The work of nurses to provide good and safe services to children receiving hospital-at-home: A qualitative interview study from the perspectives of hospital nurses and physicians

1.1 Background

Healthcare policies and practice in Western countries have increasingly emphasised the avoidance of hospitalisation to reduce capacity pressure on hospitals, and policymakers are seeking innovative strategies to achieve this goal (Gonçalves-Bradley et al., 2017; Spiers et al., 2012). As part of the Norwegian Coordination Reform, specific responsibilities and resources are progressively being devolved from specialist to municipal government (Meld. St. 47, 2008–2009; Ministry of Health and Care Services, 2017, p. 5). As a result, several hospital services have been transferred to primary health care, providing services closer to the patients’ homes. Thus, new tasks and assignments are transferred or delegated not merely from hospitals to municipal healthcare services but also from physicians to nurses. This entails a need for knowledge mobilisation, which also requires better collaboration within and across service levels and professions. In Norway and other countries, various hybrid forms of ambulatory services combining hospital and home treatment have emerged and are perceived as important in the provision of coordinated, tailored care (Meld. St. 47, 2008–2009; Ministry of Health and Care Services, 2017, p. 5; WHO, 2021).

Hospital-at-home (HAH) for children comprises healthcare services that ‘substitutes for acute hospital review and/or admission by providing clinical review, support, education and management of the acutely or chronically unwell child in their own home’ (Parab et al., 2013, p. 3). HAH may be either community-based, provided by hospital-based outreach services or offered as a collaboration between hospital and primary health care (Gonçalves-Bradley et al., 2017; Parker et al., 2013). In the UK, HAH usually involves the provision of personal, nurse-led care, building on the existing structure of homecare services (Gonçalves-Bradley et al., 2017). In other countries, such as the United States and Australia, hospital-based outreach services tend to dominate. In the literature, these services are referred to as ‘hospital-based home care’ services (Hansson et al., 2012), ‘home care services’ (Castor et al., 2017), ‘paediatric home care service’ (Parker et al., 2002), ‘early discharge hospital-at-home programmes’ (Gonçalves-Bradley et al., 2017) or ‘HAH’ (Aasen et al., 2018; Parab et al., 2013). In this study, we apply the concept of ‘HAH’, referring to treatment for children and adolescents with acute or chronic diseases.

International efficacy studies have shown that the quality of HAH for children is as good as, or better than, traditional hospital treatment (Cooper et al., 2006; Parab et al., 2013; Parker et al., 2013; Tiberg et al., 2012). Several qualitative interview studies have shown that children and their families are satisfied with HAH (Aasen et al., 2018; Hansson et al., 2012; Samuelson et al., 2015). Home treatment is reported as less stressful than traditional hospital treatment—even de-stressing and empowering—and that the family members’ quality of life is enhanced (Aasen et al., 2018; Cooper et al., 2006). Moreover, in a pilot study, we found that parents experienced HAH as implying a kind of normalisation of life, and therefore they perceived HAH as a beneficial service (Aasen et al., 2018). However, certain preconditions are important to parents’ experiences: their trust in the services was based on their perception that the professionals had the competence needed to care for their sick children at home. A UK study indicated that several difficulties existed in HAH for children at an organisational and practical level: capacity pressure is a recurrent theme in accounts of service delivery, primarily due to low staffing and insufficient competence amongst the professionals involved (Spiers et al., 2012). The significance of possessing solid skills is amplified in various studies, pointing out how challenging it is for nurses in primary health care without any paediatric training, education or experience to be a resource for the family (Castor et al., 2017; Samuelson et al., 2015; Spiers et al., 2012).

To our knowledge, there is limited research exploring hospital nurses’ and physicians’ perspectives on the clinical work performed and competence needed to provide good and safe services when hospital treatment of children is carried out in the family's home.

1.2 Expertise in nursing practice: A theoretical perspective

In this study, we draw on the theoretical perspective of Benner et al. (2009), who claim that becoming an expert nurse is a five-step process. While a novice practitioner's actions are guided by principles, rules and practical structures, such as schedules for taking vital signs, the expert practitioner is deeply involved in the situation and does not perceive a problem as separate from the whole situation. (Table 1).

The expert perceives a situation and responds in a fluid, automatic manner. At the expert stage, the understanding of a situation is intuitive, and the practice has become a part of the nurse herself (Benner et al., 2009). Benner and co-authors describe the practice of an expert nurse as engaged by practical reasoning, which relies on mature and practised understanding as well as a perceptual grasp of distinctions and commonalities.

Ambulatory services, such as HAH, are often nurse-led services. Nurses are the largest group of healthcare professionals; they are at the forefront of patient care and play a key role in care and patient outcomes (Bressler & Persico, 2016). Knowledge is scarce about how changes in service delivery and transition of care tasks influence nurses’ clinical work at a practical level and how nurses in different healthcare organisations work and collaborate in clinical work (Dougherty & Larson, 2010; Lemetti et al., 2015). The perspective of Benner et al. (2009) on ‘expertise in nursing practice’ and ‘the expert nurse’ may offer a useful approach to understand the work of HAH nurses to provide good and safe services to children who receive HAH.

1.3 Aim

The aim of this study was to explore and describe the work performed by the nurses in HAH services to children and their families from the perspectives of hospital nurses and physicians.

2.1 Design and study context

A qualitative interview method with a descriptive design was used in this study, aiming to explore and describe the experiences as expressed by the participants themselves (Malterud, 2012). In preparing the manuscript, we applied the guidelines for the Consolidated Criteria for Reporting Qualitative Research (COREQ checklist) (Tong et al., 2007) (Supplementary File 1).

The context of the study was HAH services established at two large hospitals situated in eastern Norway. These HAH services, established in 2008 and 2016, respectively, were offered to children from the neonatal stage up to 18 years with a variety of diagnoses. The most common treatments were intravenous antibiotics, intravenous nutrition, tube feeding, change of dressings and follow-up of children with newly diagnosed diabetes, infections and cancer. The children needed to be in a stable phase of their illness, that is they had to be respiratory and circulatory stable. Children who were offered HAH were transferred from the paediatric ward to their own home, which implied they were still hospitalised when receiving the service. Physicians at the hospital's paediatric wards admitted the child. HAH was voluntary, and the parents could return to the hospital with their child at any time. The distance to the hospital could not be more than a one-hour drive by car. The HAH nurse had the flexibility to adjust home visits to meet individual needs for counselling and monitoring of treatment based on the progression of the illness. One hospital offered a 24-h service, whilst the other was open from 7:00 to 23:00. If assistance was needed after hours, families might call the paediatric ward at the hospital. A primary nursing arrangement (Bowers, 1989) was practised in the HAH services, which meant that only a few different hospital nurses visited the children during the whole treatment period. Most often only one nurse, either an assistant or registered nurse, visited the child at home, over a period of a few days or up to two weeks. Each visit usually lasted for 20 min. Sometimes the arrangement lasted for several months. HAH was primarily a nursing service, but the paediatrician might also make home visits when considered necessary and held the main responsibility for the HAH treatment of the children.

2.2 Data collection and material

We conducted individual interviews to capture hospital nurses’ and physicians’ perspectives on the work and collaboration in HAH, focussing on the role of the HAH nurses when children received hospital treatment at home. Participants were recruited with assistance from the head nurses of the HAH services at the two hospitals. We used a purposive sampling strategy, including 16 nurses and physicians working in the HAH services, representing different ages, genders and lengths of experience (see Table 2). Three of the participants were physicians and 13 were nurses, two were assistant nurses and 11 were registered nurses. No one refused to participate or dropped out of the study. Throughout the manuscript, we use the concepts physicians or (HAH) nurses when referring to the interviewed groups working in HAH. We also use the concepts hospital professionals or participants when referring to all the interviewed.

The first author conducted the interviews between January and May 2020. The interviews were carried out in the paediatric hospital wards hosting the HAH facilities and lasted approximately one hour. The participants were asked about their work and collaboration experience and about their perceptions of the competences needed and the conditions facilitating or hampering the quality of healthcare services in HAH. In specific, we asked about how the nurses worked when visiting children and parents at home. The interviews were open-ended, semi-structured, and based on an interview guide, accompanied by follow-up questions specifically adapted to each interview. We asked questions such as ‘Can you tell me about an ordinary home visit to a child, from the moment you entered the home until you left?’ We also asked about how the hospital physicians were involved and collaborated with the HAH nurses when children received treatment at home. As the nurses were the ones who primarily performed home visits, the physicians were asked about their experiences of the work of the nurses in HAH, how they collaborated and their perspective on what characterised high quality services and safety when children were treated outside hospital. All participants were encouraged to express their personal experiences as nurses and physicians when answering the questions. The interviews were digitally recorded and subsequently transcribed verbatim by the first author. To maintain a high degree of confidentiality, only the interviewer (first author) listened to the recordings afterwards, and the co-authors read the transcripts.

2.3 Data analysis

Transcripts of the audiotaped interviews constituted the data for this study and were analysed using systematic text condensation, a cross-case method for thematic analysis (Malterud, 2012). The procedure consists of the following four steps developed by Malterud: (a) total impression—from chaos to themes; (b) identifying and sorting meaning units—from themes to codes; (c) condensation—from code to meaning; and (d) synthesising—from condensation to descriptions and concepts. The first step involved reading all the data to identify preliminary themes and thus obtain an overall impression of the participants’ experience from work and collaboration in HAH. In the second step, meaning units were identified, classified and sorted, representing different aspects of participants’ perspectives on the nurses’ daily work in HAH and how the nurses and physicians collaborated within and across service levels. The meaning units were coded from preliminary themes into different thematic code groups. In the coding, the focus was on how the HAH nurses approached the children and their families and how they collaborated with the nurses and physicians within the paediatric hospital ward and in some cases also homecare nurses to provide services to the patient group. In the third step, subgroups were established, exemplifying vital aspects of each code group across participants, condensing the content and selecting quotations that appropriately illustrated the essence of the descriptions. Finally, the condensates were synthesised to form a generalised description that reflected the main findings regarding the work in the HAH and constituted three categories with subgroups. The discussion of the results was supported by the perspective of Benner et al. (2009) to approach the competence of expertise in nursing practice.

All the authors routinely met during the analysis process to discuss preliminary themes and the coding of the empirical data (Table 3).

2.4 Ethics

This study followed the Declaration of Helsinki on ethical principles for medical research involving human subjects. The study was approved by the national IRB (NSD-723356) and the two hospitals’ institutional IRBs (ref. 2019_134, 19/29832). The participants received written information about the study, and their written informed consent was obtained before data collection. They were informed that participation was voluntary, that the collected data would be kept confidential and that they had the opportunity to withdraw from the study at any time. Quotations used in this paper are assigned a number for each of the interviewed participants.

3.1 Building a trustful relationship with the family and the sick child

Both nurses and physicians were concerned about how chronic or serious disease in children affected the whole family, not least the siblings. The HAH nurses highlighted the importance of observing and following up on the siblings during home visits to be able to recognise their needs for information or support to manage the situation. The nurses also described how they related to siblings during home visits; they made sure to say ‘hello’ and show interest in talking with the siblings, too, aiming to establish a relationship with them.

3.2 Performing essential skills in paediatric nursing care in HAH

Often, the HAH nurses played with the child as a preparation for conducting medical procedures. For instance, they joined the child on the trampoline or swing or whilst eating, watching TV, or playing on a computer tablet. This illustrated how the nurses carried out home visits on the children's own premises, ‘avoiding negative experiences of coercion’, as some expressed it. Furthermore, they found that involving children in medical procedures seemed to help them calm down and feel safe and in control of the situation. Mostly, children enjoyed assisting the nurse. Some of the HAH nurses highlighted how they involved the child in decisions by letting them choose the order in which medical procedures should be carried out. For instance, one said she would ask whether the child wanted to help by ‘holding the sample glasses with blood or flushing the line with saline’. Another nurse pointed out that she was carefully aware of not doing anything that would bring her beyond the children's bodily or emotional boundaries. Rather, she waited for the child to prepare, and a trustful relationship was established so they could closely collaborate in accomplishing the medical procedure.

3.3 The HAH nurses as the ‘hub’ between the different parties

According to the participants, the HAH nurses became the natural coordinating and collaborating ‘hub’ linking family, hospital colleagues and homecare nurses during home treatment of the children. The nurses were those knowing the sick child, the family and the homecare nurses in addition to having close ties to the hospital.

Several of the physicians and nurses underlined the importance of obtaining an impression of the parents’ capacity and ability to manage the situation when hospitalised children receive treatment at home. The HAH nurses made an effort to adjust their supervision according to the parents’ needs and capacity, since different parents react differently and may have varying resources to relate to the situation of having a sick child. Some parents did not hesitate when it came to conducting procedures such as changing dressings on a CVL, whilst others did not want to deal with procedures at all. In the interviews, some of the nurses and physicians reflected on dilemmas concerning the responsibility and workload put upon the parents. Thus, it was important to the HAH nurses to demonstrate to the parents that the hospital had the main responsibility for the child's treatment and to relieve the parents’ sense of responsibility. The nurses also encouraged the parents to share their worries or anxiety with them during visits.

The HAH nurses stressed the importance of avoiding exposing the child to traumatic experiences and risking destruction of the trustful relationship and alliance established with the child and the parents. Knowing that some painful procedures could be carried out in hospital and not during the home visit was important to the HAH nurses in their clinical practice.

Several of the interviewed nurses pointed out that HAH for children also implied much coordination work in relation to the hospital and in supervision of nurses in the homecare services. If the children needed home visits beyond the capacity of what the HAH nurses could offer, nurses in homecare services played a significant role, by filling in and conducting the extra visits. For instance, when a child needed intravenous antibiotics three times a day, the hospital nurses came in the morning whilst the homecare nurses administered the other visits. The HAH nurses sometimes noticed that the homecare nurses were afraid of making any mistakes, particularly since they were not trained in paediatric treatment of children. The nurses from the two different service levels often met in the patient's home to complete procedural training such as use of intravenous pumps to safeguard children and their parents. The HAH nurses sometimes described the supervision of homecare nurses as challenging. A central challenge was related to low continuity of care amongst the nurses in home care, making it hard to reach all nurses involved.

4.1 Establishing a trustful relationship and safe alliance—the key in clinical nursing practice in HAH

We are not the first to demonstrate the importance of the relationship in patient care and treatment, which also includes relating to the family caregivers (Aasbø et al., 2019; Doane & Varcoe, 2007; Herder-van der Eerden et al., 2017; Sekse et al., 2018; Sims-Gould & Martin-Matthews, 2010; Zotterman et al., 2015). Several studies from different healthcare settings show that parents of children who have received HAH emphasise a trustful and emotional relationship, not least to be empowered and supported to manage the situation at home (Aasen et al., 2018; Bruce & Sundin, 2012; Korhonen & Kangasniemi, 2013; Lowes et al., 2004; Nuutila & Salanterä, 2006; Pelentsov et al., 2016). Some studies report that parents and children experience a trustful relationship as a feeling of having a close personal relationship, sometimes reminiscent of a friendship (Castor et al., 2018; Hansson et al., 2012; Samuelson et al., 2015; Spiers et al., 2011).

This study indicates that the HAH nurses’ careful and sensitive attitude towards sick children and their families was important for achieving a trustful relationship that also formed the basis for good collaboration for practical nursing care in the home. Castor et al. (2017) found that the alliance between the family and the health professionals had a fragile nature, and that shared decision-making and partnership seemed to have key roles in strengthening family life and health. Factors such as listening, respect, building trust, empathy, and providing practical and social support have been pointed to as constituting the core elements of a trustful relationship and have been described specifically as alliance-building (Dunne & Parker, 2020; Sims-Gould & Martin-Matthews, 2010; Zotterman et al., 2015).

The relational approach we found as important seems to have good preconditions in a service where only a few nurses visited the same child during the whole treatment period. The primary nurse arrangement implies continuity of care and was considered as an imperative for the service quality, since the HAH nurses knew the children and the families they visited and their needs and concerns. Our results indicate that the nurses explicated their capacity to perform the procedures on the child's terms, whilst at the same time multitasking by interacting and playing, giving the child control and making him/her feel safe. The nurses continuously observed the child's condition and were firm yet kind and fast when handling procedures. Benner et al. (2009) state that well-developed embodied skills are needed to be able to perform skilfully under time pressure.

The increased focus in nursing education and clinical practice in Western countries on using clinical guidelines and care protocols to direct care has given rise to concerns over the value afforded to what is truly ‘expert practice’ (Christensen & Hewitt-Taylor, 2006). Several studies have shown how the relational approach of nursing is challenged when care is limited to standardised procedures, corresponding to medical treatments of disease processes or preventative measures (Doane & Varcoe, 2007; Sims-Gould & Martin-Matthews, 2010). According to Benner et al. (2009), an expert nurse will not reject guidelines or protocols, but these are only a part of what informs their decision-making. Central to expert practice is a concern for revealing and responding to patients as persons, respecting their dignity, protecting them in their vulnerability, helping them to feel safe and preserving the integrity of close relationships (Benner et al., 2009). An expert in clinical nursing manages to reflect during task performance and think in action, and this is lodged in the body, the hands and eyes and practised habitual responses to situations. This is also illustrated in our findings through the way the HAH nurses related to the patients and their families, aiming to establish a trustful relationship and alliance as a good basis for delivering paediatric care in HAH.

Our results add to existing research emphasising the importance of establishing a good working alliance with the sick child and the child's parents during home visits as a precondition for carrying out good and safe paediatric nursing. The present study adds to the literature across the breadth of research on nursing specialties and different clinical settings that have applied the concepts of Benner et al. (2009) on ‘expert nursing’ and ‘expertise in clinical nursing’.

4.2 The HAH nurses’ role as a hub

Our results also demonstrate how HAH nurses became natural coordinators and collaborator hubs between family, hospital colleagues and homecare nurses during children's home treatment. According to Hillis et al. (2016), parents who have children with complex care needs, value having a nurse-coordinator since this implies that someone has the complete overview of the situation. We found that the role of the HAH nurses as a collaborator hub was important for the physicians as well. The nurses held the medical overview delegated on a daily basis from them. This implied that the HAH nurses carefully observed the child and the family and were thinking and acting on that basis, as Benner et al. (2009) argue. Thus, our findings suggest how the HAH nurses’ role as coordinator or collaborator hub is important for good and safe services. Various studies on HAH services to children confirm the importance of close collaboration between hospital and primary healthcare services (Castor et al., 2017; Samuelson et al., 2015; Stevens et al., 2004).

This kind of organisational work with nurses performing as a hub in healthcare suggests a largely invisible system operating under the radar of formal organisational structures (Allen, 2019). Still, this work needs to be done by highly skilled nurses and is essential for service delivery with good quality. The perspective of Benner et al. (2009) offers insight into the complexity of the competences held and the work performed by the HAH nurses during home visits. Thus, our study adds to the existing research by describing the complexity of the role and the responsibility of nurses in ambulatory services to hospitalised children treated in the family's home.

4.3 Transition of tasks and responsibilities from hospital to home—implications for patient safety

Within the context of ambulatory services, the HAH nurses and the children's parents as informal caregivers shared tasks and responsibilities on a daily basis, although the main responsibility falls to the hospital. Our results demonstrate that this transition from hospital to home has implications for the work of hospital professionals, particularly nurses and may also indicate the need for specific arrangements to ensure patient safety. Studies from primary care contexts have shown that nurses acting as links between different professionals and levels of health care, and between patient and family caregivers, contribute to ensuring the quality of care to the individual patient (Melby et al., 2018; Sekse et al., 2018; Zotterman et al., 2015).

Our study indicates that a good working alliance enabled by continuity in care and the hub function held by the HAH nurses might contribute to enhancing patient safety because this organisation of services enabled the nurses to reveal signs or patterns of deterioration in patients at an early stage, as characterised by ‘the expert nurse’ of Benner et al. (2009).

A study of general practitioners and task-shifting concluded that patient safety is at risk when transfers take place without a systematic process being in place where all parties involved examine available resources (Malterud et al., 2020). Such a case would imply having competent nurses possessing necessary paediatric competences and also sufficient time, medical equipment and easy access to the hospital, that is, both advice and beds are available if children need hospital admission.

A mutually respectful and collaborative environment between the involved parties is essential to ensure a safe, complete and coordinated system. An example would be establishing sound learning arenas where HAH nurses and homecare nurses could share important experiences and train in or refine practical skills for delivering safe and proper HAH services. Hence, it is important to equip staff and health service users with the necessary expert knowledge, skills and attitudes to make care safer, since standards of care regularly evolve (Meld. St. 47, 2008–2009, p. 5; WHO, 2021).

4.4 Limitations of study

This study explores and describes from the perspectives of HAH nurses and physicians the work performed by the nurses when children receive treatment in the family's home.

Interviewing homecare nurses cooperating with HAH and parents of the children might have provided a broader picture of this topic. The HAH service to children is primarily a nursing service. The experiences of physicians came forward in a much smaller scale than for the nurses. One reason for this is the limited number of physicians employed in HAH compared to nurses. Additionally, the physicians elaborated somewhat more on the nurse's work than on their own, which may be due to the interview guide, and the aim of the study—but also the fact that they are not in the homes of these children on a daily basis. While the three interviewed physicians were all paediatricians, the nursing group in HAH consisted mainly of registered nurses, some with additional nursing education. Only two of the participants were assistant nurses. Registered nurses and assistant nurses had somewhat different tasks and responsibilities in HAH services, that is, registered nurses took care of medical procedures such as handling medications, whilst assistant nurses guided parents in gastric tube feeding and breastfeeding of premature children. Nevertheless, there were no clear or specific differences between them regarding how they approached the family and children and their perspectives on working in HAH services.

The first author is an intensive care nurse with extensive work experience with children and a bachelor's education in nursing but with no work experience within the HAH service. This may, however, still have influenced how she emphasised and followed certain themes in the interviews and conversations. She counteracted this by consecutively discussing the interviews and the analysis with the co-authors who have different academic backgrounds. Additionally, the first and second author have previously published a pilot study on parents’ perceptions of HAH, and this might have coloured the analysis and the research process. However, the first author discussed preliminary findings with nurses working in HAH services to check whether the interpretations developed during and after the analysis were in accordance with the nurses’ understandings of the situation.

In the discussion of the results was applied the perspective of Benner et al. (2009). Their theory is criticised for its presentation of the expert stage of nursing, implying that the nature of expert nursing requires further analysis (Cash, 1995; English, 1993; Paley, 1996). Nevertheless, their theoretical concepts of ‘expert nursing’ enabled us to explore and describe the complexity and importance of the competence held in the work performed by HAH nurses in home visits to children and their families.