This article discusses the care of children and young people living with technology dependence in the context of children's nursing practice.
Background
Owing to increased medical knowledge and capabilities, more children and young people are living with chronic conditions or long-term complications of treatment. And many are dependent on technology (Wang and Barnard, 2004; Kirk et al, 2005; Toly et al, 2017). Although many children and young people may rely on one technology to sustain life, others have several technological devices to monitor their condition (Heaton et al, 2005). In the literature, children and young people who rely on technology for medical purposes are referred to by a myriad of different terms (Spratling, 2014).
Definition
The prevailing definition of technology dependence is that of the US Congress Office of Technology Assessment (1987), which defined technology dependence as having:
‘A medical device to compensate for the loss of a vital bodily function and substantial and ongoing nursing care to avert death or further disability.’
US Congress Office of Technology Assessment, 1987
Thus children or young people with technology dependence include those requiring ventilation assistance, haemodialysis, peritoneal dialysis, enteral feeding or oxygen (Wang and Barnard, 2004; Mesman et al, 2013).
Impact on the child or young person
The impact of technology dependence for children and young people is multifaceted and far-reaching. This ranges from technical considerations such as restrictions on activities and attending multiple appointments to social isolation, lack of consistent education, and lack of privacy or independence, as well as the psychological and emotional burden (Mesman et al, 2013). One such burden is worrying about the impact their needs have on parents or worrying about the future impact of their death (Carnevale et al, 2006; Mesman et al, 2013). Children face social and educational exclusion, as well as societal devaluing of their life (Carnevale et al, 2006). Looman et al (2018) looked at the health-related quality of life for children with medically complex conditions and found that children and young people who are technology dependent, on average, have a lower quality of life score. Technology dependence was also shown to have more of a significant impact than comorbidity or multimorbidity. That said, these results were based on parental proxy reports of the child or young person's quality of life, which has been proven to be problematic (Varni et al, 2007).
Family impact
Technology dependence can profoundly alter the way a family lives (Cockett, 2012; Toly et al, 2017). This is multifactorial, as having a technology-dependent child can shift parents' understanding of what it means to be a parent to being a multiple role of parent, nurse, advocate and case manager and can also change their perception of their home (Kirk et al, 2005; Carnevale et al, 2006). Depending on the needs of the child, there may be a plethora of medical technology within the home, which can both medicalise the environment and impinge on play or the functionality of the living space (Wang and Barnard, 2004; Kirk et al, 2005; Toly et al, 2017). As well as the presence of technological machinery, there may also be a number of people regularly within the home, such as nurses and carers, equipment delivery people and technicians, which encroaches on a family's privacy, again changing the environment and concept of home (Heaton et al, 2005; Kirk et al, 2005; Mendes, 2013).
As well as the physical or practical changes, some parents identify a psychological or temporal burden while caring for their technology-dependent child. This begins with the stressful and overwhelming introductory period to living with increased stress, the continual need for vigilance and the risk of death. Parents struggled with having no choice about being a carer, while continuing to strive for stability and normalisation (Heaton et al, 2005; Carnevale et al, 2006; Mendes, 2013). Heaton et al (2005) discussed the changes in the household routine or rhythm as it adapted around the needs of the technology, such as battery life or feed changes, for example. Many parents discussed this change in rhythm as regularly disturbing their sleep (Wang and Barnard, 2004; Heaton et al, 2005). Often the mother will take up the primary caregiver role and is likely to stop working professionally in order to care full time (Okido et al, 2015). This will depend on the level of social support the family has around them (Wang and Barnard, 2004).
Toly et al (2017) estimated that 75% of children who are technology dependent also have a well sibling. Well siblings are affected when they have a technology-dependent sibling; the extent of this impact can vary but often includes an effect on the relationship with parents, the home environment, socialising and opportunities (Toly et al, 2017). Potential for reduced socialisation leading to isolation is also identified in other studies, affecting not only the well siblings but also the immediate family as a whole due to the care needs of the child (Heaton et al, 2005; Carnevale et al, 2006; Okido et al, 2015). However, it is also important to note that many well siblings have a close bond with their technology-dependent sibling or have adapted in a positive way (Toly et al, 2017).
Normalisation
Caring for a child who is technology dependent at home is often referred to as burdensome and stressful. However, Wang and Barnard (2004) highlight a shift of focus when a child moves from hospital to home. When such a child is in hospital parents can have a sense of futility that their child is not improving to the extent that they will no longer need the technology, and the child's condition is the sole focus of attention. The transition to home requires families to focus on circumstances apart from the child's condition to everyday functionality, allowing social and emotional development through involvement in family life. Lives can be enriched and enhanced by having the technology-dependent child at home (Wang and Barnard, 2004; Carnevale et al, 2006) and careful, gradual management of the transition to home can be a positive experience (Brenner et al, 2015). Establishing normalisation can require a substantial amendment to what is considered ‘normal’ (Carnevale et al, 2006). New routines, perceptions of values and physical changes form a newly adjusted concept of normality.
Toly et al (2012) explored the adaptation of families to caring for a technology-dependent child and found that having a stable family base led to more success, with normalisation and positive family adaptation leading to less maternal stress and depression. Conversely, a less stable base led to poor adaptation, fewer attempts at normalisation and higher maternal stress and depression. Looman et al (2018) also found that lower scores in a child's health-related quality of life correlated with lower physical, social and cognitive functioning of parents. This is not surprising when viewed in light of resilience theories (Masten et al, 1990), where the ability of an individual to positively adapt at times of stress is based on an equipoise of protective and risk factors.
Expert parents
Owing to a culture shift in health care, more children and young people who are technology dependent are being cared for in their homes by parents or carers, and this has led to parents becoming the experts in their child's, often medically complex, care (Wang and Barnard, 2004; Kirk et al, 2005; Mendes, 2013). Not only does technical or practical competence develop for parents or carers, they are also required to develop their clinical decision-making skills and an experiential knowledge, which may then be undervalued by medical professionals (Kirk et al, 2005).
While exploring the parental experience of caring for a technology-dependent child at home, Kirk et al (2005) found that parents assumed nurses had a ‘caring disconnect’ about the child and care provision. Parents described feelings of guilt and anguish when providing lifesaving treatment that they knew caused their child distress but, further to this, commented that nurses providing the same care would be able to do so without the related anguish and guilt due to the child being a client. Nurses should consider how they can demonstrate to parents that they do have caring feelings for each child, while maintaining their professional boundaries.
The role of the nurse
The role of the nurse will vary due to the setting in which they are caring. The role is important because the early experiences of children and families with healthcare teams can have a lasting impact on their perceptions of care (Mendes, 2013).
In caring for children or young people at home, Mendes (2013) found parents value nurses with a range of clinical, cognitive, professional and positive interpersonal skills, as well as the unspoken acknowledgement that the parent has overall control of the care. This combination of expert parent knowledge and the need for nurses to provide evidence-based practice has potential for tension in the planning of care at home for the technology-dependent child. Wang and Barnard (2004) recognised this potential for tension in all areas of health decision making for children and young people who are technology dependent due to the innate power imbalance between health professional and parent, juxtaposed with the parent's role and responsibilities when caring for the child at home. Furthermore, Giambra et al (2014) alluded to the care of the child being negatively impacted when parents of technology-dependent children are not fully involved in care planning if the child is hospitalised.
Giambra et al (2014) outlined a model for successful shared communication between expert parents and nurses that includes mutual respect for each other's roles and expertise, active questioning and listening, advocating, explaining and checking understanding. While they used this for parents of technology-dependent children, it reflects the values of all family-centred care.
Implications for practice
Nurses either in hospital or community practice may encounter children and young people who are dependent on technology and have the potential to make a positive difference. One of the most frequently cited impacts on parents, siblings and children was that of isolation and the infringement of normal activities. Although it is acknowledged that specialist service provision may not have kept pace with the growth of community-based care (Sobotka et al, 2019), nursing teams should be able to provide information on and help to access local activity groups and support services for children with additional medical needs or who are technology dependent. This may also include an awareness of local respite services.
Nurses can empower families to seek respite or have regular carers to create time for parents to look after themselves, support the activities of well children and maintain social support networks. A study in Illinois, USA, found that only 53% of families had been able to access all of the respite care they needed (Sobotka et al, 2019). It is known that caring for a child who is technology dependent has a profound impact on parents and carers (Heaton et al, 2005; Carnevale et al, 2006; Mendes, 2013) thus accessing respite services may have a beneficial effect on other areas of functioning. Making parents aware of services and how to access them may appear a superficial role. However, parents have described difficulties with practical and financial burdens and competing demands on their time, leading to them putting off researching such services in favour of practical tasks, reinforcing their feelings of isolation and burden (Cockett, 2012).
Evidence also supports the use of named nurse practitioners for children with medically complex conditions to improve care and service outcomes (Looman et al, 2018). However, Looman et al's (2018) study also found this was limited when delivered via telephone or video call rather than in person. Having named professionals promotes consistency of care and support, reduces the number of times a parent has to explain their family's needs and builds trusting relationships. This nurse or key professional can act as an advocate and service facilitator for the child and family, reducing family burden and thus improving outcomes.
LEARNING OUTCOMES
- Understand that caring for a child or young person who is dependent on medical technology has a profound impact on families
- Understand that families can become isolated without consistent and thoughtful support
- Recognise that parents and carers become experts in the care of their child or young person and their expertise should inform a holistic care plan when in hospital
- Understand that professionals can play an important role as advocate, facilitator and champion for families
- Recognise that normalisation can be beneficial for families and can improve outcomes