One of the most common major birth defects are congenital heart diseases, which relate to problems with the heart and/or the major arteries Baardman, Bakker, van Dis, Bots, & Vaartjes, 2011; Vaartjes, Bakker, & Bots, 2007. As stated by Roman & Parrish (2011), CHD are “characterized by anomalies in the structure of the heart and its related valves and vessels”. In the Netherlands the average prevalence of CHD is 74 out of 10.000 births, indicating that 1.300-1.400 children with CHD are born annually (Baardman et al., 2011).
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Common problems in children with CHD are growth failure and malnutrition (Roman & Parrish, 2011; Varan, Tokel, & Yilmaz, 1999; Woodward, 2007). Growth failure and malnutrition are generally caused by inadequate intake, inefficient absorption, and/or increased energy requirement (Roman & Parrish, 2011; Varan et al., 1999). Children are often too weak to eat, which directly relates to inadequate intake (Roman & Parrish, 2011). The physiologic stress of surgery and possible postoperative complications have also been associated with a failure to thrive among children with CHD (Davis, Davis, Cotman, Worley, Londrico, Kenny, & Harrison, 2008). Due to the growth failure and/or malnutrition, many infants require supplemental feeding in the form of enteral feeding, which is also known as tube feeding (Roman & Parrish, 2011). Tube feeding is an effective tool to reduce malnutrition and inadequate growth among children with increased energy needs (Forchielli & Bines, 2008; Mason, Harris & Blissett, 2005).
Tube feeding might be necessary for survival and adequate growth, but is nonetheless seen as a disruptive technology for both the child and parents’ everyday life (Heaton, Noyes, Sloper & Shah, 2005). Among children that receive or have received tube feeding, long-term oral feeding difficulties often occur (Mason et al., 2005). The transition from tube feeding to normal food can be difficult, which sometimes leads to children continuing tube feeding long-term although able to eat (Wright, Smith, & Morrison, 2010). Various factors contribute to this difficult transition. For instance, resistance to weaning onto oral feeding, undeveloped feeding skills, and a disrupted appetite are of influence (Mason et al., 2005; Wright et al., 2010).
Due to advances in medical technology and medical research, better treatment options are available (Wang & Barnard, 2004). As stated by Forchielli & Bines (2008), “advances in tube design, methods of delivery, and formulas have made enteral nutrition therapy safer, cheaper, and easier to administer for a wide range of disorders in childhood”. Over the past decades, delivering tube feeding at home has become an important addition in the management of the care for children and infants with chronic diseases (Forchielli & Bines, 2008). This transition from hospital-based care to home-based care is a results of various factors. As was observed by Wang & Barnard (2004), for instance the increasing hospital costs, the ability to transfer medical technology into the home, and the consumer preference. The increase in home-based care is also believed to be a result of emphasis on the community as a support structure (Puntis, 2001; Kirk & Glendinning, 2002).
Home-based care for children with CHD has both positive and negative aspects in comparison to hospital-based care. One of the benefits of home-based care for children with CHD is that it is believed that this can relieve malnutrition, and increase the wellbeing of the child (Puntis, 2001; Daveluy, Guimber, Mention, Lescut, Michaud, Turck, & Gottrand, 2005). Besides the benefits for the child, the delivery of tube feeding can also provide a respite for families and caregivers, as the duration of the feeding process is likely to decrease (Forchielli & Bines, 2008).
Nonetheless, there are also certain limitations to tube feeding a child at home. First, as described by Woodward (2007), there are still certain risks of aspiration if the tube is dislodged or incorrectly placed. Secondly, as stated by Forchielli & Bines (2008), “for some children […] a nasogastric tube is associated with psychological trauma and feeding aversion”. Thirdly, because the parents or caregivers are expected to perform certain medical procedures that were previously only conducted by medical professionals, the impact of caring for a child with CHD is significant. As stated by Wang & Barnard (2004), “parents may experience contradictory expectations because they are asked to become sophisticated healthcare experts and be responsible for their child’s care at home, but at the same time are expected to defer to, and comply with advice from professionals”. Finally, it is hypothesised that the transition from tube feeding to solid food will have a longer duration in a home-based care setting then in a hospital-based setting. Parents expressed a lack in awareness and support among healthcare professionals about this transition, which influences the duration of the tube feeding (Van Drenth, Fokkema, Janssen, Page, Scheurwater, Schol, Soenessardien, & van der Zwet, 2012). When children are cared for in a hospital, it is hypothesised that the healthcare professionals are more aware of the relevance of decreasing and ending tube feeding, as they see the child on a regularly basis.
Possible solutions for the negative aspects of home-based care are to provide adequate support and training to parents or caregivers (Forchielli & Bines, 2008; Puntis, 2001). Awareness about the relevance of ending tube feeding as soon as possible is also of great importance. However, previously conducted research on behalf of the Patiëntenvereniging Aangeboren Hartafwijkingen (PAH) has shown that this support is currently not optimal. This research highlighted the need for optimising the support parents receive when tube feeding a child at home (Van Drenth et al., 2012). An important aspect of the lacking support, as expressed by the parents, was the need for information. This research has also shown that parents are experiencing a lack in support with regard to reducing and eventually ending the tube feeding (Van Drenth et al, 2012). The current study will therefore directly relate to optimising this support in relation to the level of awareness about providing and eventually ending tube feeding among parents or caregivers and healthcare professionals at the time of discharge from hospital to home. In order for parents or caregivers to adequately provide tube feeding at home, certain competencies in the form of knowledge and skills are required.
Research objective
The objective of this study is to make recommendations to the PAH regarding how to optimally train parents in providing tube feeding at home to a child with CHD, to create awareness among parents and professionals about reducing and ending tube feeding as soon as possible, and to describe what is necessary to achieve the optimal training by analysing the opinions of parents and healthcare professionals about the knowledge and skills that are required for providing and reducing tube feeding.
Main research question
The research question regarding the research objective is as follows:
“What is necessary to optimally train parents to provide tube feeding at home to a child with CHD, and how can awareness among parents and healthcare professionals about the relevance of ending tube feeding as soon as possible be increased?”
1.2 Contextual background
Relevant background information will be presented in this chapter with regard to the following topics: 1) CHD, where more in-depth information is provided and different treatment options are presented, 2) tube feeding, where the method of tube feeding is described and long-term effects are presented, 3) home-based care, where consequences of home-based care are given, and 4) training and support, in which options for optimal training and support are given and a reflection on the method of training is presented.
CHD
The anomalies in the structure of the heart and valves are a result a malformations in the fetal period. CHD can be structured according to three groups, 1) congenital construction errors of the heart, 2) cardiomyopathy, and 3) arrhythmias (PAH, n.d.). The cause of the defect is often unknown; however maternal smoking, genetics, and chromosomal abnormalities are believed to be contributing factors to CHD (Roman & Parrish, 2011; Baardman et al., 2011). As described by Roman & Parrish (2011), the diagnosis of CHD can be given prenatal with use of echocardiography, or postnatal after heart murmur, cyanosis, or failure to thrive is presented. Currently, CHD are often diagnosed prenatally (Baardman et al., 2011). As stated by Roman & Parrish (2011), “although CHD are relatively rare, they are the most common birth defect responsible for mortality in the neonatal period”. The survival of individuals with CHD depends on the type and severity of CHD (Nousi & Christou, 2010). Nonetheless, nowadays 85 percent of the children with a CHD reaches adulthood (PAH, n.d.). In some cases the CHD may resolve spontaneously, however most children require some form of medical or surgical treatment (Roman & Parrish, 2011; PAH, n.d.). The treatment that is necessary for instance depends on the type of CHD, the severity of the defect(s), and the clinical condition of the child (Roman & Parrish, 2011).
Tube feeding
As many factors impact a child with CHD from a normal feeding process, nutrition management is an important aspect. Often, children suffering from CHD are malnourished. As stated before, this malnutrition can have various causes; inadequate intake, inefficient absorption and utilisation, and/or increased energy needs (Roman & Parrish, 2011). In order to decrease the malnutrition in children with CHD, tube feeding is often provided. Tube feeding is also believed to be associated with decreasing infections and decreasing the length of hospital stay (Wolovits & Torzone, 2012). Tube feeding is defined by Forchielli & Bines (2008) as “the delivery of food via a tube directly into the gastrointestinal tract”. Tube feeding mimics the normal gastrointestinal response following the ingestion of a meal. However, the oral phase of obtaining a meal is not mimicked by tube feeding (Forchielli & Bines, 2008).
Home-based care
As stated before, home-based care has become an important component of healthcare. Daveluy (2005) believes that home-based tube feeding is a safe and effective support method, that it can relieve malnutrition, and leads to children being happier and more active. It was stated by Daveluy (2005) that “home-based enteral nutrition is a valuable alternative to hospital-based enteral nutrition. However, as observed by Wang & Barnard (2004), the development of the home care environment has resulted in blurring of the boundary between hospital and home. The authors believe that “the traditional meaning of home is altered by intrusion of medical machinery” (Wang & Barnard, 2004). Parents are carrying out complex clinical procedures, which were normally undertaken by professionals (Kirk & Glendinning, 2002).
Training and support
The training and support that parents and primary caregivers receive is very important. Previously conducted research, on behalf of the PAH, indicated that the support and training is currently not optimal (Van Drenth et al, 2012). The study indicated that support from medical professional is not always sufficient, that there is a lack in sufficient information, and that communication problems often occur (Van Drenth et al, 2012).
Beliefs about the training and support parents should receive are stated in literature. Firstly, Forchielli & Bines (2008) believe that attention should be given to appropriate patient selection, education, and the provision of technical support. The authors believe that the training of patients, caregivers, or their families is ideally performed by a multidisciplinary team (Forchielli & Bines, 2008). Forchielli & Bines (2008) also state that an essential component of successfully administering tube feeding at home is the availability of health professional to provide support. It was observed from previous research that this essential component is currently insufficient (Van Drenth et al, 2012). Secondly, Puntis (2001) states that “training and support is needed, but also believed that the hospital outreach services […] should be further developed in order to bridge the gap between home and hospital”. The author believes that such an activity should be coordinated by a multidisciplinary nutritional team (Puntis, 2001).
Thirdly, Griffin (2002) states that “support of the family of the infant with CHD requires a thorough assessment of the family’s knowledge of heart disease, previous experience with illness, and interpretation of the current situation”. The author believes that parents should be supported by the provision of information and the inclusion of families in decision-making (Griffin, 2002). As stated by Griffin (2002), “families must also be active participants in discharge planning to ensure a successful transition from the hospital to home”.
Because of the importance of the transition from tube feeding to oral food, the awareness among healthcare professionals about this topic must increase. Previous research has revealed a lack in provision of information to parents about this transition (Van Drenth et al, 2012). The training and support that is provided to parents should therefore also focus on the reduction of tube feeding, in order to prevent the child from continuing tube feeding while able to eat. A speech therapist might be of help to support parents in the transition from tube feeding to normal food (Schauster & Dwyer, 1996; Van Drenth et al, 2012).
1.3 Conceptual model
In order for parents to properly provide tube feeding at home to their child, it is important to determine the following aspects: the competencies required, the method of training the parents, and the person that should be responsible for this training. The conceptual model that is used within this research focuses on the competencies that are required. The method of training and who should be responsible will be addresses in the data gathering section of this study.
A conceptual model is used to define the research subject and serves as a tool to set out the focus and content (Verschuren & Doorewaard, 2010). The conceptual model is part of a research framework (Appendix 1). The conceptual model used within this study is based on Miller’s Framework for Clinical Assessment (1990) and Bloom’s Taxonomy of Learning Domains (1956).
Miller’s Framework for Clinical Assessment
The Framework for Clinical Assessment by Miller is given in the form of a pyramid. The base of the pyramid relates to the assurance that one knows what is required to carry out a professional procedure; it is seen as the knowledge base (Miller, 1990). The second level of the pyramid relates to knowing how to use knowledge acquired at the first level, it is seen as the competence level (Miller, 1990). The third level of the pyramid relates to showing how to apply the gained knowledge in practice, it is seen as the performance level (Miller, 1990). The top level of the pyramid relates to doing when functioning independently in practice, it is seen as the action level (Miller, 1990). The first two levels of the pyramid are seen as the cognition zone, and the upper levels are elements of the behaviour zone (Mehay & Burns, 2009). As stated by Miller (1990), “While it may be reasonable to assume that either action or performance implies achievement of the more basic elements of the triangle, measurement of the infrastructure (i.e. knowledge and competence) cannot be assumed to predict fully and with confidence the achievement of the more complex goals”. Someone who knows how to do something will not necessarily do it. The objective when applying Miller’s Framework for Clinical Assessment is to define if a certain level of mastery has been achieved (Miller, 1990). It is only in the does level that someone truly performs.
Bloom’s Taxonomy of Learning Domains
Bloom’s Taxonomy of Learning Domains is a model that splits learning into three different domains: 1) cognitive domain, 2) affective domain, and 3) psychomotor domain (Bloom, Engelhart, Furst, Hill, & Krathwohl, 1956). The domains consists of several levels with a certain hierarchy. Previous levels must be mastered before progressing to the next level. The cognitive domain was defined by Bloom et al. (1956) as “those objectives which deal with the recall or recognition of knowledge and the development of intellectual abilities and skills”. This domain consisted of six major classes, which were revised by Anderson & Krathwohl in 2001. The major classes in the revised cognitive domain are: remember, understand, apply, analyse, evaluate, and create (Krathwohl, 2002). The original cognitive domain was one dimensional, but the revised taxonomy is two-dimensional by obtaining dimensions of knowledge (Krathwohl, 2002). The affective domain includes objectives that relates to changes in interest, attitudes and values (Bloom et al., 1956). The five major classes of the affective domain are: receiving, responding, valuing, organising and conceptualising, and characterising by value or value concept. The psychomotor domain relates to the motor-skill area (Bloom et al., 1956). The levels of the psychomotor domain were not defined by Bloom et al. (1956), as they did not believe the development of a classification was useful at that moment. However, others have categorised this domain into several levels. An example of a useful categorisation of the psychomotor domain is Dave’s (1970) (O’Neill & Murphy, 2010). The following levels of the psychomotor domain were distinguished by Dave: imitation, manipulation, precision, articulation, and naturalisation (University of Leeds, n.d.). Bloom’s Taxonomy is also known as the ‘knowledge, skills, and attitude’ structure of learning. The conceptual model used within this study will only take the skills and knowledge levels of learning into account, as it is hypothesised that the attitude of the parents caring for a tube feeding dependent child at home is similar among all parents.
Conceptual model
The framework of Miller and the Taxonomy of Bloom were combined by Mehay and Burns in 2009, this framework formed the basis of the conceptual model used within this study (Figure X).
Figure X: Conceptual model comprised of Framework for Clinical Assessment by Miller and Taxonomy of Learning Domains by Bloom, adapted by Mehay & Burns
When combining Miller’s Framework for Clinical Assessment and Bloom’s Taxonomy of Learning Domains, both knowledge about a certain procedure and actual skills with regard to the procedure are taken into account. At the base of familiarising with and optimising a certain procedure are knowledge and the skills required. With use of the conceptual model this study aims to determine how to stimulate parents and caregivers in the transition to higher levels of competence.
Concept definitions
Below, the concepts of the conceptual model are specified for the purpose of this study.
Skills
The concept skills in this study refers to the physical ability of the parent to provide tube feeding at home to their child. Necessary skills are for instance related to tube placement, tube technicalities, provision of tube feeding, caring of mouth and nose region (Van Drenth et al., 2012; Altman, 2009; Meander Medisch Centrum, 2011).
Knowledge
The concept knowledge in this study refers to the actual acquaintance with and level of knowledge of parents about tube feeding their child at home. The knowledge that is required can for instance relate to the type of CHD, alarming symptoms, recognition of problems that may arise, what to do in certain situation, general knowledge about tube feeding, tube technicalities, and practical knowledge about materials and supplies necessary (Van Drenth et al., 2012; Holden, Puntis, Charloton & Booth, 1991; Altman, 2009; Meander Medisch Centrum, 2011).
The following four concepts relate to the levels of competence. Both the knowledge and skills of every level must be mastered in order to proceed to the next level.
Knows – knowledge level
The knowledge level within this study relates to parents knowing what is required to provide tube feeding to their child.
Knows how – competence level
The competence level within this study relates to parents knowing how to use the knowledge and skills they have accumulated at the previous level.
Shows how – performance level
The performance level within this study relates to parents actually applying the skills and knowledge, by showing how to provide tube feeding to their child.
Does – action level
The action level of this study is the level where parents actually provide tube feeding to their child at home, without supervision or instruction from a healthcare professional.
Research questions and sub-questions
As the concepts are now defined for the purpose of this study, the conceptual model can be used as a directive for the construction of several research questions and sub-questions. In order to answer the main research question (Chapter 1.1) the following research questions and the related sub-questions are stated:
How can parents be optimally trained to provide tube feeding at home to a child with CHD?
What type of knowledge and skills are required to proceed from the knowledge level to the competence level?
What is necessary to proceed from the competence level to the performance level?
What is necessary to proceed from the performance level to the action level?
How and by whom should the knowledge and skills that are required for providing tube feeding at home be transferred to parents?
How can awareness among parents and healthcare professionals about reducing and ending tube feeding as soon as possible be created?
What is the current level of awareness among parents and healthcare professionals about reducing and ending tube feeding?
What is necessary to increase the level of awareness among parents and healthcare professionals?
How and by whom should this awareness be increased among parents and healthcare professionals?
Background information was gathered and in-depth research was conducted in order to answer the research questions and main research question.
Appendix 1: Research framework
The research framework (Figure X) of this study is given within this chapter. A research framework is defined by Verschuren & Doorewaard (2010) as “a schematic representation of the research objective and includes the appropriate steps that need to be taken in order to achieve it”.
Figure X: Research framework
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