Facilitators to follow-up care after discharge.

The three main facilitators to follow-up care after discharge were telephone/short message service (SMS) text reminders, a positive nurse-caregiver/patient relationship, and the complementary aspects of the Smart Discharges Program. Follow up care after discharge was defined as applying the discharge care instructions as applicable to their child and attendance at post-discharge follow up visits.

The caregivers were appreciative of and motivated by SMS referral reminders and follow-up phone calls after their discharge. These SMS messages served as a reminder for and provided encouragement to attend the post-discharge follow up at community level facilities.

“I finished all the visits because the organization kept on reminding me [via SMS] to take the child to hospital for checkup. This organization of Smart Discharge, they could call me every Tuesday reminding me. [This is] something that encouraged me so I finished all the routines of taking the child to the hospital for checkup” (MaleCaregiver24).

Nurses reported having more success providing discharge education with caregivers when they had built a positive nursing relationship with the patient and caregiver.

“Because it begins with trying to create rapport…and much as the children have come with different infections, when you create that professional relationship they open up… They open up easily and the work becomes easier” (Nurse3).

Additionally, having a strong nurse-caregiver relationship helped to support better care-seeking behavior after discharge. One nurse shared,

“Even after going home, the caregivers keep calling us and telling us how their children are doing and the health centers they have visited. The caregivers now have a positive attitude towards healthcare-seeking than before” (Nurse1).

Caregivers who were a part of Smart Discharges reported feeling valued and cared for both during the discharge phase of hospitalization as well as after discharge.

Each component of the program, including risk assessment, educational materials, counselling, and post-discharge referral, were described as complementary, and that they “…work hand in hand” (Nurse7). A nurse explained, “[the Smart Discharges Program components] are all complementing each other…they are all supporting one another and none of them can work in isolation” (Nurse4).

Barriers to follow up care after discharge.

The key barriers to follow-up care were lack of resources, discharges against medical advice, and experiences with untrained/unfriendly healthcare workers. Lack of resources, which included inadequate financial resources, transportation challenges, and lack of family support, was a prominent barrier to attending follow-up care. Caregivers’ financial constraints were described as impeding follow up visit attendance, adequate nutritional support of recovering children, and purchasing of necessary medication and supplies. One nurse shared,

“The high risk patients…When we tell them to go to the nearest health centres some of them are not sure they will have money to do all the three visits…Sometimes they don’t mention this at discharge, but after they have gone home and when we call them they say they did not go for follow up because they did not have money” (Nurse7).

A caregiver explains this further, “That day reaches when we don’t even have the money for transport. Even my husband fails to provide money, so you say ‘I will not go that day’” (FemaleCaregiver10). The nurses highlighted the need to balance the financial demands of having a sick child when there are other children to support at home. It was emphasized that caregivers were doing the best they could with the resources that they have. As another nurse described, “The issue of poverty is also a big problem. The caregivers are seemingly appreciating the information being given, but them practicing what is being preached to them is a challenge” (Nurse1).

Financial constraints also contributed to patients and caregivers being discharged against medical advice. When patients and family leave before it is medically advisable to do so, they miss the opportunity to receive adequate discharge counselling or to receive their follow up appointments. A nurse explained,

“Some mothers are admitted when they don’t have money to buy food and sometimes they have to buy the drugs as well. So, some will be willing to stay in hospital, but they are worried about what the child will eat. They also see no reason of staying in hospital because they don’t have money to buy the prescribed medicine. So even though we take time to convince the mother to stay, she will eventually go [home against medical advice]” (Nurse8).

Negative encounters with healthcare workers at the community health facilities was a barrier identified by nurses as well as caregivers who had attended follow up appointments. These encounters were reported to be negative because not all healthcare workers had received training on the “downward referral” process and, therefore, did not know the process for assessing the children. As a result, healthcare workers were often unfriendly towards patients and caregivers who were reporting for a follow-up assessment. A nurse explained, “There is a challenge of caregivers who take their children to nearby referral health centres. They face backlashes from health workers there who bash them for taking children to health facilities when they are not sick” (Nurse1). This was also validated by the caregivers’ perspectives, “When they were discharging us they told us to take our child to the nearest hospital every week, but when I went there, they shouted at me asking me why am bringing my child to the hospital, yet he is not sick?” (MaleCaregiver23). When caregivers had an initial negative experience at a community health facility when seeking follow up care, this often impacted future care seeking and the desire to attend subsequent visits.

Relevancy and timing of counselling/education.

Receptivity of caregivers to discharge education was improved by its perceived relevance and the caregiver’s ability to engage with the materials. As a caregiver explained,

“This discharge was different from the rest because when you take a child to hospital they tell you that the child has malaria; they bill you, give you medicines and ask you to leave. But during this discharge I was told that the child had malaria and the health workers taught me how to prevent malaria; how to take care of the child so that she does not suffer from malaria again and how it affects the child if she continues getting malaria attacks. They also taught me what do at home” (FemaleCaregiver2).

The education was directly related with how to care for their vulnerable child and relevant to returning home after discharge.

“What we do is that we let them know that a time will come and they will be discharged from hospital and what they need to hold as key is that a patient discharged from hospital is not necessarily completely healed but still on the road to recovery” (Nurse3).

The importance of caregivers receiving education and understanding how it applies to improving outcomes for their children was validated, “At least if each health worker would talk to a mother and disseminate information regarding the condition of the baby and how to go about it, I am sure this can reduce on the mortalities in their homes” (Nurse 6). Another key element to receptivity was caregiver engagement with the educational materials and how the educational messages were conveyed. For example,

“The [caregivers] are interested in [the educational materials] because it has pictorial illustrations…which caregivers gleefully find illustrative of what they are required to do. For instance, going to hospital, what to feed on, the need for the husband to escort the wife to hospital. At least that one they find it exciting” (Nurse5).

Including pictures that illustrated the discharge instructions was engaging, and was also a tool to overcome literacy barriers. The timing of education was also found to be important. As a nurse explained,

“They don’t know if the child is even getting better, so they tend to be nervous. So, what I do is to find the convenient time when the patient is a bit stable. When there are not many attendants around them, when they are not on phone communicating with their people back home. When they are calm and stable. So, I approach them and talk to them about malaria, what brings about malaria, how it can be prevented at home, and this differs from one child to another depending on how it is presented” (Nurse3).

By ensuring the caregiver is both physically and mentally in a space where they can learn, they are more able to retain the information.

Increased caregiver knowledge.

The majority of caregivers shared that at least portions of the education they received from Smart Discharges Program was new information to them. Nurses reported caregivers learning about how to identify danger signs and the critical timing to seek care for their children.

“Caregivers are at home but they don’t know about these danger signs. When we talk to them about these, they appreciate and promise to always take their children to nearby health centres as soon as these danger signs manifest so as to get first aid” (Nurse7).

One father explained a behavior change he observed in his wife,

“It wasn’t me they found in the hospital. It was my wife and she learnt many things because I saw her changing. She used not to respond quickly in case of any illness but now she rushes to the hospital at a time she sees a sign of illness” (MaleCaregiver29).

Many nurses and caregivers spoke about how nutritional education was applied following discharge.

“There are some mothers who come with children in hospital. The child is one-year-old but he/she is only feeding on breast milk… there is now some change. Some have been coming here… in our follow up unit… And you find that the child has completely changed in terms of weight addition and generally they look healthy. We attribute this to the information we give them. Because we have been emphasizing to them that the child needs to be introduced to other feeds at 6 months of age, so we feel they have embraced this message. We have also reduced post-discharge mortality and reinfection because of our continued teachings about feeding children on a balanced diet which improves their immune systems to fight against infections” (Nurse1).

Caregivers also explained that the same principles that were learned through Smart Discharges were applied to the families’ other children. Examples included, feeding all of their children nutritious food and improved care-seeking behaviours when any child in the family fell sick.

A male caregiver shared his experience,

“All the things about nutrition, am applying them to my other children and they look healthy. For example, I have chicken, I have fruits like paw-paws [papaya], now I give them, I used to sell all of them and use money to drink. Now I repented” (MaleCaregiver25).

Increased involvement of male caregivers.

The programs impact on male involvement in their child’s care was seen most prominently through changes in the father’s engagement in care, provision of resources for care, and in changes in health-related communication both within the family and with the healthcare system.

Engagement in care.

Nurses saw benefits when education/counselling was done with the child’s father present.

“Some mothers are worried that although they are bound to stay in hospital, it is the husband who should have the final say on this. So in such a situation what I do, I go and give health education to the mother in the presence of the husband and during the session I emphasize the importance of staying in hospital and the husband’s responsibility. I encourage the husband to financially support the mother for the duration of her stay in hospital and in the end both parties agree to stay in hospital” (Nurse8).

This example highlights how the Smart Discharges education increased male caregivers’ engagement at the facility level. Several caregivers shared examples of how their husbands’ engagement in their children’s care also increased at home.

“My husband used not to even give us [money for] transport to the hospital when I used to ask him for it…but since I joined [Smart Discharges] my husband is active. We always come with him to the hospital. He buys food and other responsibilities” (FemaleCaregiver19).

Furthermore, receiving discharge education has given fathers a means to improve their relationships with their children. “It has helped me in increasing my relationship with my child, because what I read on the [Smart Discharges] card. I buy for her some food like an egg. She becomes so happy” (MaleCaregiver29).

Provision of resources.

Participants reported that fathers demonstrated an improved understanding of the needs of the child and the primary caregiver. This awareness in turn resulted in increased provision of resources for the child and primary caregivers. One caregiver explained,

“At the time of discharge, it was not me with the child, it was my husband that was there with the child. He learnt how to care for the child. Since then, when I tell him that I want this for the child, he immediately gives it to me because he does not want to go back to the situation that we were in of spending money in the hospital. Every time I tell him that at least the child has to eat eggs twice a week. He makes sure that he buys the eggs” (FemaleCaregiver21).

Other caregivers shared similar sentiments and acknowledged that after their husbands received discharge education, they bought foods to follow nutritional guidance and purchased the medications prescribed to their children. Male caregivers were more open to providing transportation support for their children to attend follow up appointments or to return to the hospital when the child was sick again. One male caregiver explained, “When I reached home I made sure that I buy everything he needs [and] take him to the hospital for checkups until he is totally healed” (MaleCaregiver27).

Improved communication among caretakers.

Participation in the program fostered discussions between fathers and mothers about their child’s wellbeing and how to support their vulnerable child. Often the father’s cell phone number was provided to receive follow-up reminders, invoking the father to play an important role in communication with the mother.

“Smart Discharge has helped me, in getting involved in the care of my child because whenever I get a call from Smart Discharge, I go and tell my wife that we have to go back to the hospital so that we can learn on how to take care of our child. Therefore, this increases on my relationship with my wife and the child” (MaleCaregiver28).

Additionally, improved communication between the healthcare system and male caregivers helped them to better understand why their child was hospitalized and to follow discharge instructions.

“They are different because previously, they used to just pack for us pills without explaining so much on what you should do. But when we joined Smart Discharge, things changed because before discharging us they first talk to us” (MaleCaregiver26).