this was much easier said than done. Some said they felt guilt leaving the patient, others also said the patient/carer felt the carer provided the best care and didn’t want to leave the patient.			Advised suggesting carer has key notes about patient’s medical history. Should mention or link to information about financial supports available.
Brief explanation of rights and special role as ‘carer’ (advocate)	LaB2 ‘satisfaction with care’ [1.4]
Who is on your team?
Overview of different levels of care and their roles at this stage – what is palliative care?	LaB2 ‘satisfaction with care’ [1.4] + CAG CAG felt they didn’t understand what ‘palliative’ meant and wanted a section on this on the website. Also noted important to make sure wording is patient/carer friendly e.g. not ‘primary care’ but ‘family GP’, ‘GP practice’ etc.			Liked the explanations given of ‘primary’, ‘secondary’, ‘tertiary’
Overview of typical types of healthcare professionals and their roles	LaB2 ‘satisfaction with care’ [1.4]
Communicating with HCPs
Tips and tricks to help communicate with the health care team e.g. taking on carer role, using palliative care patient label, integrate own need with those of the patient	LaB2 ‘satisfaction with care’ [1.4] + CAG CAG did not know what a DNR was, nor how to get one organised	What should these questions be? What should carers and patients understand?		Encourage carers to ask questions if they don’t understand Add conversation prompts to help
List of helpful tips to ask health care team e.g. are there any ‘magic words’?, what (changes) should I look out for?	LaB2 ‘satisfaction with care’ [1.4], ‘practical advice and planning ahead’ [1.5] + CAG CAG noted that carers need to be encouraged to ask more questions
Brief advice about raising questions in front of patients	LaB2 ‘satisfaction with care’ [1.4], ‘denial and hope’ [1.2], ‘tension between needs’ [1.6] + CAG
After the patient has died
Normalise the types of emotions and challenges carers can face once their patient had died	LaB2 ‘difficult emotions’ [2.2] + CAG CAG noted important to make clear depression is not grief and that grieving is a normal process CAG mentioned ‘what will I do when he’s gone?’	Any suggestions for names for this section?		Add double loss of patient and healthcare team for carer Add point about changing utilities, bank accounts Suggested adding a ‘moving on’ section
Simple explanation of grief with links to other resources	LaB2 ‘difficult emotions’ [2.2], ‘sources of support’ [2.3] + CAG
List of possible sources of support carers could use	LaB2 ‘difficult emotions’ [2.2], ‘sources of support’ [2.3]
Section listing some of the practical, administrative jobs carers may need to undertake and links to other websites	LaB2 ‘practical post-death advice’ [2.1], ‘sources of support’ [2.3]
Benefit finding/learnings/gains
Short film clip where a carer shares some things they gained or learned from caring for the patient	LaB2 ‘benefit finding’ [2.4] + CAG
Include something around finding new meaning, purpose to life.	Relates to CAG comment above: ‘what will I do when he’s gone?’

* = theme/subtheme number italicised in square brackets

Task 2: co-developing the web-based resource – the prototype

Following Task 1, the prototype web-based resource was produced including all six topics identified in LaB1. Box 4 shows how the naming of the topics was slightly modified for two of the topics from the names given in LaB1.

Box 4.

Topic naming

	LaB1 topic name	Topic name on website (modified names italicised)
Topic 1:	Understanding breathlessness	Understanding breathlessness
Topic 2:	De-escalating anxiety and panic	Stress, panic and breathlessness
Topic 3:	Keeping active	Keeping active
Topic 4:	Living positively	Living a fulfilling life
Topic 5:	Managing infections	Managing infections
Topic 6:	What to expect in the future	What to expect in the future

The website was designed to be menu-driven to meet individual carers’ learning needs through each of the six topics. Some of the topics required condition-specific content, therefore each topic included a button to click to access content related to either COPD or cancer as the two leading causes of breathlessness in advanced disease (for some topics the content was the same, but the two condition “buttons” were include for all six topics for visual appeal). The menu-driven nature of the website was also included to enable the four proposed “delivery” modes: self-accessed, in peer-led support groups, established clinician-led groups, or clinician one-to-ones. For example, in group settings a different topic could be explored during each group meeting to generate group discussion. The website was designed to include text, pictures, images and film clips with carers, patients and clinical experts mapped to the learning preferences of carers identified in LaB1, as illustrated in Box 5. The name of the website (“Supporting Breathlessness”) and logo were co-developed with the CAG (PPI).

Box 5.

Mapping carer learning preferences to website design featuresox

LaB1 carer-identified learning preferences	Website design features developed in LaB2
Video or web-based (although some wanted reassurance of website provenance)	Website including short film-clips Website badged with university and funder logos, an ‘About Us’ page included listing the study and co-applicant team, and information on how the resource was developed
Leaflets (there was leaflet overload for many carers and patients, but some still wanted paper-based resources)	Downloadable individual leaflets for each topic, by condition, plus downloadable cover page to create a booklet on all six topics
Face-to-face or group learning	Menu-driven: in group settings a different topic could be explored during each group meeting to generate group discussion. Website includes ‘How to Use’ guides for carers and clinicians
Personalised / individualised	Menu-driven Website includes ‘How to Use’ guides for carers and clinicians
Learning with the patient (not every topic)	Menu-driven
Visual information	Pictures (photos and figures) and short film-clips as well as text
Clinical experts and peer-carer experience	Short film-clips of experts and peer carers
Signposting to resources	‘Links and Resources’ page included

Task 2: co-developing the web-based resource – user feedback

Think-aloud interviews then explored the prototype website with 16 participants to capture user feedback: four current carers on their own, four carer-patient dyads, and four HCPs (comprising three physiotherapists and one nurse); all were evenly balanced in relation to the two diagnostic groups.

The overall feedback was positive. The website was described as ‘professional-looking’, ‘credible’, and ‘safe’. The six topics were felt to be suitable. Users liked the calming and inviting colours and graphics. The language was pitched at an appropriate level. Points for improvement centred around making the text easier to read (e.g., using a darker colour and larger font), navigation issues (e.g., simplifying the homepage and labelling of disease-specific content), making the first screen of videos an image (rather than plain white), and making content about tools and what the carer can do more prominent. Box 6 provides illustrative quotations from Task 2 carers and clinicians relating to their feedback on the website overall; data on how many participants viewed which pages/content and which pages were most frequently viewed and illustrative quotations relating to website features is provided in Supplementary File 5.

Box 6.

Illustrative quotations from Task 2 carers and clinicians relating to the website overall

Task 2: Carers “You can only benefit from it. […] it’s important for people who are looking after their partner or wife or an elderly family member to understand what to do […] and how to help as best as possible […] invaluable for that.” [Carer 01–025] “So it does offer something which the others don’t which is it is a carer-focused […] it looks more at I suppose the social and relational aspects of being in this situation which is useful” [Carer 01–014]

Task 2: Clinicians “It feels very professional and watching the video at the beginning and reading the blurb on the very first page makes you feel this is a safe, professional website that I can trust” [Cancer clinician 03–016] “I like the topics. It’s not just managing the symptom but the stress, panic, keeping active and living a positive life.” [COPD clinician 03 − 002]

Finalising the website

The final version of the website was produced reflecting Task 2 feedback, then published [37]. Task 2 and PPI informed additions included a downloadable guide on how carers and patients with breathlessness due to causes other than COPD or cancer could use the website, and promotional materials for the website (promotional cards and mock prescription pads) for clinicians to use with carers and patients. Finally, website endorsement was sought from a range of nationally and internationally recognised relevant organisations: they placed links to the website in carer, patient and clinician facing newsletters and on their websites e.g., NHS England (‘Shortness of Breath’ webpage), British Lung Foundation (now Asthma + Lung UK), British Heart Foundation, Royal College of General Practitioners, Respiratory Futures, Primary Care Respiratory Society, International Primary Care Respiratory Group, and the Queen’s Nursing Institute.

Discussion

The generic needs and impact of the caring role on carers are well-established. Informed by this, a 2022 editorial by Payne et al. on carer research in palliative care called for rigorous research on intervention development to meet carers’ needs [38]. The LaB programme addressed this by developing an evidence-based intervention for carers supporting someone with breathlessness in advanced disease, available at https://supporting-breathlessness.org.uk/.

Described by others as “a meticulous program of work” [39], the LaB programme sought to meet the educational and support needs of these carers by robustly developing an evidence-based intervention mapped to their learning needs and preferences. Currow et al. [6] proposed that a routine approach to educating carers of people with breathlessness that addresses their concerns, ideally jointly with the patient, should increase caregiver confidence, improve self-efficacy, and potentially reduce emergency hospital attendance, which mostly occur during “out-of-office” hours when responsibility lies heavily with family members [40]. Further, LaB1’s survey of 365 relevant HCPs identified additional gains from carer education for both patient and HCP knowledge on managing breathlessness in advanced disease, over and above those of carers [12].

In response, the LaB programme developed a web-based resource with relevant and appropriate content for carers of people with breathlessness in advanced disease. It did so by working with bereaved and current carers, patients, HCPs, an NHS Media Studio and experts in website design through an iterative series of activities. The resulting website is unique in that it focuses on, and addresses, the needs of carers of patients with breathlessness due to advanced disease. Utilising the web as a platform for the resource ensures content fidelity and ease of updating (thereby supporting futureproofing), but the website was designed so that its content can be used offline as well as online, at no cost to the user, and usable by carers individually or within existing structures e.g., as an intervention in support groups and HCP consultations.

Three key strengths of this work were (1) recruiting across a range of services rather than just through specialist palliative care [38], (2) its alignment with the Person-Based Approach [22], which ensured the view of the target users were understood and accommodated, and (3) working with bereaved as well as current carers.

First, multi-site recruitment beyond specialist palliative care was essential to enable recruitment to target, as evidenced in Table 1, but also ensured that a range of carers (in terms of both the support they may have experienced for themselves and the disease groups they supported) were invited to participate.

Second, alignment with the Person-Based Approach meant working with those who might (a) use (carers), (b) provide (HCPs), or (c) enable (HCPs) the intervention (i.e., recommend or refer carers to it or use it in their practice) [22]. Ensuring stakeholder acceptability and fulfilling end-user needs are key to successful models-of-care [41], maximising feasibility/impact [42]. The foreword of a National Institute for Health and Care Research (NIHR) School for Social Care Research report on carer research, written by carers themselves, noted that good research will include the voices of people using health and care services, carers, and health and social care professionals; it also noted the beneficial impact on the direction and impact of a study from involving carers from the outset [43]. A similar approach was taken by Allemann et al. (2023) in their co-design of an online support programme for carers of people with heart failure [44]; they reported how involvement of end-users in the design and development of healthcare interventions provides valuable learning opportunities and enables meeting end-user information and support needs thereby optimising their self-care abilities. This co-design message is repeatedly seen in the growing literature relating to the development of digital interventions (for example: [20, 45–48]). The LaB2 Task 2 finding that current carers found the six topics appropriate is a good testament of this given that they were built on the findings from carers in LaB1; it shows how this approach enabled us to meet end-user (carer) needs.

Third, the work with bereaved carers in Task 1, as a specific strength, is worthy of additional discussion. This was facilitated by working with small groups, providing adequate time for carers to process the experience of participating, planning for distress management, ending discussions on a positive note (such as finding benefit from the carer experience), providing an informal lunch to enable debriefing at the end, and establishing researcher support mechanisms (the importance of the latter being noted by Silverio et al.’s reflective piece on conducting qualitative research on sensitive, challenging and difficult topics [49]). Having a protocol for distress management was identified as one of a series of strategies for improving the conduct of palliative care research with family carers [50] – the presence of a supportive person and breakout room in Task 1 was invaluable. The follow-up phone calls made to bereaved carer participants the following day to check on their wellbeing were also appreciated. In the groups and interviews these bereaved carers were able to express what they would have liked to have known regarding “what to expect in the future”, thereby enabling the creation of sensitive website content mapped to their learning needs when active carers. Knowing “what to expect in the future” has been established as one of the key areas of carer support need in other carer samples [51–53]. Further, some of the subthemes on this did not relate specifically to breathlessness but were generic bereavement issues.

In terms of the website itself, the use of different media (the website includes words, pictures, photographs and film clips) has been reported to provide a way to connect and improve understanding of health information [54]. The inclusion of short film clips on the website reflects World Health Organization best practice in digital resources i.e., the need for short and focused messages [55]. Further, the website’s endorsement and promotion by respected organisations (as well as by HCPs) and linkage from other reputable websites is a key strength. The importance of clinical endorsement of digital health interventions and the relationship of endorsement with intervention engagement has been noted [56, 57]. Endorsement also addresses issues previously raised by Tbalvandany et al. 2018 [58] about the reliability concerns relating to online resources. The website is also cited in an official American Thoracic Society policy statement on palliative care in serious respiratory illness [59]. These various endorsements, as well as giving confidence in the website, helps to raise HCP awareness of it; ensuring both carer and HCP awareness of the website is clearly key to its uptake. Tonsaker et al. (2017) note that strategies to raise awareness about high-quality online health information are an important knowledge translation objective for such resources [57]. Thus the website’s inclusion of carer-advised downloadable promotional materials (e.g., promotional cards and mock prescription pads for clinicians to use with carers and patients, plus waiting room posters with a QR code) is therefore a further strength.

Digital resources may not equate to, or take the place of, interpersonal and in-person engagement with a healthcare team [60], however, in the specialist space of managing breathlessness in advanced disease, curated relevant content from HCPs (particularly generalists) may not be accessible to all carers. Further, the move from analogue to more digital resources is certainly part of the future of the NHS [61]. Further, design features of the website (such as its menu-driven content and downloadable leaflets) mean that it can also be used within healthcare encounters as an intervention. Being an online resource could also increase accessibility [62], and being menu-driven could increase personalisation, compared to attending an in-person course at a set time with no control over content. Two examples underline this need for personalisation, particularly in relation to the topic of knowing what to expect in the future: first, LaB2 current carers (Task 1) identified questions they wanted to ask, and areas of learning they wanted to have, but separately from the patient, and, second, LaB1 cancer carers were keener to learn with patients than COPD carers were.

There are five limitations of this work. The first relates to the focus on COPD and cancer carers only. Payne et al.’s 2022 editorial called for carer studies to include disease groups beyond cancer [38] – this was achieved but only as far as including COPD. To further address this the website includes a downloadable guide for carers of patients with other, less common, causes of breathlessness in advanced disease. Future versions of the website could include material for carers of patients with conditions such as interstitial lung disease for example. A second limitation is that it is possible that the higher proportion of one-to-one interviews with bereaved cancer carers (n = 4), compared to COPD carers (n = 2), may have impacted findings. For example, the subtheme on “Denial & hope” was largely derived from the cancer carers. Thirdly, there was very little ethnic diversity among the carers who took part – future work could seek to address this or evaluate relevance to ethnically diverse carers. Fourthly (and likely a reason for the lack of ethnic diversity), recruitment of carers and patients was limited to one geographical region: the potential transferability of the findings and preferences for the web-based resource to other regions of the UK and internationally needs considering, however recruited HCPs were drawn from nationally. And, fifthly, although three of the proposed modes of delivery of the intervention directly accommodate individual carers who may have limited digital skills, limited reading skills or health literacy issues (modes 2–4), we did not explicitly seek include people with health illiteracy or low reading levels in the co-development (although it is possible that some were involved but did not disclose this). However, in Task 2, one HCP gave positive feedback about the downloadable leaflets on the website (“They like a folder of info to take home and if you signpost anybody to websites and things, sometimes, they joke and say, ‘We don’t own a computer, dear’” [01–011 HCP Cancer]) and another welcomed the inclusion of film clips on the website: “We have patients that do eventually admit that they can’t read and things like that, so, yes, in the videos you can hear that, you get the gist, so that’s quite good” [01–011 HCP Cancer].

A final discussion point relates more broadly to futureproofing of web-based resources: given that this intervention is a web-based resource there is the need for continued funding to ensure its sustainability (domain name and support retainer contract). The increasing number of web-based or digital interventions means this is likely also an issue for others. Meticulous programmes of work are to be applauded but where these relate to web-based or digital interventions, additional resources may be required to sustain them in the longer term and should be considered by intervention development funding bodies.

Conclusion

To the best of our knowledge, the Supporting Breathlessness website is the first website dedicated to meeting the needs of unpaid/family carers of people with breathlessness in advanced disease. The content and format of this nationally endorsed website were guided by an evidence base of carer educational need and learning preferences. Design features were included to ensure content was accessible for those without digital access. Developed to support carers directly, as well as to respond to HCP calls for interventions and resources to support carers, the website has the potential to also support people experiencing breathlessness in advanced disease through joint learning.

Supplementary Information

Below is the link to the electronic supplementary material.

Abbreviations

C

Current carers

CAG

Carer advisory group

COPD

Chronic obstructive pulmonary disease

CRN

Clinical research network

HCPs

Health care professionals

ICT

Information and communication technology

LaB

Learning about breathlessness

MRC

Medical research council

NIHR

National institute for health research

P

Patients

PPI

Patient and public involvement

SAG

Study advisory group

Author contributions

MF, GE contributed to the conception or design of the work; all authors contributed to the acquisition, analysis, or interpretation of data (MF, SB, RL, JB, SH, RM, DG, IM, KG, CT, GE); all authors contributed to the creation of the website (MF, SB, RL, JB, SH, RM, DG, IM, KG, CT, GE); MF, SB, KG, GE, IM drafted the work or substantively revised it. All authors read and approved the final manuscript (MF, SB, RL, JB, SH, RM, DG, IM, KG, CT, GE).

Funding

LaB1 funding: Dimbleby Cancer Care. LaB2 funding: This project is funded by the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-1216-20022). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Additional website resource funding: This study/project is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE) at Cambridgeshire and Peterborough NHS Foundation Trust. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Prof Morag Farquhar, University of East Anglia, is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE) at Cambridgeshire and Peterborough NHS Foundation Trust. The views expressed are those of the author[s] and not necessarily those of the NIHR or the Department of Health and Social Care. Prof Chris Todd is a co-investigator on the National Institute for Health and Care Research, Applied Research Collaboration-Greater Manchester (NIHR200174) and holds National Institute for Health and Care Research Senior Investigator Awards (NIHR200299 & NIHR205156). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, the Department of Health and Social Care, or its partner organisations.

Data availability

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

The study received ethical approval from National Research Ethics Service (NRES) Committee London - Stanmore (Reference number 18/LO/1704). Written informed consent was obtained from all participants before taking part in the study. Participants were assured that the data gathered would remain confidential, and they could withdraw from participation at any time, without giving a reason. All procedures were carried out in compliance with the ethical principles of the Declaration of Helsinki.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.