Codesigning a Community Health Navigator program to assist patients to transition from hospital to community

We conducted qualitative interviews between July and November 2021 prior to the workshop. The questions were pilot tested with community workers from another project in general practice. After this the questions were simplified to be more readily understood (Supplementary File S2). The reasons for the research were described in the participant information and consent form. Consent was obtained verbally and sent for signing after the interview.

Interviews were conducted online (using video and audio) one-to-one or in pairs, upon participant request, and in English. We offered to conduct interviews in the participants own language where this was not English. All interviews were recorded except for one where hand-written notes were used at the participant’s request. All interview participants were invited to attend the subsequent codesign workshop.

The codesign workshop comprised participants and members of the research team. Two meetings were held with consumer and community organisation participants prior to the workshop to discuss their needs, build trust, and familiarise them with the information presented. These meetings aimed to minimise power imbalances during the workshop, which could impede participation of less powerful or marginalised participants and support these participants to contribute equally.

The 2-hour workshop was facilitated by MH, MP, and CS and conducted in a secure online environment (Microsoft Teams) on 18 November 2021 (Supplementary File S3). At this workshop, a summary of the findings from the literature and the initial interviews was presented. The facilitators then introduced questions about the main issues experienced by participants in the transition from hospital to community and the support they thought that CHNs might provide. These questions were discussed in groups of six participants followed by a large group discussion. The small groups were carefully constructed considering representation from all groups, hierarchy of roles, and to allow in-depth discussions (see Supplementary File S3). The main and small group sessions were recorded and transcribed along with notes from the research team.

We conducted 26 (female = 19 and male = 7) interviews with four medical specialists, three clinical nurse consultants, two CHWs, three health managers, three consumers, three GPs, one practice nurse, one community leader, one hospital and one community pharmacist, and four bilingual health workers. Twenty-one one-to-one interviews were conducted in English. One interview was conducted in Bangla by an experienced bilingual researcher (SKM). Two interviews were conducted with pairs of participants because the participants requested this. Interviews lasted 19–54 min (mean 35 min 12 s).

Workshop participants included 16 of those interviewed. Ten of those participants who were interviewed were not available for the workshop and an additional two were recruited. The 18 participants were divided between three small groups.

We categorised the themes under four headings: Problems identified after hospital discharge; Potential roles of CHNs; Training and supervision; and Factors influencing adoption of CHN roles, training, and supervision. The type of respondent quoted is indicted in parentheses with the source coded as I (interview) or W (workshop).

Most participants felt that the role of CHNs would be most suited to supporting patients from CALD backgrounds, elderly patients, or those with chronic conditions, especially those with complex medication regimens. The navigators could play a role in supporting the people more vulnerable or at risk of hospital readmission with advice post discharge.

And do they know what to do next when they go home? ... or have just said, yes doctor, but haven’t really understood everything, and they’re the ones, again who it all just falls in a heap when they go home, because they haven’t actually understood the medication changes. Or they haven’t understood that they were meant to go to a follow-up clinic, and things like that. (Health Manager, I)

Participants felt that CHNs could assess the patient’s needs. These included the language and cultural support that they required, their understanding and attitudes to their own treatment, their living conditions, access to necessities of life, ability to access health care and adherence to medications, and family and social support.

Most people feel that they are adequately supported when they get reviewed in hospital, and it’s not until they come home and realise how hard it might be, that they might need a little bit more additional support. (Clinical Nurse Consultant, I)

Participants felt that CHN effectiveness in supporting patients depended on first establishing a trusting relationship so that patients could be confident that they would be supported in navigating their health and accessing services appropriate to their needs.

I envisage it is a very health literate friend or relative who’s quite close to the person and knows their details from the early stages … [and] can assist that navigation process through to completion. (Medical Specialist, W)

Participants considered that CHNs could assist patients with establishing clear communication and prevent them from falling through the cracks post-hospital discharge, especially for those not fluent in English. Bilingual CHNs could ensure that people post discharge were followed-up closely and that everything that needed to be was actioned. Participants felt that addressing language and cultural barriers involved more than just using an interpreter or translating the information but required more time to be spent communicating with patients.

We forget that for somebody, this might be their first experience at the hospital, and the whole thing is so overwhelming. They’ve never had contact with the aged care system before, it’s like a foreign language. It needs to be more systematic, and the person’s understanding checked to make sure they are clear on that. (Pharmacist, I)

However, while participants felt that CHNs could play a role in education, some were concerned that they needed to know their limits especially about clinical care.

Because I’m not being rude, but the community health worker doesn’t know what they don’t know in regard to skill set and a knowledge base. (Clinical Nurse Consultant, I)

CHNs were seen as identifying any new health concerns and supporting patients to adhere to care plans, to self-manage or seek help. CHNs needed to be able to identify and address a range of practical problems that patients may be experiencing after discharge:

Make sure they get to the GP, look at their medication, understanding the medication compliance, making sure their nutrition is adequate, making sure their mobility issues have been addressed or is there a problem in the bathroom that needs sorting. (Medical Specialist, I)

While not setting clinical goals, participants felt that trusted CHNs could check that patients understood and agreed with their goals and priorities with their health professionals, especially where shared decision making had not occurred.

It is important for patients and GPs to agree on their management goals – for example, what changes to physical activity, diet, smoking, or alcohol consumption. (Community Health Worker, I)

Participants envisaged that CHNs would support family and carers where appropriate in providing support to patients especially those who were elderly or culturally and linguistically diverse.

For my other family members, I remember when they had some surgeries or whatever, some of them is living independently and no English, so it is very scary for them once they leave, because they’re not living with us and they’re living by themself. (Community Health Worker, I)

CHNs could identify patients who were distressed and then discuss with their supervisor or manager who could refer accordingly. CHNs could help communicate with family members and provide culturally appropriate support. Patients on discharge may experience a raft of physical needs including the quality and security of the home environment, access to food, financial support, help with shopping etc. CHNs could assess these and, if needed, arrange further support.

Some live on their own, some have good English and good health literacy, and some do not. Some have sound accommodation, some are renting, some are living in various supported accommodation, some are living in boarding houses. Some can drive a car; some are really transport limited. (Clinical Nurse Consultant, I)

In order to provide this support, CHNs need to know local services that were tailored to patients’ needs (including language and culture).

So it’s about how you set up your community visitors, so that they’re across all the services. (Consumer, I)

Participants emphasised the importance of supporting patients with medications, especially where there had been changes:

Someone who has had multiple medication changes or even they just need to be compliant with the usual medicines, but particularly I guess when there are multiple medication changes ... it can be very confusing. The pills we give in hospital are completely different to what is received at home. (Pharmacist, W)

Some participants suggested that CHNs could review the patient’s discharge letter and check they had all their medications. However, others stressed that review of the reasons behind medication adherence (such as side effects) could only be performed by someone who was clinically trained.

CHNs could also assist patients in making appointments (or phone on their behalf) and attend appointments (including telehealth appointments) with the patient and provide advice on how to engage and what to ask. Participants considered that the role included helping patients to visit their GP and/or pharmacy and arranging transport for those with no transport or who were unable to use public transport.

Whether that be another appointment, an outpatient appointment, or simply just seeing their GP for continuous prescriptions of new medications, or different dosages, or things that have happened, whatever has been changed for them. (Pharmacist, I)

Some participants with lived experience felt that, with appropriate training and supervision, CHNs could advocate for care, especially for older people who live on their own, and conduct follow-up visits after discharge from the hospital.

So, I think they have a real role as being health advocates, but not necessarily quite understood always or valued. (Consumer, I)

The potential roles and tasks and their likely impact are summarised against the patient problems identified in Table 1.

The acceptance of the role of CHNs by health professionals and patients was seen by participants as the most important factor influencing their adoption. Most participants believed that CHNs would be accepted if they could be of practical benefit to patients, especially older people who lived alone, did not speak English very well, were socially isolated, or had complex health conditions.

Participants felt that CHNs needed to be selected on the basis of their ability to communicate and establish rapport with patients.

You have to have some kind of trust in the individual and the way you gain that trust is by not asking deeply personal questions, but the simple things, like, ‘How are you today?’ (Consumer, I)

Most felt that CHNs could establish trust with patients and the health services. However, some felt that CHNs’ lack of formal training and qualifications would prevent them being able to perform their roles in the health care team.

They felt that patients’ acceptance and expectations of a CHN could be enhanced if other staff explained the role of the CHN in the healthcare team and CHNs were bound by the same professional obligations as other health practitioners especially confidentiality.

There has to be a framework around that where I think that person has some confidence that there is confidentiality or saying that the information that they are receiving and conveying has the same legal status as when they speak to the doctor so that it’s not going to be gossiped around the community, etc. (Medical Specialist, I)

Several participants stressed the importance of CHNs being accountable not only to the health system and their healthcare team but also to the community they serve.

So it needs to have ownership, ownership in the community sector. (Community Leader, I).

Participants differed in where they thought CHNs should be based and employed: community members felt it should be within the community sector; GPs thought CHNs should be located in general practices; and SLHD staff thought they should be incorporated into existing healthcare teams to ensure adequate supervision.

Role conflicts with other health professionals were thought to have the potential to de-rail broader adoption of CHNs and their place within the healthcare teams.

I’ll speak as [a Registered Nurse], we don’t like the thought of CHWs taking our territory and that’s very confronting for our registered nurses, and all my colleagues would agree very much. And it’s the kind of thing that if my mum was at home, I’d actually prefer a registered nurse attending and working all this sort of stuff out rather than the community health worker. (Clinical Nurse Specialist, I)

Participants suggested role conflict may be at least partially addressed by carefully defining the role as a non-clinical one with clear lines of supervision and accountability.