Family involvement as a strategy to enhance patient care in low‐income country hospitals despite limited resources

Hospitals in low-income countries face many challenges when it comes to availability of staff and resources. These constraints often impede the delivery of comprehensive care and resources need to be strategically allocated to prioritising critical tasks. One of the greatest challenges facing hospitals in low-income countries is the scarcity of healthcare personnel. This compromises quality of care and exacerbates the strain imposed by large patient numbers. Healthcare workers are compelled to prioritise tasks based on urgency and, as a result, admitted patients are often not regularly monitored. Still, effective monitoring of vital signs and clinical status enables the timely detection of potential complications that require prompt intervention. Engaging parents or guardians in monitoring and providing their children with nursing care is a crucial, but often overlooked, approach that could potentially save lives. The potential to alleviate the workload of health workers and to improve patient outcomes are two main facilitators discussed by Kabajassi et al. in this edition of Acta Paediatrica. Their paper explores the facilitators for, and barriers to, a family-integrated care programme.1 This programme encourages parents, and mothers in particular, to be active members of their infants' healthcare team in a neonatal unit at a resource-limited hospital in Uganda. A multicentre study of the original programme, conducted in high-income neonatal intensive care units, showed many benefits. It enhanced the infants' weight gain, reduced parental stress and increased exclusive breastfeeding at discharge.2 A related feasibility study of the programme in Uganda showed that most mothers demonstrated proficiency in performing their assigned tasks after 2–4 days of training. The mothers also reported feeling better prepared for discharge after the intervention than at baseline.3 The ability of parents to perform monitoring tasks, and their increased feelings of empowerment, is in line with studies from the Kenyatta National Hospital in Nairobi, Kenya, where the Family Assisted Severe Febrile Illness Therapy (FASTER) tool was developed, to allow caregivers of children admitted with a severe febrile illness to participate in monitoring of their children.4, 5 Caregivers' assessment of the child's illness severity matched with the assessment by healthcare personals in most cases. However, the study was not designed to assess the potential impact of the family-assisted intervention on the final hospital outcomes of admitted children.4 It needs to be emphasised that family-assisted monitoring is not the same as family-centred care. While both are approaches used in health care that involve the family in the care process, they differ in their scope, focus and implementation. Family-assisted monitoring involves training families for specific monitoring tasks, and the primary focus is on the active participation of the family in the monitoring process to enhance the efficiency and responsiveness of care. Family-centred care is a more holistic approach that emphasises the importance of including family members in the decision-making process in all aspects of the patient's care by planning around the whole family, not just the individual child. It promotes partnerships between parents and healthcare professionals and the family's participation in care is just one key component. The other elements are respect and dignity, information sharing and family collaboration.6 Parents in low-income countries are often involved in the nursing practises of their sick children. This involvement is not a product of family-centred care, as it has been driven by poverty-related limitations. A systematic review of acute care hospitals in low-income and middle-income countries reported high levels of missed care in all key nursing task areas. It stated that nurses prioritised technical activities and missed more non-clinical activities.7 Another study reported that families often stepped in to provide essential nursing care for hospitalised relatives in low-income countries, including feeding, cleaning and administering medication.8 However, this caregiver role was typically informal, lacked support and training and put a care burden on families to fill the gaps in medical care. In contrast, family-centred care is more common in wealthier countries. This is more structured and focuses on providing emotional support, facilitating recovery and preparing patients for discharge, rather than simply compensating for staff shortages. There is a risk that family-centred care that arises from necessity, rather than choice, may be in direct conflict with the overarching philosophy of family centred care. Instead of strengthening the patient's family, it adds to their burden.9 In contrast to findings from high-income settings, Kabajassi et al.'s study identified information sharing from health workers to parents and guardians as one of the barriers to family-integrated care. This was perceived to potentially increase maternal stress.1 The authors' suggested explanation was that the standard practice was for health workers to not disclose medical details about sick babies to their mothers. The shift towards full disclosure may be a significant change. This highlights the importance of considering cultural norms, educational challenges and hierarchical systems when involving families in patient care. A systematic review of implementation barriers and facilitators to family-centred care in hospitals in low-income countries highlighted negative attitudes towards nurses. Some parents preferred to work with doctors, questioned nurses' skills and were unwilling to participate in decisions when asked to.10 Another study found that nurses and other health workers expressed concerns about involving families more extensively, fearing that it may lead to increased demands on their time or their actions being questioned.5 Kabajassi et al. stated that mothers may also feel that they are not regarded as equal members of their infants' care team, despite this being a fundamental principle of family-centred care.1 Negative attitudes from health workers towards guardians of admitted children are an obvious barrier to the integration of any family-assisted intervention. Another important aspect is the time needed to implement family-centred care. Healthcare workers may feel it is only useful if it takes significantly less time to train family members than to perform the monitoring tasks themselves. Kabajassi et al. employed their own research staff to train mothers in monitoring tasks.1 In the evaluation of the FASTER tool in Kenya, the caregivers received both video demonstrations and hands-on education from a study nurse.4 Training time may provide a major constraint in settings where nursing time is already limited, and alternative modes of training should be explored. Initiatives such as the one presented by Kabajassi et al., which aimed to establish evidence for family-centred strategies in resource-limited settings, are important. Increased involvement of families in patient care could contribute to tools to alleviate the repercussions of the projected shortage of 10 million health workers by 2030.This shortfall is expected to primarily affect low- and middle-income countries. There is currently no evidence of the impact on admission outcomes using family-assisted monitoring interventions in low-income countries. On the other hand, none of the studies carried out so far have reported any harm.10 The people affected by interventions need to be involved in their development if they are to be sustainable and context-appropriate. Future studies need to include perspectives from health workers, patients, guardians, health managers and the public to ensure cultural appropriateness. My conclusion is that there is a lack of clear data to confirm whether family-centred care can be used as a tool to reduce paediatric inpatient mortality and morbidity in resource-constrained settings. There is evidence to suggest that families who are provided with proper training and support can play a significant role in improving the quality and effectiveness of healthcare delivery. Asking families to assist with monitoring and nursing will enable healthcare institutions to use their limited resources more effectively to enhance patient outcomes and alleviate the effects of staffing shortages. However, the feasibility of involving families in patient care requires careful reflection and needs to consider factors such as cultural norms, educational levels and logistical challenges. Helena Hildenwall: Writing – original draft. None. The author has no conflicts of interest to declare.