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The importance of the carer

A look at the role of the carer in the patient journey and wider healthcare.
Man in wheelchair with a hand on his shoulder.

In the previous section, we looked at the patient roles as described by Vanessa Carter. Also important in the patient journey, although often overlooked by hospital practices and policies, is the role of carers. This section by Surya Surendran outlines this importance.

Define 'carers'. Carers include family members, friends, or any other person associated with the patient who provided care from them either when hospitalised or at home, without expecting any financial return.

The majority of the current, limited infection-related patient involvement initiatives in inpatient care originate from high-income settings. This leads to the generalisation of findings without considering the economic and culture variations across countries.

This oversight may be particularly significant where societal structures and cultural traditions attribute greater importance to patient’s social networks. For example, in many low- and middle-income countries (LMICs), people live amongst extended family members which may include several generations in the same household. Furthermore, during the patient’s admission to hospital, family members are present as carers along with them, providing psychological and emotional support to the patient.

The involvement of family members in the inpatient journey has the potential to shape clinical activities, including infection prevention and control (IPC) practices.

In this section, we will be discussing the results from a recent study which explored the extent and nature of the involvement of carers in the experience of patients undergoing surgical procedures through an ethnographic study.

An ethnographic study of carer contributions to the patient journey.

As part of this ethnographic study, we conducted non-participant observations in the patient wards and interviews with healthcare workers, patients and carers. This study analysed the various international, national, and local guidelines of IPC to reflect on the expected role of carers.

A summary of the key findings can be seen in the infographic below.

Carers are not seen as assets but as potential infection risks to patients. HCWs expected carers to perform IPC related activities in hospital or at home. Carers did not receive any standard or formalised training. Training and information provision for carers was not routinely provided. Need to recognise carers as a critical resource in patient care.

Carers were not seen as an asset but as individuals whose presence and behaviour potentially presented an infection risk to patients. For example, special precautions for isolated patients was largely identified by all major guidelines. This relative invisibility of carers’ full-time presence by patient bedside in guidelines and policies was highlighted in the views expressed by healthcare workers (HCWs), who consider the patients and carers roles in IPC to be restricted to hand hygiene practices.

Despite this, HCWs still expect the carers to perform IPC related activities whilst in hospital or at home. Though all care is provided by HCWs in the ICU, on the wards carers support the patient and are expected to be involved in their care. Carers are approached by HCWs for a range of activities, from fairly mundane ones such as obtaining details regarding the patients, to crucial decisions that need to be made about clinical care. Since communication happened mostly between the HCWs and carers, decisions regarding patient care were sometimes negotiated exclusively by the carers. In turn, patients often reported in the interviews that they had no idea about what was happening in their care.

Even though they were very involved in patient care, carers do not receive any standard or formalised training to prepare them for their role. Carers will pick up post-discharge responsibilities, for example dressing techniques for wound care, by learning on the go. The lack of adequate training and information provided for carers risks wound contamination and infection.

Carers bring such lay expertise and knowledge of the individual patients’ illness that should be acknowledged in efforts to include them as part of the care team.

We have seen how policies tend to focus on reducing the infection risks posed by carers’ presence and behaviour or identifying a role for them in encouraging HCWs to perform IPC practices, for example, challenging HCWs to wash their hands. Instead, we need to recognise them as a critical resource who, if supported and educated adequately, could contribute to the care of patients in the hospital and on discharge in the community.

A carer accompanying a child do their doctor's appointment. The carer has their hand placed on the patient's shoulder whilst the doctor uses a stethoscope.

In settings where families remain at the patient bedside to assist HCWs, care roles have been largely overlooked. This has meant carers are unprepared and unsupported in these roles, receiving little training or guidance. Studies reporting on education of family members have detailed benefits on IPC outcomes.

Many of the activities carried out by carers in this study, where dependence on family members as caregivers is high, were similar to those provided by HCWs in the global north. Having HCWs interact with the carers as legitimate members of the patients care team, and recognise their role in patient care, has the potential to lead to optimised patient outcomes. This will enable carers to have a better understanding of patient needs, and important contextual information with regards to their care. Furthermore, engaging with carers in optimal practices around infection-related care in hospital and at home can reduce transmission of infection.

Whilst international guidelines on patient care propose that national strategies tailor patient and carer education to the local context, such tailoring may require that family-centeredness is adopted and promoted to fit to the cultural norms and traditions.

The following table summarises the findings from the study and recommendation put forth to improve recognition and support for the role of carer. You can read more about this study here.

If you require a screen-reader compatible version of the above infographic, the pdf is available here

The key findings, their implications, and recommendations for future practice. Adapted from: Surendran et al., 2022. Indispensable yet insivible: A qualitative study of the roles of carers in infection prevention in a South Indian hospital.

Whenever you are ready, click ‘next’ to move on to the next section where we will discuss the importance of the public.

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