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Consequences of Needle-Related Medical Procedures: A Hermeneutic Study With Young Children (3–7 Years)
Journal of Pediatric Nursing (2015) xx, xxx–xxx
Consequences of Needle-Related Medical Procedures: A Hermeneutic Study With Young Children (3–7 Years) Katarina Karlsson PhD Student a,b,⁎, Ingela Rydström PhD a , Maria Nyström (Professor)a , Karin Enskär (Professor)b , Ann-Charlotte Dalheim Englund PhD a a
Faculty of Caring Sciences, Work Life and Social Welfare, University of Borås, Borås, Sweden Department of Nursing Sciences, CHILD Research Group, School of Health Sciences, Jönköping University, Gjuterigatan 5, Jönköping, Sweden b
Received 26 January 2015; revised 8 September 2015; accepted 16 September 2015
Key words: Younger children; Lived experiences; Consequences; Needle-related medical procedures; Caring science; Reflective lifeworld research; Lifeworld hermeneutic
Background Needle-related medical procedures (NRMPs) are often frightening and cause children anxiety and pain. Only a few studies have examined the perspectives of younger children. More knowledge is needed about younger children's experiences in caring situations such as NRMPs. Aim: The aim of this study was to explain and understand the consequences related to NRMPs from younger children's perspectives. Methods: Participant observations and interviews with younger children who had experienced NRMPs were analysed using a lifeworld hermeneutic approach. Results: Experiencing fear is central for younger children during an NRMP and interpretation of its consequences formed the basis for the following themes: seeking security, realizing the adult's power, struggling for control, feeling ashamed, and surrendering. A comprehensive understanding is presented wherein younger children's experiences of NRMPs vary across time and space related to weakening and strengthening their feelings of fear. Conclusions: Awareness is needed that adults' power becomes more obvious for children during an NRMP. Children's surrender does not necessarily imply acceptance of the procedure. Providing children with opportunities to control elements of the procedure creates a foundation for active participation, and vice versa. © 2015 Elsevier Inc. All rights reserved.
CHILDREN ARE A vulnerable group in society (HewittTaylor & Heaslip, 2012); they are also vulnerable when they need care as patients (Coyne, Hayes, & Gallagher, 2009). Medical procedures have been found to cause fear, anxiety and pain (Blount, Piira, Cohen, & Cheng, 2006; Ives, 2007; Young, 2005). The child's previous experiences of health care are vital because it can either increase or decrease the child's fears in ⁎ Corresponding author: Katarina Karlsson, PhD Student. E-mail address: [email protected].
http://dx.doi.org/10.1016/j.pedn.2015.09.008 0882-5963/© 2015 Elsevier Inc. All rights reserved.
relation to needle-related medical procedures (NRMPs). Earlier painful experiences can act as factor of distress (Noel, McMurtry, Chambers, & McGrath, 2010; von Baeyer, Marche, Rocha, & Salmon, 2004). Children between 3–7 years of age may perceive health care as something to fear since fantasy tends to dominate their thinking. Children may fear needles because of their undeveloped sense of body integrity, and they may also fear mutilation. They may perceive needle procedures as a punishment for doing something wrong (Bibace & Walsh, 1980; Koopman, Baars, Chaplin, & Zwinderman, 2004; LeRoy et al., 2003).
2 Researchers have noted that there has been a lack of research on the perspectives of younger children as patients (Irwin & Johnson, 2005; Kortesluoma & Nikkonen, 2006; Kortesluoma, Nikkonen, & Serlo, 2008); instead, research has focused on the perspectives of professional caregivers or parents (Jonas, 2003; Twycross, 2002; von Baeyer & Spagrud, 2007). However, recently the voices of younger children have been better represented in research showing that some interventions, such as injections and other needle procedures, cause them to feel fear (Kettwich et al., 2007; Salmela, Salanterä, & Aronen, 2009; Taddio et al., 2012). Children also experience the fear of pain, fear born of fantasy, fear due to a lack of information and fear of unfamiliar environments (Salmela, Aronen, & Salanterä, 2011; Salmela et al., 2009), as well as the fear of being separated from their parents (Aldiss, Horstman, O'Leary, Richardson, & Gibson, 2009; Salmela et al., 2011; Salmela et al., 2009). Bird and McMurtry (2012) and Cullone (2000) describe patterns of fear development. Bird and McMurtry (2012) describing children's fear as “a form of a negative affect that has been defined as a reaction to a real or perceived threat and is considered an adaptive part of child development” (p. 527). Negative events, such as being afraid, may increase the perception of pain (Bird & McMurtry, 2012). In this present study, investigations or actions involving needles are defined as NRMP. These procedures are used to prevent illness, for diagnostic purposes and to perform treatment (c.f. Uman et al., 2013; Uman, Chambers, McGrath, & Kisely, 2006). In Sweden, parents' attendance and participation are considered vital when younger children are afraid and in need of care (c.f. European Association for Children in Hospital (EACH) [EACH], 2006), and caring actions have been found to be characterized by attendance and participation (Karlsson, Dalheim Englund, Enskär, & Rydström, 2014; Karlsson, Rydström, Enskär, & Dalheim Englund, 2014). National NRMP guidelines in Sweden advocate for combining treatment with a positive caring approach (Medical Products Agency, 2014). Knowledge of younger children's experiences of health care, particularly in relation to actions that may cause them fear, anxiety or pain, is needed to further understand their reactions. There is a gap in the literature concerning the consequences of NRMPs from the perspective of younger children's experiences. Thus, this study sought to give children in the 3–7 year age group a voice so they can share their experiences; ultimately, its goal is to improve care during NRMPs. Therefore, the aim of this study was to explain and understand the consequences related to NRMPs from younger children's perspectives.
Methods Design A lifeworld hermeneutic approach inspired by Gadamer (2004) and Ricoeur (1976), as suggested by Dahlberg, Dahlberg, and Nyström (2008), was chosen for this study.
K. Karlsson et al. This approach builds on a lifeworld perspective by addressing the phenomenon which is the consequences related to NRMP as experienced by younger children in Swedish health care. According to Dahlberg et al. (2008), lifeworld research requires the researcher to maintain an open and critical approach throughout the entire research process. No predetermined hypothesis or other interpretive foundations are established in advance. Therefore, the research team in this study practiced openness towards the phenomenon and tried, as much as possible, to avoid influences from previous experiences and knowledge. Attention was focused on what was unexpected in the data, what Gadamer (2004) calls “the otherness.” This means being aware of one's own pre-understanding in order to be able to see what is new regarding the phenomenon instead of only confirming what one already knows. In order to suggest explanations for latent meanings in the data, tentative explanations were validated against specific criteria (Ricoeur, 1976), which are described below.
Children as Participants Data collection was conducted at four different pediatric health care settings located in south-western Sweden: a pediatric primary care services unit (caring for children with different medical diagnoses); a pediatric inpatient care unit (one unit divided into two departments that care for children with all diagnoses); a pediatric outpatient care unit (caring for children with all diagnoses except ongoing infections); and a pediatric specialist clinic (caring for children with different medical diagnosis). All four units treated patients up to the age of 18. Twenty-one children participated in the study. They were recruited by nurses working in these settings in the immediate days before the NRMP or on the day of the procedure. The inclusion criteria were: the children had to be aged 3–7 years, they had to participate in an NRMP, they had to understand and speak Swedish, and their parents and nurses had to have given informed consent. Children with an acute or life-threatening illness at the time of the NRMP were excluded from the study. The 21 children who participated in the study varied in terms of their age, diagnosis and sex and they all had a variety of experiences related to NRMPs (Table 1).
Data Collection Data collection was performed through participant observations documented as video-recorded observations and/or field notes as well as meaning-oriented interviews that were audio recorded and transcribed verbatim. Data collection began when the child entered the room where the NRMP was to be performed. During the NRMP, the observer stood behind the camera without directly participating in the procedure but answered questions or assisted if needed. Field notes were written immediately after the NRMP was completed.
Young children and the consequences of NRMP
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Table 1 Demographics, diagnoses and treatment-related data for the children Demographics of the children (n = 21) Age of the children (years) 3 4 5 6 7 Sex of the child Female Male Parents present during NRMP Mother Father Both mother and father Type of visit Not scheduled Scheduled Diagnosis Allergy Cancer Gastro and bowel disease Genetic disease Infection Nonspecific Obesity Rheumatoid arthritis Tonsillectomy Reason for visit Investigation Infection Treatment (e.g. cancer, RA) Scheduled surgery Type of NRMP Capillary blood sample Venous blood sample Intravenous cannula insertion (IV) Needle insertion into central venous port Injections into the joints Skin test for allergies Pharmacological treatment Inhalation/Sedation with N2/02 Topical anaesthesia Emla® Topical anaesthesia Rapydan® (Children received pharmacological aids according to applicable routines within each unit) Time for the procedures NRMP Interval Mean Median Interviews Interval Mean Median
n 4 3 5 6 3 11 10 14 3 4 5 16 3 4 1 1 3 4 1 2 2 8 3 8 2 5 5 3 5 1 2 2 13 1
Minutes 4–30 11 10 9–60 36 37
After the NRMP was performed the children were interviewed. However, during the first six interviews, participant observations were only documented by the researcher's field notes. After receiving additional ethical approval, 15 interviews were video-recorded. This approach was added in order to capture the nuances of the phenomenon, such as the children's facial expressions, gestures and posture, as described by Sommer (2003). The video-recorded observations during the interviews were conducted at the same time as the interviews and field notes were written as soon as the interviews were completed. The interviews were preceded by a preparatory phase with the intention of familiarizing the child with the setting, an approach that is also described by Irwin and Johnson (2005) and MacDonald and Greggans (2008). This allows the interviewer to form an opinion about the child's level of maturity and current condition in order to formulate questions in an appropriate way (Spratling, Coke, & Minick, 2012). An example of an initial question is: “Would you like to tell me about the needle stick?” To obtain a deeper understanding, questions like “Can you tell me more?” and “What happened?” were asked. Since younger children may find it difficult to talk about their experiences when a direct question is asked, different tools were used and the interviews were conducted with help of play. To facilitate the children's ability to answer questions, they were asked to look into a ‘secret bag’ that contained dolls, stuffed animals and medical equipment. Using these different aids, the children engaged in play-acting to demonstrate what they had experience during the NRMP; meanwhile, the interviewer asked them questions. This method has been successfully used by Aldiss et al. (2009) and Gibson, Aldiss, Horstman, Kumpunen, and Richardson (2010). The interviews with children could also be done by letting the doll indirectly ask the child a question. This approach to asking questions has also been described by Aldiss et al. (2009) and Darcy, Knutsson, Huus, and Enskär (2014). Finally, in order to stimulate further reflection, the video-recording of the NRMP was shown to the child. The data collection process ended when the child left the room.
Data Analysis Video-recorded observations, sequences from transcribed video-recorded observations, field notes and meaningoriented interviews were used for the data analysis. Based on approach suggested by Dahlberg et al. (2008), all the data were carefully read and viewed until familiarity with it as a whole was achieved. The interpretation phase began by searching for and identifying the meanings in the data in relation to the aim of the study. Similarities and differences were identified, and the data were grouped into themes representing the meanings of the phenomenon. Themes were tentatively interpreted until everything related to the aim was included in the analysis. These groups of themes were compiled as preliminary interpretations and validated by using the following criteria suggested by Dahlberg et al. (2008) and Gustavsson (1996):
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The interpretation's source lies solely in the data, not in the researchers' pre-understanding. • An interpretation that leaves a significant variety of data unaccounted for is considered to be weak. • No contradictions should arise between the data and the interpretation. Throughout this part of the work, the analysis constantly moved back and forth between the material, described in the beginning of this section, and the preliminary themes. This was done to ensure that the interpretations, as far as possible, emphasized substantial meanings of the phenomenon, which is the consequence related to an NRMP as experienced by younger children. During this evaluative process, some tentative interpretations were rephrased or excluded. Five interpreted themes remained, each of which corresponded to the aim of the study. Finally, all of the themes were compared to reveal a meaningful common denominator that is presented as a comprehensive understanding. This comprehensive understanding is the main interpretation of the study, the highest level of abstraction that will lead to a well-informed proposal of how to understand the phenomenon. Level of abstraction is linked to the principle of going from the parts (interpretations of the children's report) to the whole (video-recorded observations, transcribed videorecorded observations, field notes and interview data), and vice versa. During this part of the analysis, the aim was to reach consistency concerning the pattern of the interpretations. During this analytical process, attention was focused on the meanings in the data and why these meanings emerged (Dahlberg et al., 2008). For this step in the interpretation process, the following validity criteria were added: •
No data of relevance to the aim of the study may be discarded due to lack of congruency with the main interpretation. • The tentative interpretations (the part) shall be related to the main interpretation (the whole), and vice versa (Dahlberg et al., 2008; Gustavsson, 1996).
Ethical Considerations The Helsinki Declaration (2008) was followed. Ethical approval was obtained from the Regional Ethical Review Board of Gothenburg (Dnr 724–10). Additional ethical approval to perform the video-recorded observations during the interviews was also obtained (TO99-12). All of the children received verbal information about the aim of the study, their voluntary participation and the possibility of withdrawing at any time without affecting their care; they were also assured that their confidentiality would be maintained, as described by Morse (2007). The children's assessment was obtained, as defined by Ford, Sankey, and Crisp (2007). The children's parents received verbal and written information with the same content and they gave their written consent. The contact details for the interviewer and
the supervisors' were provided if the children or their parents felt the need to talk about it.
Results Fear is a consequence that emerged through all of the themes and it is on this basis that the themes should be understood. The most salient findings from the data are the fear of pain related to the sharpness of the needles, the squeezing of fingers to obtain blood samples, the removal of the anaesthetic patch, and stasis, among other things. Less concrete, yet more frightening than the pain itself, is the fear of the unknown that arises from being unfamiliar with the procedures, the people present or the environment. The five interpreted themes describe different consequences of the children's experiences, culminating in a comprehensive understanding: seeking security, realizing the adult’s power, struggling for control, feeling ashamed and surrendering. Excerpts from the data show the connection between the data and the interpretation (see the validity criteria presented above).
Seeking Security When fear is experienced during NRMP, children seek security from an adult; and it is primarily parents who provide that security. The search for security is expressed verbally, through eye contact or in the search for physical intimacy. Parents' speaking on behalf of their child while in contact with staff seems to satisfy the child: Mom: "Is it possible to put another patch on as he thinks this one is hard to remove?" The child is crying and sniffles, saying: "Yes. I don’t want this annoying one" while watching Mom, looking grateful [Observation NRMP, five-year-old boy].
Seeking security is also amplified when another adult affirms the child's feelings: Nurse: "It's actually okay to be afraid. It actually hurts a little; it did hurt a little, didn't it?" Child: "Yes". He looks satisfied in getting support for his feelings [Observation NRMP, three-year-old boy]. Seeking security when afraid does not necessarily mean that the feeling of security is achieved. Security from the adult can be difficult to obtain if a parent is anxious, restraining the child and urging the staff to perform the NRMP: Mom: "Just do it" [the needle stick]. She brings the boy’s hand towards the nurse. The child begins to cry, trying to hide his hand. Mom: "Just do it". Child: "No". He looks sad and disappointed [Observation NRMP, four-year-old boy].
If adults do not believe the child's feelings, they may say that it is "not so bad" or "does not hurt.” The parents' own nervousness can also manifest in the way he or she talks about how capable and strong the child always is, making it
Young children and the consequences of NRMP difficult for the child to act in any way other than that which the parent just described. The parents' fear due to the child's illness can make them worried and sad during the procedure and this can encourage feelings of insecurity in the child: During the interview the child asked. “Mom, why did you cry before?” [Interview, six-year-old girl]. It is also difficult for the child to experience security from staff if they, for example, say: Nurse: "Are you big enough to sit by yourself or do you want Mom to sit beside you?" The child looks down at the floor, his arms are hanging beside the body, and he whispers "Mom" [Observation NRMP, four-year-old boy].
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Struggling for Control Struggle for control is achieved by being curious, asking questions, watching the nurses or telling them what to do: The nurse is about to pull the needle out from the central venous port. Child: "But, we must also have a dry compress?" [Observation NRMP, seven-year-old girl]. Other ways of struggling for control are either watching the procedure or blocking one's view with a book, breathing consciously and being relaxed, or intentionally using distraction techniques. Struggle for control while being cared for is also exemplified by concentrating intensely followed by a shift towards relief: The child asks with a low, whiny voice: "Will it hurt?”
Realizing the Adult's Power
Nurse: "Well, now you're numb" [topical anaesthetic].
Fear becomes obvious when the child understands that it is impossible to negotiate whether or not the NRMP will be carried out. The child realizes the adult's power to make all of the important decisions. The child's autonomy is limited to smaller practical issues, such as choosing which finger to use for the needle stick or whether to sit alone or on the parent's lap. When staff make light of an NRMP, the child's trust in them may be affected. Describing a skin test for allergies as feeling ‘tingling’, in spite of the fact that the procedure still involves a needle, may affect that level of trust. Being afraid and exposed to the adult's power may lead to protest, as when parents claim to have interpretative privilege, i.e. when parents claim that they know what is best for the child. These protests can take the form of short, barely audible sounds or shouting, screaming, armwaving and kicking. Reacting with protest may lead to problems with the child participating in the procedure as there is a risk of being restrained. Then the fear and powerlessness become a reality:
The nurse put in the intravenous cannula. The child looks up, exhales, and smiles "It feels like nothing" and looks relieved
They held my finger too tightly and they yelled too much // That’s what I don’t like.... They hold me … But she did not have to hold so tight …I wanted to go home [Interview, six-year-old girl]. When fear is a consequence of the adults' power, play can help the child process difficult experiences, such as being restrained during procedures. Some elements of play can probably be understood as a way to show, unconsciously, how the child experiences being exposed to the adult's power. With the help of play, wherein imagination seems to play a prominent role, the child may express his or her feelings, as in the following example: The child is playing violently with the doll and sticks a needle in the doll’s face. ”That's fun!” she shouts, talking about the doll and laughing [Observation interview, six-year-old girl].
The child's request to perform the procedure on staff, siblings or a parent may serve a similar purpose. Play can also be understood as a way of trying to achieve control.
[Observation NRMP, six-year-old girl].
In this example, the struggle for control seems to have succeeded. However, when struggling for control fails, it can lead to panic. The following is an example in which the struggle for control has failed: The child is held down by the parent while the nurse inserts the needle. The child is sweating, kicking, and screaming; hitting the nurse in the stomach; crying and trying to get away [Observation NRMP, five-year-old boy].
When children are afraid, play seems to help them regain control or prepare for an upcoming NRMP. Maintaining control through play is evident when the conversation goes through the parents or a doll, thus facilitating verbalization of the child's experience: Interviewer: “What is scary about needles?” Child: “I’ll whisper to her [the mother] so she can tell.” The child leans against her mother and whispers quietly. Mom: “The needles are sharp and they really hurt.” The child nods [Observation interview, six-year-old girl].
When strategies for controlling the situation fail, it becomes difficult to talk about or listen to others speaking about what has happened after the procedure. Difficulties in working through and reflecting on what is frightening do not promote feelings of control.
Feeling Ashamed When fear occurs in the presence of unfamiliar people, situations or environments, and if the child fails to control
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that fear, feelings of shame may occur. This may be expressed as difficulty in answering questions or in selecting a small sticker or toy from the staff. Feeling ashamed can manifest in shyness; for instance, turning the head away after the procedure: The child buries her face in her mother's throat, looking down at the floor. It seems like she is trying to hide her face. She looks ashamed. [Observation NRMP, seven-year-old girl].
Another example is when a child looks at the video-tape recording from the NRMP showing that he was sad and cried and kicked: Child: “Fast-forward a bit.” Mom: “Is it hard to watch?” The child looks down, looks as if he is ashamed and says with a lower voice: “Yes, you can fastforward some more” [Observation interview, four-year-old boy].
Other signs of shame following episodes of crying and loud protests include meeting subsequent questions regarding the experience with silence, talking about other things or changing the subject. Being ashamed also seems to arise when adults talk to each other about the child's behavior when afraid or a sibling's crying because of the child's inability to control himself or herself during the NRMP: Mom: "Look Alex, now Karin is terrified because you are crying." The child stops crying. His entire body is shaking as he tries to restrain himself: "It did really hurt.” He looks down and seems ashamed. He cannot stop crying [Observation NRMP, four-year-old boy].
Being ashamed is also observed when a child first says one thing but, upon questioning by an adult, may change his or her opinion: Child: "It hurt.” Mom responds with a firm voice: "Yes, but it wasn’t that bad." The child looks down at the medal he received for bravery and responds with a low voice: "Not so bad,” looking ashamed [Observation NRMP, four-year-old boy].
Surrendering Surrendering to treatment is the process of the child realizing the ineffectiveness of panic-driven active refusal and, instead, passively receiving treatment. Panic is the worst-case scenario, which can occur when the fear is extreme, resulting in loss of self-control, but which upon easing as a result of decreased fear, may lead to surrender. One child explains his thoughts about the NRMP that may explain why he did not surrender and continued to feel panic: “If you smash the part which produces blood, then you have a cardiac arrest and you die anyway.
The heart will stop making blood and if it does not produce blood there won’t be enough blood to the brain in order to keep the body going” [Interview, seven-year-old boy].
Surrendering to the NRMP may be the only option to regain control when the child is not so afraid that panic dominates. In order for this to happen, the child must, to some extent, adapt to the situation. Adaptation is preceded by gaining control of the only aspect that the child can decide on: his or her own behavior. Yet adaption is not only experienced as positive. It can build on the adults' expectations, acceptance or previous situations where the experiences of the NRMP have been worked through. In time, hopefully new and less frightening experiences of NRMPs will occur. This will lead to a gradual adaptation and, possibly, the child will become accustomed to NRMPs. Another sign of surrendering is to say, spontaneously, that procedures do not hurt and that the next time there is no need for the child to be afraid. The child is trying to convince himself or herself that the NRMP is manageable. Paradoxically, the opposite can be demonstrated in play as a way of working through frightful experiences. The child can act out situations where he or she has felt forced to surrender, as in the following example when the child is playing with a doll after the procedure: Child: [Shouts at the doll]. “You must be strong” Interviewer: “What happens if one is not strong then?” Child: “Then you're screaming and crying.” The child looks upset and angry [Observation interview, four-year-old boy].
Surrendering and adapting to a situation can also be shown when repeated NRMPs can result in developing routines during the procedure. These routines may consist of nurses doing things in a certain way directed by the child while, for example, simultaneously using a metaphor: When the nurse put the needle in the central venous port, the child says with a singing voice, "slow as a snail when it slides" [Observation NRMP, five-year-old boy].
Adapting to the situation is also accomplished by enabling the child to complete certain actions, such as removing a local anaesthetic patch or swabbing the area before the needle stick. When this works well, some NRMPs can be done without help from parents. Once the child is accustomed to the NRMP, it is easier for him or her to see the connection between the sampling and the illness, or that the topical anaesthetic is used to reduce pain. The child can also begin to understand the number of NRMPs remaining in the treatment.
Comprehensive Understanding Younger children's experiences of NRMPs vary across time and space related to their weakened and strengthened
Young children and the consequences of NRMP feelings of fear. The fear is reinforced when imagined expectations about something painful and scary dominate and it is weakened if the child, at least to some degree, succeeds in controlling the situation. Play has an important role related to moving towards or away from fear. The child's play can also give the adult a picture of the child's expectations and imagination before the NRMP or the experiences of the NRMP afterwards. This enables the adult to understand and help the child address his or her feelings in words. Play and language make it easier for the child to understand the situation, and when it succeeds it seems to be a step in the process of working through feelings. When the child seeks security in an adult, the adult's response becomes extremely important. In the absence of security, it is difficult to overcome fear, which may manifest in the form of open protest. The protest may initially be an attempt to gain control of the situation, but it can easily grow stronger and result in the loss of selfcontrol, which creates a risk that the child will be restrained during the NRMP. This makes the child feel ashamed and humiliated as well as powerless, having lost the right to control his or her own body. Experiences of having succeeded in mastering previous or current NRMPs can be seen to facilitate reconciling oneself to the adult's power, especially if the adult can convey to the child that he or she wishes the child well. This makes it possible for the child to surrender, and to some extent reconcile, to the procedures leading to self-control and opportunities for participation. The reverse is also true: participation in decisions about how to carry out an NRMP promotes self-control. As a result, the child can take advantage of the opportunities available and desire to determine how the NRMP should be performed.
Discussion This study indicated that fear is an outcome of NRMPs and it permeates children's experiences. Therefore, it is important to understand the children's struggles in order to reduce their fear. This struggle relates to their previous experiences of NRMPs and, in this context, it is vital to realize the impact of play and imagination. Children's imaginations seem to be important for making the NRMP intelligible and for processing the procedure afterwards. For some children, imagination seems to take over and realistic boundaries become blurred. If this happens, it is not to the child's benefit and it may contribute to a loss of control. As stated by Bowlby (1988) and further developed by Walsh, McGrath, and Symons (2008), parents represent security; experiencing pain and anxiety and being at risk of being separated from parents may affect a child's attachment behavior. This is in line with Karlsson, Dalheim, et al. (2014) who found that parents strive to maintain their role as a secure base so that their own fears do not affect the children's ability to feel secure during procedures. When care is provided, it is necessary that staff members be aware of the importance of parental involvement. Earlier studies have found great variations in staff preferences regarding parental involvement during medical procedures
7 (Boudreaux, Francis, & Loyacano, 2002; Waseem & Ryan, 2003), but Piira, Sugiura, Champion, Donnelly, and Cole (2004) concluded that parents should be given the opportunity to attend. The fact that parental involvement is important is noted by Karlsson, Rydström, et al. (2014b), but the specifics must be based on the parents' ability, which has also been noted by McCarthy and Kleiber (2006). Therefore, staff need to be aware that parents may have been subjected to procedures during their childhood that may have caused them problems; thus, staff may need support to facilitate parental involvement (Karlsson, Dalheim, et al., 2014). This is made possible by maintaining an open attitude and asking parents about their fears and previous experiences. In this study, the children seemed to be especially frightened by the power that adults hold when restraint is involved. Whether or not to restrain a child for an NRMP is a complex decision; other measures have to be considered. For instance, taking a break and letting the child recover, providing additional information through age-appropriate play or using pharmacological sedation combined with pain relief are other possible options, provided that the child is not in a life-threatening situation that requires an immediate NRMP. Nothing in this study indicated that restraint could be of any benefit from the child's perspective. Furthermore, other studies on children restrained during procedures (Dresser & Melnyk, 2003; Harder, Christensson, Coyne, & Söderbäck, 2011; Pearch, 2005) have indicated that if procedures are carried out against the children's wishes, in the words of Söderbäck (2013, pp 7–8), “forced engagement and resigned engagement” can result. If restraint during NRMPs leads to intense pain and anxiety, previous research has noted that problematic negatively exaggerated memories may result (Kennedy, Luhmann, & Zempsky, 2008; Noel et al., 2010) leading to, for example, needle phobia and medical care avoidance (Noel et al., 2010; Taddio et al., 2009). Direct changes in the pain system may occur (von Baeyer et al., 2004; Walco, 2008), which may lead to the above-mentioned problems. When NRMPs are performed against the children's wishes and restraint is needed two major issues should be considered. First, it is important to reduce the child's suffering during the actual procedure and, second, the actions taken to minimize problems during the procedure can counteract future problems, also described by Walco (2008). The results from the present study suggested that when struggling for control, children strive to manage the procedure by counteracting their fear in different ways. This may indicate that even young children are competent to foresee that which is not immediately present. Such a suggestion is congruent with Stern (1985) who has argued that even infants and young children are pre-logic and coacting individuals. Kortesluoma et al. (2008) has added that young children have a refined understanding of illness and hospitalization. This study indicates that young children have an inherent capacity to desire to understand the NRMP. They need the
8 procedure to be manageable; they want to participate in decisions (c.f. UNICEF, 1989), thereby making the procedure comprehensible. Thus, it is the staff's responsibility to provide age-appropriate information, as described by Edwinson Mansson and Dykes (2004), based on the individual child's needs so that the child can act within his or her own competence. Being ashamed prevents all such possibilities. This may occur when children are not able to act in the way in which they believe adults want them to behave. According to von Baeyer et al. (2004), children who feel ashamed or embarrassed in the presence of unknown people and may feel that pain “is socially undesirable” (p. 244) may react by not voicing their pain during NRMP. According to Erikson's life span theory, shame is a stage that belongs to the 1½ -3 year age range in a child's life (Erikson, 1975). These stages are built upon a hierarchical order and the age ranges only reflect a rough approximation as they are based on large individual differences in child development (LeRoy et al., 2003); furthermore, during illness and stress (such as NRMP), regression may occur (Piaget & Inhelder, 1969). This suggests ‘feeling ashamed’ as the most likely feeling children experiences during NRMP. One way for staff to counteract feelings of being ashamed is by being genuine with and affirming of children, not trying to change the children's opinion, and by taking children seriously, for example, when they say they are afraid, sad or in pain. Children's loss of self-control due to extreme fear appears to mark the point at which the NRMP experience has become incomprehensible and frightening and the children's search for a sense of security has been fruitless. Consequently, we can conclude that the adults' task around an NRMP is to ensure that the weighing pain is not weighted in a negative direction. Accomplishing this requires staff awareness regarding management of NRMPs so as to reduce harm to the child while performing a procedure that is often vital for continued health.
Methodological Considerations The methodological issues associated with research on/with younger children include that it may be challenging for an adult researcher to comprehend the world in the way in which a child would experience it. Another issue is that children's use of language is different from that of adults (Punch, 2002). Therefore, as Holland (2009) noted, is it vital to consider ethical issues when conducting research that involves children. One way to ensure that children's vulnerability is examined in research is to include children's perspectives as early as possible in the research design. Based on the above reasoning, it is advantageous to use a participatory design, like the one used in this study that utilizes child-focused techniques, such as play, dolls and medical equipment. Similar methods have been successfully used previously (Aldiss et al., 2009). Working in this manner, this study enabled 21 young children to express their experiences about NRMP.
K. Karlsson et al. Previous studies have investigated the ability of children, ranging in age from 3 to 4, to express their feelings about their experiences. Docherty and Sandelowski (1999) and Instone (2002) have established that children as young as 3 can participate in interviews. Howard (2003) has indicated that a 3- or 4-year-old may report about experiencing pain and identify its location and characteristics. Alderson (2007) added that a child's previous experiences are as important as his or her age and maturity level. In this study, some of the younger children had limited verbal ability. This required sensitivity to the child's choice of words and expressions, using complementary ways to communicate; thus, participant observations were also used. During the first six interviews only field notes were used. It is difficult to know if this has affected the outcome. However, one assumption is that if only field notes had been used in all 21 interviews the children's opportunity to express themselves about NRMP would have been restricted. The children were recruited with assistance from nurses. It has not been identified which children the nurses chose not to ask, nor which children declined to participate. It is also difficult to determine if this selection process affected the results, but on the basis of the variations in the data, it does not seem to have had a negative impact on the findings. The children received pharmacological aids according to applicable routines within each of the pediatric units. Since topical anaesthesia is not used with a capillary blood sample and skin test for allergies, seven of the 21 children in this study received no pharmacological treatment during the NRMP. The comments from the children seemed to be similar irrespective of the use of pharmacological means. The participant observations and interviews were sometimes perceived as quite cluttered. Yet, as Irwin and Johnson (2005) have noted, it was about learning to “go with the flow” (p. 829). Parental presence during interviews is important, also noted by Irwin and Johnson (2005), not only to act as the child's secure base, but, to also assist the child during the interview as younger children's normal communication is more or less facilitated through their parents (Aldiss et al., 2009). The majority of children who were invited to play with dolls, stuffed animals or other play materials seemed to feel that doing so facilitated the interview. Aldiss et al. (2009) have claimed that the use of puppets may reduce the balance of power between the child and the researcher. Video-recorded observations may affect the child's integrity and it was important that there was sensitivity to any indications that the child no longer wanted to participate. Two children who had been restrained during the NRMP could not handle seeing themselves on the video during the interview and, subsequently, the film was turned off. Even if the research findings are contextual, it is fair to assume that the findings from this study are based on enough variations in data (Table 1) so as not to be entirely contextbound; thus, they are transferable to other similar contexts. Further research is needed in order to improve the nursing
Young children and the consequences of NRMP care of young children during NRMPs, such as examining how young children perceive the support given to them during NRMPs.
Acknowledgments The authors would like to thank the children who participated in this study. The authors have no conflicts of interest. Funding to conduct this study was received from the University of Borås, Sweden.
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Consequences of Needle-Related Medical Procedures: A Hermeneutic Study With Young Children (3–7 Years) Katarina Karlsson PhD Student a,b,⁎, Ingela Rydström PhD a , Maria Nyström (Professor)a , Karin Enskär (Professor)b , Ann-Charlotte Dalheim Englund PhD a a
Faculty of Caring Sciences, Work Life and Social Welfare, University of Borås, Borås, Sweden Department of Nursing Sciences, CHILD Research Group, School of Health Sciences, Jönköping University, Gjuterigatan 5, Jönköping, Sweden b
Received 26 January 2015; revised 8 September 2015; accepted 16 September 2015
Key words: Younger children; Lived experiences; Consequences; Needle-related medical procedures; Caring science; Reflective lifeworld research; Lifeworld hermeneutic
Background Needle-related medical procedures (NRMPs) are often frightening and cause children anxiety and pain. Only a few studies have examined the perspectives of younger children. More knowledge is needed about younger children's experiences in caring situations such as NRMPs. Aim: The aim of this study was to explain and understand the consequences related to NRMPs from younger children's perspectives. Methods: Participant observations and interviews with younger children who had experienced NRMPs were analysed using a lifeworld hermeneutic approach. Results: Experiencing fear is central for younger children during an NRMP and interpretation of its consequences formed the basis for the following themes: seeking security, realizing the adult's power, struggling for control, feeling ashamed, and surrendering. A comprehensive understanding is presented wherein younger children's experiences of NRMPs vary across time and space related to weakening and strengthening their feelings of fear. Conclusions: Awareness is needed that adults' power becomes more obvious for children during an NRMP. Children's surrender does not necessarily imply acceptance of the procedure. Providing children with opportunities to control elements of the procedure creates a foundation for active participation, and vice versa. © 2015 Elsevier Inc. All rights reserved.
CHILDREN ARE A vulnerable group in society (HewittTaylor & Heaslip, 2012); they are also vulnerable when they need care as patients (Coyne, Hayes, & Gallagher, 2009). Medical procedures have been found to cause fear, anxiety and pain (Blount, Piira, Cohen, & Cheng, 2006; Ives, 2007; Young, 2005). The child's previous experiences of health care are vital because it can either increase or decrease the child's fears in ⁎ Corresponding author: Katarina Karlsson, PhD Student. E-mail address: [email protected].
http://dx.doi.org/10.1016/j.pedn.2015.09.008 0882-5963/© 2015 Elsevier Inc. All rights reserved.
relation to needle-related medical procedures (NRMPs). Earlier painful experiences can act as factor of distress (Noel, McMurtry, Chambers, & McGrath, 2010; von Baeyer, Marche, Rocha, & Salmon, 2004). Children between 3–7 years of age may perceive health care as something to fear since fantasy tends to dominate their thinking. Children may fear needles because of their undeveloped sense of body integrity, and they may also fear mutilation. They may perceive needle procedures as a punishment for doing something wrong (Bibace & Walsh, 1980; Koopman, Baars, Chaplin, & Zwinderman, 2004; LeRoy et al., 2003).
2 Researchers have noted that there has been a lack of research on the perspectives of younger children as patients (Irwin & Johnson, 2005; Kortesluoma & Nikkonen, 2006; Kortesluoma, Nikkonen, & Serlo, 2008); instead, research has focused on the perspectives of professional caregivers or parents (Jonas, 2003; Twycross, 2002; von Baeyer & Spagrud, 2007). However, recently the voices of younger children have been better represented in research showing that some interventions, such as injections and other needle procedures, cause them to feel fear (Kettwich et al., 2007; Salmela, Salanterä, & Aronen, 2009; Taddio et al., 2012). Children also experience the fear of pain, fear born of fantasy, fear due to a lack of information and fear of unfamiliar environments (Salmela, Aronen, & Salanterä, 2011; Salmela et al., 2009), as well as the fear of being separated from their parents (Aldiss, Horstman, O'Leary, Richardson, & Gibson, 2009; Salmela et al., 2011; Salmela et al., 2009). Bird and McMurtry (2012) and Cullone (2000) describe patterns of fear development. Bird and McMurtry (2012) describing children's fear as “a form of a negative affect that has been defined as a reaction to a real or perceived threat and is considered an adaptive part of child development” (p. 527). Negative events, such as being afraid, may increase the perception of pain (Bird & McMurtry, 2012). In this present study, investigations or actions involving needles are defined as NRMP. These procedures are used to prevent illness, for diagnostic purposes and to perform treatment (c.f. Uman et al., 2013; Uman, Chambers, McGrath, & Kisely, 2006). In Sweden, parents' attendance and participation are considered vital when younger children are afraid and in need of care (c.f. European Association for Children in Hospital (EACH) [EACH], 2006), and caring actions have been found to be characterized by attendance and participation (Karlsson, Dalheim Englund, Enskär, & Rydström, 2014; Karlsson, Rydström, Enskär, & Dalheim Englund, 2014). National NRMP guidelines in Sweden advocate for combining treatment with a positive caring approach (Medical Products Agency, 2014). Knowledge of younger children's experiences of health care, particularly in relation to actions that may cause them fear, anxiety or pain, is needed to further understand their reactions. There is a gap in the literature concerning the consequences of NRMPs from the perspective of younger children's experiences. Thus, this study sought to give children in the 3–7 year age group a voice so they can share their experiences; ultimately, its goal is to improve care during NRMPs. Therefore, the aim of this study was to explain and understand the consequences related to NRMPs from younger children's perspectives.
Methods Design A lifeworld hermeneutic approach inspired by Gadamer (2004) and Ricoeur (1976), as suggested by Dahlberg, Dahlberg, and Nyström (2008), was chosen for this study.
K. Karlsson et al. This approach builds on a lifeworld perspective by addressing the phenomenon which is the consequences related to NRMP as experienced by younger children in Swedish health care. According to Dahlberg et al. (2008), lifeworld research requires the researcher to maintain an open and critical approach throughout the entire research process. No predetermined hypothesis or other interpretive foundations are established in advance. Therefore, the research team in this study practiced openness towards the phenomenon and tried, as much as possible, to avoid influences from previous experiences and knowledge. Attention was focused on what was unexpected in the data, what Gadamer (2004) calls “the otherness.” This means being aware of one's own pre-understanding in order to be able to see what is new regarding the phenomenon instead of only confirming what one already knows. In order to suggest explanations for latent meanings in the data, tentative explanations were validated against specific criteria (Ricoeur, 1976), which are described below.
Children as Participants Data collection was conducted at four different pediatric health care settings located in south-western Sweden: a pediatric primary care services unit (caring for children with different medical diagnoses); a pediatric inpatient care unit (one unit divided into two departments that care for children with all diagnoses); a pediatric outpatient care unit (caring for children with all diagnoses except ongoing infections); and a pediatric specialist clinic (caring for children with different medical diagnosis). All four units treated patients up to the age of 18. Twenty-one children participated in the study. They were recruited by nurses working in these settings in the immediate days before the NRMP or on the day of the procedure. The inclusion criteria were: the children had to be aged 3–7 years, they had to participate in an NRMP, they had to understand and speak Swedish, and their parents and nurses had to have given informed consent. Children with an acute or life-threatening illness at the time of the NRMP were excluded from the study. The 21 children who participated in the study varied in terms of their age, diagnosis and sex and they all had a variety of experiences related to NRMPs (Table 1).
Data Collection Data collection was performed through participant observations documented as video-recorded observations and/or field notes as well as meaning-oriented interviews that were audio recorded and transcribed verbatim. Data collection began when the child entered the room where the NRMP was to be performed. During the NRMP, the observer stood behind the camera without directly participating in the procedure but answered questions or assisted if needed. Field notes were written immediately after the NRMP was completed.
Young children and the consequences of NRMP
3
Table 1 Demographics, diagnoses and treatment-related data for the children Demographics of the children (n = 21) Age of the children (years) 3 4 5 6 7 Sex of the child Female Male Parents present during NRMP Mother Father Both mother and father Type of visit Not scheduled Scheduled Diagnosis Allergy Cancer Gastro and bowel disease Genetic disease Infection Nonspecific Obesity Rheumatoid arthritis Tonsillectomy Reason for visit Investigation Infection Treatment (e.g. cancer, RA) Scheduled surgery Type of NRMP Capillary blood sample Venous blood sample Intravenous cannula insertion (IV) Needle insertion into central venous port Injections into the joints Skin test for allergies Pharmacological treatment Inhalation/Sedation with N2/02 Topical anaesthesia Emla® Topical anaesthesia Rapydan® (Children received pharmacological aids according to applicable routines within each unit) Time for the procedures NRMP Interval Mean Median Interviews Interval Mean Median
n 4 3 5 6 3 11 10 14 3 4 5 16 3 4 1 1 3 4 1 2 2 8 3 8 2 5 5 3 5 1 2 2 13 1
Minutes 4–30 11 10 9–60 36 37
After the NRMP was performed the children were interviewed. However, during the first six interviews, participant observations were only documented by the researcher's field notes. After receiving additional ethical approval, 15 interviews were video-recorded. This approach was added in order to capture the nuances of the phenomenon, such as the children's facial expressions, gestures and posture, as described by Sommer (2003). The video-recorded observations during the interviews were conducted at the same time as the interviews and field notes were written as soon as the interviews were completed. The interviews were preceded by a preparatory phase with the intention of familiarizing the child with the setting, an approach that is also described by Irwin and Johnson (2005) and MacDonald and Greggans (2008). This allows the interviewer to form an opinion about the child's level of maturity and current condition in order to formulate questions in an appropriate way (Spratling, Coke, & Minick, 2012). An example of an initial question is: “Would you like to tell me about the needle stick?” To obtain a deeper understanding, questions like “Can you tell me more?” and “What happened?” were asked. Since younger children may find it difficult to talk about their experiences when a direct question is asked, different tools were used and the interviews were conducted with help of play. To facilitate the children's ability to answer questions, they were asked to look into a ‘secret bag’ that contained dolls, stuffed animals and medical equipment. Using these different aids, the children engaged in play-acting to demonstrate what they had experience during the NRMP; meanwhile, the interviewer asked them questions. This method has been successfully used by Aldiss et al. (2009) and Gibson, Aldiss, Horstman, Kumpunen, and Richardson (2010). The interviews with children could also be done by letting the doll indirectly ask the child a question. This approach to asking questions has also been described by Aldiss et al. (2009) and Darcy, Knutsson, Huus, and Enskär (2014). Finally, in order to stimulate further reflection, the video-recording of the NRMP was shown to the child. The data collection process ended when the child left the room.
Data Analysis Video-recorded observations, sequences from transcribed video-recorded observations, field notes and meaningoriented interviews were used for the data analysis. Based on approach suggested by Dahlberg et al. (2008), all the data were carefully read and viewed until familiarity with it as a whole was achieved. The interpretation phase began by searching for and identifying the meanings in the data in relation to the aim of the study. Similarities and differences were identified, and the data were grouped into themes representing the meanings of the phenomenon. Themes were tentatively interpreted until everything related to the aim was included in the analysis. These groups of themes were compiled as preliminary interpretations and validated by using the following criteria suggested by Dahlberg et al. (2008) and Gustavsson (1996):
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The interpretation's source lies solely in the data, not in the researchers' pre-understanding. • An interpretation that leaves a significant variety of data unaccounted for is considered to be weak. • No contradictions should arise between the data and the interpretation. Throughout this part of the work, the analysis constantly moved back and forth between the material, described in the beginning of this section, and the preliminary themes. This was done to ensure that the interpretations, as far as possible, emphasized substantial meanings of the phenomenon, which is the consequence related to an NRMP as experienced by younger children. During this evaluative process, some tentative interpretations were rephrased or excluded. Five interpreted themes remained, each of which corresponded to the aim of the study. Finally, all of the themes were compared to reveal a meaningful common denominator that is presented as a comprehensive understanding. This comprehensive understanding is the main interpretation of the study, the highest level of abstraction that will lead to a well-informed proposal of how to understand the phenomenon. Level of abstraction is linked to the principle of going from the parts (interpretations of the children's report) to the whole (video-recorded observations, transcribed videorecorded observations, field notes and interview data), and vice versa. During this part of the analysis, the aim was to reach consistency concerning the pattern of the interpretations. During this analytical process, attention was focused on the meanings in the data and why these meanings emerged (Dahlberg et al., 2008). For this step in the interpretation process, the following validity criteria were added: •
No data of relevance to the aim of the study may be discarded due to lack of congruency with the main interpretation. • The tentative interpretations (the part) shall be related to the main interpretation (the whole), and vice versa (Dahlberg et al., 2008; Gustavsson, 1996).
Ethical Considerations The Helsinki Declaration (2008) was followed. Ethical approval was obtained from the Regional Ethical Review Board of Gothenburg (Dnr 724–10). Additional ethical approval to perform the video-recorded observations during the interviews was also obtained (TO99-12). All of the children received verbal information about the aim of the study, their voluntary participation and the possibility of withdrawing at any time without affecting their care; they were also assured that their confidentiality would be maintained, as described by Morse (2007). The children's assessment was obtained, as defined by Ford, Sankey, and Crisp (2007). The children's parents received verbal and written information with the same content and they gave their written consent. The contact details for the interviewer and
the supervisors' were provided if the children or their parents felt the need to talk about it.
Results Fear is a consequence that emerged through all of the themes and it is on this basis that the themes should be understood. The most salient findings from the data are the fear of pain related to the sharpness of the needles, the squeezing of fingers to obtain blood samples, the removal of the anaesthetic patch, and stasis, among other things. Less concrete, yet more frightening than the pain itself, is the fear of the unknown that arises from being unfamiliar with the procedures, the people present or the environment. The five interpreted themes describe different consequences of the children's experiences, culminating in a comprehensive understanding: seeking security, realizing the adult’s power, struggling for control, feeling ashamed and surrendering. Excerpts from the data show the connection between the data and the interpretation (see the validity criteria presented above).
Seeking Security When fear is experienced during NRMP, children seek security from an adult; and it is primarily parents who provide that security. The search for security is expressed verbally, through eye contact or in the search for physical intimacy. Parents' speaking on behalf of their child while in contact with staff seems to satisfy the child: Mom: "Is it possible to put another patch on as he thinks this one is hard to remove?" The child is crying and sniffles, saying: "Yes. I don’t want this annoying one" while watching Mom, looking grateful [Observation NRMP, five-year-old boy].
Seeking security is also amplified when another adult affirms the child's feelings: Nurse: "It's actually okay to be afraid. It actually hurts a little; it did hurt a little, didn't it?" Child: "Yes". He looks satisfied in getting support for his feelings [Observation NRMP, three-year-old boy]. Seeking security when afraid does not necessarily mean that the feeling of security is achieved. Security from the adult can be difficult to obtain if a parent is anxious, restraining the child and urging the staff to perform the NRMP: Mom: "Just do it" [the needle stick]. She brings the boy’s hand towards the nurse. The child begins to cry, trying to hide his hand. Mom: "Just do it". Child: "No". He looks sad and disappointed [Observation NRMP, four-year-old boy].
If adults do not believe the child's feelings, they may say that it is "not so bad" or "does not hurt.” The parents' own nervousness can also manifest in the way he or she talks about how capable and strong the child always is, making it
Young children and the consequences of NRMP difficult for the child to act in any way other than that which the parent just described. The parents' fear due to the child's illness can make them worried and sad during the procedure and this can encourage feelings of insecurity in the child: During the interview the child asked. “Mom, why did you cry before?” [Interview, six-year-old girl]. It is also difficult for the child to experience security from staff if they, for example, say: Nurse: "Are you big enough to sit by yourself or do you want Mom to sit beside you?" The child looks down at the floor, his arms are hanging beside the body, and he whispers "Mom" [Observation NRMP, four-year-old boy].
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Struggling for Control Struggle for control is achieved by being curious, asking questions, watching the nurses or telling them what to do: The nurse is about to pull the needle out from the central venous port. Child: "But, we must also have a dry compress?" [Observation NRMP, seven-year-old girl]. Other ways of struggling for control are either watching the procedure or blocking one's view with a book, breathing consciously and being relaxed, or intentionally using distraction techniques. Struggle for control while being cared for is also exemplified by concentrating intensely followed by a shift towards relief: The child asks with a low, whiny voice: "Will it hurt?”
Realizing the Adult's Power
Nurse: "Well, now you're numb" [topical anaesthetic].
Fear becomes obvious when the child understands that it is impossible to negotiate whether or not the NRMP will be carried out. The child realizes the adult's power to make all of the important decisions. The child's autonomy is limited to smaller practical issues, such as choosing which finger to use for the needle stick or whether to sit alone or on the parent's lap. When staff make light of an NRMP, the child's trust in them may be affected. Describing a skin test for allergies as feeling ‘tingling’, in spite of the fact that the procedure still involves a needle, may affect that level of trust. Being afraid and exposed to the adult's power may lead to protest, as when parents claim to have interpretative privilege, i.e. when parents claim that they know what is best for the child. These protests can take the form of short, barely audible sounds or shouting, screaming, armwaving and kicking. Reacting with protest may lead to problems with the child participating in the procedure as there is a risk of being restrained. Then the fear and powerlessness become a reality:
The nurse put in the intravenous cannula. The child looks up, exhales, and smiles "It feels like nothing" and looks relieved
They held my finger too tightly and they yelled too much // That’s what I don’t like.... They hold me … But she did not have to hold so tight …I wanted to go home [Interview, six-year-old girl]. When fear is a consequence of the adults' power, play can help the child process difficult experiences, such as being restrained during procedures. Some elements of play can probably be understood as a way to show, unconsciously, how the child experiences being exposed to the adult's power. With the help of play, wherein imagination seems to play a prominent role, the child may express his or her feelings, as in the following example: The child is playing violently with the doll and sticks a needle in the doll’s face. ”That's fun!” she shouts, talking about the doll and laughing [Observation interview, six-year-old girl].
The child's request to perform the procedure on staff, siblings or a parent may serve a similar purpose. Play can also be understood as a way of trying to achieve control.
[Observation NRMP, six-year-old girl].
In this example, the struggle for control seems to have succeeded. However, when struggling for control fails, it can lead to panic. The following is an example in which the struggle for control has failed: The child is held down by the parent while the nurse inserts the needle. The child is sweating, kicking, and screaming; hitting the nurse in the stomach; crying and trying to get away [Observation NRMP, five-year-old boy].
When children are afraid, play seems to help them regain control or prepare for an upcoming NRMP. Maintaining control through play is evident when the conversation goes through the parents or a doll, thus facilitating verbalization of the child's experience: Interviewer: “What is scary about needles?” Child: “I’ll whisper to her [the mother] so she can tell.” The child leans against her mother and whispers quietly. Mom: “The needles are sharp and they really hurt.” The child nods [Observation interview, six-year-old girl].
When strategies for controlling the situation fail, it becomes difficult to talk about or listen to others speaking about what has happened after the procedure. Difficulties in working through and reflecting on what is frightening do not promote feelings of control.
Feeling Ashamed When fear occurs in the presence of unfamiliar people, situations or environments, and if the child fails to control
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that fear, feelings of shame may occur. This may be expressed as difficulty in answering questions or in selecting a small sticker or toy from the staff. Feeling ashamed can manifest in shyness; for instance, turning the head away after the procedure: The child buries her face in her mother's throat, looking down at the floor. It seems like she is trying to hide her face. She looks ashamed. [Observation NRMP, seven-year-old girl].
Another example is when a child looks at the video-tape recording from the NRMP showing that he was sad and cried and kicked: Child: “Fast-forward a bit.” Mom: “Is it hard to watch?” The child looks down, looks as if he is ashamed and says with a lower voice: “Yes, you can fastforward some more” [Observation interview, four-year-old boy].
Other signs of shame following episodes of crying and loud protests include meeting subsequent questions regarding the experience with silence, talking about other things or changing the subject. Being ashamed also seems to arise when adults talk to each other about the child's behavior when afraid or a sibling's crying because of the child's inability to control himself or herself during the NRMP: Mom: "Look Alex, now Karin is terrified because you are crying." The child stops crying. His entire body is shaking as he tries to restrain himself: "It did really hurt.” He looks down and seems ashamed. He cannot stop crying [Observation NRMP, four-year-old boy].
Being ashamed is also observed when a child first says one thing but, upon questioning by an adult, may change his or her opinion: Child: "It hurt.” Mom responds with a firm voice: "Yes, but it wasn’t that bad." The child looks down at the medal he received for bravery and responds with a low voice: "Not so bad,” looking ashamed [Observation NRMP, four-year-old boy].
Surrendering Surrendering to treatment is the process of the child realizing the ineffectiveness of panic-driven active refusal and, instead, passively receiving treatment. Panic is the worst-case scenario, which can occur when the fear is extreme, resulting in loss of self-control, but which upon easing as a result of decreased fear, may lead to surrender. One child explains his thoughts about the NRMP that may explain why he did not surrender and continued to feel panic: “If you smash the part which produces blood, then you have a cardiac arrest and you die anyway.
The heart will stop making blood and if it does not produce blood there won’t be enough blood to the brain in order to keep the body going” [Interview, seven-year-old boy].
Surrendering to the NRMP may be the only option to regain control when the child is not so afraid that panic dominates. In order for this to happen, the child must, to some extent, adapt to the situation. Adaptation is preceded by gaining control of the only aspect that the child can decide on: his or her own behavior. Yet adaption is not only experienced as positive. It can build on the adults' expectations, acceptance or previous situations where the experiences of the NRMP have been worked through. In time, hopefully new and less frightening experiences of NRMPs will occur. This will lead to a gradual adaptation and, possibly, the child will become accustomed to NRMPs. Another sign of surrendering is to say, spontaneously, that procedures do not hurt and that the next time there is no need for the child to be afraid. The child is trying to convince himself or herself that the NRMP is manageable. Paradoxically, the opposite can be demonstrated in play as a way of working through frightful experiences. The child can act out situations where he or she has felt forced to surrender, as in the following example when the child is playing with a doll after the procedure: Child: [Shouts at the doll]. “You must be strong” Interviewer: “What happens if one is not strong then?” Child: “Then you're screaming and crying.” The child looks upset and angry [Observation interview, four-year-old boy].
Surrendering and adapting to a situation can also be shown when repeated NRMPs can result in developing routines during the procedure. These routines may consist of nurses doing things in a certain way directed by the child while, for example, simultaneously using a metaphor: When the nurse put the needle in the central venous port, the child says with a singing voice, "slow as a snail when it slides" [Observation NRMP, five-year-old boy].
Adapting to the situation is also accomplished by enabling the child to complete certain actions, such as removing a local anaesthetic patch or swabbing the area before the needle stick. When this works well, some NRMPs can be done without help from parents. Once the child is accustomed to the NRMP, it is easier for him or her to see the connection between the sampling and the illness, or that the topical anaesthetic is used to reduce pain. The child can also begin to understand the number of NRMPs remaining in the treatment.
Comprehensive Understanding Younger children's experiences of NRMPs vary across time and space related to their weakened and strengthened
Young children and the consequences of NRMP feelings of fear. The fear is reinforced when imagined expectations about something painful and scary dominate and it is weakened if the child, at least to some degree, succeeds in controlling the situation. Play has an important role related to moving towards or away from fear. The child's play can also give the adult a picture of the child's expectations and imagination before the NRMP or the experiences of the NRMP afterwards. This enables the adult to understand and help the child address his or her feelings in words. Play and language make it easier for the child to understand the situation, and when it succeeds it seems to be a step in the process of working through feelings. When the child seeks security in an adult, the adult's response becomes extremely important. In the absence of security, it is difficult to overcome fear, which may manifest in the form of open protest. The protest may initially be an attempt to gain control of the situation, but it can easily grow stronger and result in the loss of selfcontrol, which creates a risk that the child will be restrained during the NRMP. This makes the child feel ashamed and humiliated as well as powerless, having lost the right to control his or her own body. Experiences of having succeeded in mastering previous or current NRMPs can be seen to facilitate reconciling oneself to the adult's power, especially if the adult can convey to the child that he or she wishes the child well. This makes it possible for the child to surrender, and to some extent reconcile, to the procedures leading to self-control and opportunities for participation. The reverse is also true: participation in decisions about how to carry out an NRMP promotes self-control. As a result, the child can take advantage of the opportunities available and desire to determine how the NRMP should be performed.
Discussion This study indicated that fear is an outcome of NRMPs and it permeates children's experiences. Therefore, it is important to understand the children's struggles in order to reduce their fear. This struggle relates to their previous experiences of NRMPs and, in this context, it is vital to realize the impact of play and imagination. Children's imaginations seem to be important for making the NRMP intelligible and for processing the procedure afterwards. For some children, imagination seems to take over and realistic boundaries become blurred. If this happens, it is not to the child's benefit and it may contribute to a loss of control. As stated by Bowlby (1988) and further developed by Walsh, McGrath, and Symons (2008), parents represent security; experiencing pain and anxiety and being at risk of being separated from parents may affect a child's attachment behavior. This is in line with Karlsson, Dalheim, et al. (2014) who found that parents strive to maintain their role as a secure base so that their own fears do not affect the children's ability to feel secure during procedures. When care is provided, it is necessary that staff members be aware of the importance of parental involvement. Earlier studies have found great variations in staff preferences regarding parental involvement during medical procedures
7 (Boudreaux, Francis, & Loyacano, 2002; Waseem & Ryan, 2003), but Piira, Sugiura, Champion, Donnelly, and Cole (2004) concluded that parents should be given the opportunity to attend. The fact that parental involvement is important is noted by Karlsson, Rydström, et al. (2014b), but the specifics must be based on the parents' ability, which has also been noted by McCarthy and Kleiber (2006). Therefore, staff need to be aware that parents may have been subjected to procedures during their childhood that may have caused them problems; thus, staff may need support to facilitate parental involvement (Karlsson, Dalheim, et al., 2014). This is made possible by maintaining an open attitude and asking parents about their fears and previous experiences. In this study, the children seemed to be especially frightened by the power that adults hold when restraint is involved. Whether or not to restrain a child for an NRMP is a complex decision; other measures have to be considered. For instance, taking a break and letting the child recover, providing additional information through age-appropriate play or using pharmacological sedation combined with pain relief are other possible options, provided that the child is not in a life-threatening situation that requires an immediate NRMP. Nothing in this study indicated that restraint could be of any benefit from the child's perspective. Furthermore, other studies on children restrained during procedures (Dresser & Melnyk, 2003; Harder, Christensson, Coyne, & Söderbäck, 2011; Pearch, 2005) have indicated that if procedures are carried out against the children's wishes, in the words of Söderbäck (2013, pp 7–8), “forced engagement and resigned engagement” can result. If restraint during NRMPs leads to intense pain and anxiety, previous research has noted that problematic negatively exaggerated memories may result (Kennedy, Luhmann, & Zempsky, 2008; Noel et al., 2010) leading to, for example, needle phobia and medical care avoidance (Noel et al., 2010; Taddio et al., 2009). Direct changes in the pain system may occur (von Baeyer et al., 2004; Walco, 2008), which may lead to the above-mentioned problems. When NRMPs are performed against the children's wishes and restraint is needed two major issues should be considered. First, it is important to reduce the child's suffering during the actual procedure and, second, the actions taken to minimize problems during the procedure can counteract future problems, also described by Walco (2008). The results from the present study suggested that when struggling for control, children strive to manage the procedure by counteracting their fear in different ways. This may indicate that even young children are competent to foresee that which is not immediately present. Such a suggestion is congruent with Stern (1985) who has argued that even infants and young children are pre-logic and coacting individuals. Kortesluoma et al. (2008) has added that young children have a refined understanding of illness and hospitalization. This study indicates that young children have an inherent capacity to desire to understand the NRMP. They need the
8 procedure to be manageable; they want to participate in decisions (c.f. UNICEF, 1989), thereby making the procedure comprehensible. Thus, it is the staff's responsibility to provide age-appropriate information, as described by Edwinson Mansson and Dykes (2004), based on the individual child's needs so that the child can act within his or her own competence. Being ashamed prevents all such possibilities. This may occur when children are not able to act in the way in which they believe adults want them to behave. According to von Baeyer et al. (2004), children who feel ashamed or embarrassed in the presence of unknown people and may feel that pain “is socially undesirable” (p. 244) may react by not voicing their pain during NRMP. According to Erikson's life span theory, shame is a stage that belongs to the 1½ -3 year age range in a child's life (Erikson, 1975). These stages are built upon a hierarchical order and the age ranges only reflect a rough approximation as they are based on large individual differences in child development (LeRoy et al., 2003); furthermore, during illness and stress (such as NRMP), regression may occur (Piaget & Inhelder, 1969). This suggests ‘feeling ashamed’ as the most likely feeling children experiences during NRMP. One way for staff to counteract feelings of being ashamed is by being genuine with and affirming of children, not trying to change the children's opinion, and by taking children seriously, for example, when they say they are afraid, sad or in pain. Children's loss of self-control due to extreme fear appears to mark the point at which the NRMP experience has become incomprehensible and frightening and the children's search for a sense of security has been fruitless. Consequently, we can conclude that the adults' task around an NRMP is to ensure that the weighing pain is not weighted in a negative direction. Accomplishing this requires staff awareness regarding management of NRMPs so as to reduce harm to the child while performing a procedure that is often vital for continued health.
Methodological Considerations The methodological issues associated with research on/with younger children include that it may be challenging for an adult researcher to comprehend the world in the way in which a child would experience it. Another issue is that children's use of language is different from that of adults (Punch, 2002). Therefore, as Holland (2009) noted, is it vital to consider ethical issues when conducting research that involves children. One way to ensure that children's vulnerability is examined in research is to include children's perspectives as early as possible in the research design. Based on the above reasoning, it is advantageous to use a participatory design, like the one used in this study that utilizes child-focused techniques, such as play, dolls and medical equipment. Similar methods have been successfully used previously (Aldiss et al., 2009). Working in this manner, this study enabled 21 young children to express their experiences about NRMP.
K. Karlsson et al. Previous studies have investigated the ability of children, ranging in age from 3 to 4, to express their feelings about their experiences. Docherty and Sandelowski (1999) and Instone (2002) have established that children as young as 3 can participate in interviews. Howard (2003) has indicated that a 3- or 4-year-old may report about experiencing pain and identify its location and characteristics. Alderson (2007) added that a child's previous experiences are as important as his or her age and maturity level. In this study, some of the younger children had limited verbal ability. This required sensitivity to the child's choice of words and expressions, using complementary ways to communicate; thus, participant observations were also used. During the first six interviews only field notes were used. It is difficult to know if this has affected the outcome. However, one assumption is that if only field notes had been used in all 21 interviews the children's opportunity to express themselves about NRMP would have been restricted. The children were recruited with assistance from nurses. It has not been identified which children the nurses chose not to ask, nor which children declined to participate. It is also difficult to determine if this selection process affected the results, but on the basis of the variations in the data, it does not seem to have had a negative impact on the findings. The children received pharmacological aids according to applicable routines within each of the pediatric units. Since topical anaesthesia is not used with a capillary blood sample and skin test for allergies, seven of the 21 children in this study received no pharmacological treatment during the NRMP. The comments from the children seemed to be similar irrespective of the use of pharmacological means. The participant observations and interviews were sometimes perceived as quite cluttered. Yet, as Irwin and Johnson (2005) have noted, it was about learning to “go with the flow” (p. 829). Parental presence during interviews is important, also noted by Irwin and Johnson (2005), not only to act as the child's secure base, but, to also assist the child during the interview as younger children's normal communication is more or less facilitated through their parents (Aldiss et al., 2009). The majority of children who were invited to play with dolls, stuffed animals or other play materials seemed to feel that doing so facilitated the interview. Aldiss et al. (2009) have claimed that the use of puppets may reduce the balance of power between the child and the researcher. Video-recorded observations may affect the child's integrity and it was important that there was sensitivity to any indications that the child no longer wanted to participate. Two children who had been restrained during the NRMP could not handle seeing themselves on the video during the interview and, subsequently, the film was turned off. Even if the research findings are contextual, it is fair to assume that the findings from this study are based on enough variations in data (Table 1) so as not to be entirely contextbound; thus, they are transferable to other similar contexts. Further research is needed in order to improve the nursing
Young children and the consequences of NRMP care of young children during NRMPs, such as examining how young children perceive the support given to them during NRMPs.
Acknowledgments The authors would like to thank the children who participated in this study. The authors have no conflicts of interest. Funding to conduct this study was received from the University of Borås, Sweden.
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