A total of 16 children and 16 parents shared their experiences of long-term needle injection use at home. Of these, seven children and eight parents were interviewed individually, and nine children and eight parents participated in focus groups. There was variation in rheumatic diagnosis, medication, and duration of injection-based treatment (from 4 months to 15 years). Participant characteristics have been presented in Table 3, and the source of each quotation has been marked as II (which indicated an individual interview) or FG (which indicated a focus group). Main themes have been illustrated in Fig. 1.
Challenges
Children and parents reported challenges associated with regular home administration of needle injections. Their stories included physical pain and emotional distress related to the injections and other painful procedures, like blood samples, joint injections, and peripheral vein cannulation (PVC). Additional challenges were connected to the handling of equipment and the prevention of side effects of the drugs.
Most parents felt insecure when they became responsible for the medical treatment of their child after discharge from the hospital, which was illustrated by the following:
“I was thinking, ‘Oh my god – this is a huge responsibility!’ I didn’t feel competent. I have a sister who is a nurse; she gave me some advice. I thought this was unjustifiable; it should have been a nurse doing this.” (Parent of a 14-year-old boy, II)
Many parents reported that their handling of the injections at home was hardly ever explored at regular follow-up consultations. Several parents also mentioned a lack of psychological advice on how to assist their child’s coping with pain and fear.
Children were mainly concerned about how they could avoid focusing on the needle sticks. Most children had become accustomed to the injections but reported that they still feared the moment before the needle stick even if it did not hurt much. Parents were frightened by the prospect of inserting a needle into one’s child, although a father described this as being easier than expected, “As sliding a warm knife through butter.” Children and parents compared the experience with other needle procedures. Most children rated blood sampling as more painful than subcutaneous injections, depending on who performed the test.
“They are not so skilled with children at the local office. It was very painful, and I usually don’t mind blood tests at all when performed by a known person.” (11-year-old child, FG)
Many children stated that being given sufficient information and being able to decide some parts of procedures increased their trust in those performing painful procedures. Bad experiences affected children and parents for a long time, especially if the child had been physically restrained during the procedure.
“It almost felt like abuse, when one person held him down, another stretched out the hand and…. he still doesn’t like PVC! But he has gone a long way up until today - just need a warm hug and to squeeze my hand…” (Parent of 14-year-old child, FG)
Many parents reported that they admired their children for their willingness to receive needle injections, but they also talked about the difficulty of interfering with situations where HPs pressed hard to get a procedure done. One child had developed severe needle phobia after a bad experience and had refused the recommended subcutaneous treatment. Her mother felt miserable about being unable to assist her child. At the beginning of home treatment, some parents had used physical restraint to carry out the injections but later realized how this traumatized both the child and themselves, and they could not continue.
Parents talked much about their efforts in handling equipment, preparing for the treatment, and implementing it. Their struggle to transfer a small drug volume from one syringe to another or to hold the correct grip sometimes resulted in spoiled drugs. Many said that they lacked written information and had to rely on their memory of oral instructions given by nurses at the hospital. Most children, however, stated that they could remember details from the training session, “I learned that we should not stick the needle straight down, but slightly slanted” (12-year-old child, II). Such statements indicated children’s quick learning and high self-confidence concerning technical equipment. Some parents told how their child even guided them at home.
“She (our daughter) looks after us, that we don’t inject too slow or too fast…and told me once, ‘Mama, it’s due to the side effects we must take the injection in the evening.’ She remembers everything!” (Parent of 12-year-old child, II)
Concerns about drug-related side effects were especially highlighted by children in focus groups. They stated that oral and subcutaneous methotrexate could cause nausea, vomiting, and tiredness. Some said that they had started feeling sick when observing something yellow, smelling or tasting anything that reminded of the drugs, or even just thinking about them. Children who were interviewed individually did not talk explicitly about such side effects, but their parents reported that precautions were taken to prevent potential discomfort. Some parents uttered their worries and mixed feelings about the drugs.
“After all, these medicines are no good. I panic when I read about the scariest side effects. However, getting better prognosis for the disease is positive.” (Parent of 9-year-old child, II)
Motivational factors
The children had all suffered from pain, joint stiffness, reduced physical activity, and other discomforts to different degrees before being diagnosed. Many parents described the relief they felt when they realized that their child suffered from a treatable disease, and this motivated injection treatment. Their conclusion was that “this is something you just have to do.” Children’s experiences of improvement after starting treatment increased parents’ and children’s motivation to continue. Some children reported that a lack of effects or bothersome side effects decreased their motivation to continue.
“I have taken injections at home before, but when the drug made me very sick, we had to quit (and continue with intravenous infusions of another drug).” (13-year-old child, FG)
Another girl described how she felt psychologically tired of taking injections when she lost faith in the effect of the treatment. More examples of quotations on reported experiences of drug effects have been shown in Table 4.
Table 4
Children and parents’ reports of effects and side effects of the medication
Drug effects
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Child’s quotation
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Parent’s quotation
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Positive effect
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“ The medication is very helpful; I’m less stiff, no pain, I’m able to do gymnastics and play handball” (12-year-old child, II)
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“I’ve got a brand new girl! It happened fast, she is very happy and fresh. She felt useless (before). “ (Parent of 12-year-old child, II)
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Uncertain effect and side effects
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“More energy, but not as much as expected. I was nauseous and dizzy” (14-year-old child, II)
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“ He was better in the body, could perform more, but was nauseous and had a headache” (Parent of 14-year-old child, II)
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Effect and side effects
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“No” (9-year-old child, II)
(she had side effects of steroids)
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“The results from blood samples and MR are positive. She is much stronger, she couldn’t keep her head straight” (Parent of 9-year-old child, II)
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Less effect than expected
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“I have had a different effect on different drugs. When having the good effect I could be with friends, join birthday parties and so on….” (15-year-old child, II)
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“It was easier when she was younger. It has been hard to find medication for her as an adolescent. She had a period where she didn’t want to take the injections – she had lost the faith in the medication.” (Parent of 15-year-old child, II)
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Abbreviations: II: Individual interviews |
Many children reported decreased pain and joint stiffness and had more energy to attend school and perform normal sports activities. The youngest children had no clear perception of treatment effects, but their parents reported effects based on their observations. Some parents focused on the fact that their child’s probability of having a normal life was determined by a positive treatment effect, as symptoms increased during periods of adjustment or during the discontinuation of medications.
“This is something we talk to her about – how it might have been without effective medication.” (Parent of 13-year-old child, FG)
Parents reported how they had worked systematically to create secure environments and routines to establish a good relation and cooperation during the procedure of needle injections. Children and parents agreed that children’s self-confidence improved over time, as children knew what was going to happen. This building of positive experiences was described as an important motivational factor.
In some families, only one of the parents performed the injections, either because the other parent did not like needles, or the child did not let them do it, which was illustrated by the following: “My mum is not allowed to give me the injection, I don’t trust her” (11-year-old child, FG). The father in this situation reported that of the two parents, he had spent the most time building a relationship during the first injections.
Routines and use of coping strategies
In addition to the use of routines and the building of confidence within each family, children and parents described numerous coping strategies to handle needle injections. Children and parents reported a shared experience regarding the establishment of routines and teamwork in the family. A typical example of this has been described in Table 5.
Table 5
A typical example of routines and teamwork described by one child and parent
Child’s quotation
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Parent’s quotation
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“I make everything ready and transfer 0.7 (ml) into another syringe. If there are bubbles, my mum has told me how to shake it away. I don’t dare to take the injection alone yet, mummy helps me with the needle stick and I push in the liquid. If I push too fast it’s more painful – but then I just take a break before continuing” (12-year-old child, II)
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“She cried a little bit the first few times, but I was clear and told her that this is something she has to do. Little by little she has learned her routines, by first preparing the equipment, and then by sitting down and breathing for a while saying; ‘I don’t like it, but I have to do it’ – and then I insert the needle together with her” (Parent of 12-year-old child, II)
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Abbreviations: II: Information from an individual interview |
Some children reported that having a friend, sibling, or grandparent present during the procedure decreased fear. They told how bystanders were impressed by their bravery and how they were proud of this. Some children and most adolescents preferred to do the injections on their own and were aware of the actions necessary to become independent, such as the following participant: “I said to myself, ‘You just have to endure this!’” (17-year-old child, FG).
They agreed that there was less pain when the injection site was in the upper part of the thigh and when the drug was tempered compared to other scenarios. Small children did not have the option to choose between different injection devices, while older children could select drug injections with either syringe or pen. Some preferred syringes, which allowed them to control injection speed, while others favored pens that completed the procedure quickly and in which the needle was invisible.
All families described how they adapted their everyday lives to minimize children’s treatment discomfort. Several children went to bed right after the injection, slept longer the following day, ate extra food, and adjusted their school and physical activities. Several children described their strategies in detail.
“I drink tea and have a hunger for orange. I get psychological nausea and like to reward myself with some candy, listen to music, or doing something cozy.” (17-year-old child, FG)
Coping strategies
Most children were familiar with topical anesthesia as a pharmacological tool for pain relief, but only a few reported a significant effect. Thus, most children managed without topical anesthesia. One girl always cooled her skin with an ice cube and considered this her primary strategy. No children recalled specific instructions for non-pharmacological coping strategies. Parents used prior knowledge and their own experiences, and some searched the Internet to find methods of assisting their child. Several useful coping strategies were discovered by chance.
“When I was going to have the injection, my favorite series was on the TV, and mom allowed me to watch.” (9-year-old child, II)
The most commonly used coping strategies have been exemplified in Table 6. All parents offered a wide range of distraction techniques, like looking away, watching television or an iPad, talking about something else, or squeezing their parents’ hands. Most children found it helpful to focus on something else. Some reported that having the opportunity to play a video game or watch television was helpful, even when they did not use this option. Others liked to be distracted during the needle stick even if they took part in the preparation.
Most children appreciated getting rewards like toys and chocolate, a nice Band-Aid with a picture on it, or a new sticker to put on a poster every time they received an injection. Children in focus groups had more experience with injections and recalled getting rewards in the beginning. Parents considered rewards a tool to negotiate with their child, and buying a hotdog in the shop at the hospital was a popular reward for completing a procedure. One father said they had used many “bribes” to persuade the child, but had to stop to be fair to the child’s siblings. Instead, the child was given the opportunity to choose an activity for the whole family, such as going to a movie, when she had received a specific number of injections.
Although negotiations and rewards were intended to provide children with control, some parents reported that this behavior delayed the procedure more than it helped the child’s coping. Gradually giving the child more responsibility was described as a better way for the child to gain control. Children wanted knowledge of the disease and needed a justification for the injections.
Some parents used metaphors, labeling the drugs the child’s best friend in helping them fight the disease. Several children had watched a video that showed a girl playing her favorite sports and living a normal life despite RD. The children found this video very helpful, and it also helped when explaining their disease to their peers. They would like to find similar videos on the Internet, which presented recommendations for the implementation of needle injections.
Table 6
Examples from children’s and parents’ description of commonly used coping strategies
Coping strategies
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Children’s quotations
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Parent’s quotations
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Distraction
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“I often watch TV or iPad or play a game when the injection is prepared” (Several, II )
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“We have used a bunch of distraction techniques, like singing, watching movies, soft toys, cold and siblings ….” (Several, II and FG)
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Rewards
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“Toys, chocolate, fun adhesive plaster, poster with stickers, Lego” (Several, II and FG)
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“The effect of rewards must not be underestimated” (Parent of 11-year old child, FG)
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Control
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“I have less control with a pen than a syringe, and I don’t appreciate that very much”. (16-year-old child, II)
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“I think it has been helpful for her to decide something herself” (Parent of 16-year-old child, II)
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Relaxation
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“When I’m thinking of something I’m looking forward to, I get relaxed” (14-year-old child, FG)
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“We practiced breathing techniques in the evenings and a bit yoga, until we felt calm and relaxed” (Parent of 6-year-old child, II)
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Increasing knowledge and technical skills
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“I think parents should inform their child what is going to happen, and to agree” (15-year-old child, II)
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“It is easier when your child understand the reason why she needs the injection” (Parent of 8-year-old child, FG)
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Pharmacological
Strategies
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“I used Emla before, but then I couldn’t deal with it anymore” (13-year-old child, FG)
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“He doesn’t use Emla anymore – it didn’t help” (Parent of 14-year-old child, FG)
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Abbreviations: II: Information from an individual interview; FG: Information from a focus group |
Continuing with needle injections
Children accepted that they would have to continue with needle injections as long as the treatment improved their quality of life. None had received a recommendation to stop the treatment due to remission of the disease, and children and parents did not know how long the treatment would last. Some hoped to stop the treatment within a few years. Children and parents described a common goal that needle injections should become a natural part of their daily lives. They found it valuable to share their experiences of home injections, which they hoped would help other children, and stated that their experiences with needle injections were important.