Background
Methods
Participants
Procedure
Individual interviews with children | Focus groups with children | |
---|---|---|
Introduction | Establish contact and tell about the study Talk about everyday life, something the child is interested in Offer the child to draw, write or something to puzzle during the interview | Establish contact and tell about the study Introduce each other (playing a game) Agree on some house rules: • What being said in the room is kept there, only the researchers are allowed to listen to the recordings • Don’t speak at the same time • We don’t need to agree, everyone may have different experiences Offer to write or draw |
Themes and questions | Can you tell about how it is to have needle injections? • About how it feels (if it hurts, what are you doing to decrease pain or worries?) • About how it takes place (who’s doing what) Can you tell about the first time you got the injection at the hospital? • Do you remember if it was painful or if you worried? • Could anything have been done differently? Can you tell about your disease and if the injection helps you? What do children need to know when they start with needle injections? What do you think about continuing with needle injections? Is there anything else you want to tell? | Can you tell about your experiences with needle sticks? • About the frequency and length of the injection • About pain and worrying How it feels (pain and worries) If it hurts or you worry, what are your actions to decrease these? Describe what’s going on in connection with the injection • What do you do before, during and afterwards • What do the adults do? Tell about the education for needle injections In what ways do the injections affect you in school, home and leisure activities? What do you think about continuing with needle injections? What do children need to know when they start with needle injections? Is there anything else you want to tell? |
Finish | Summarize the main content in the conversation and ask if I have understood it correctly Thank you very much for sharing your experiences! (Give the child a little present) | Summarize the main content in the conversation and ask if we have understood it correctly Thank you for sharing and discussing your experiences! (Give them a little present) |
Analysis
Codes from the individual interview data | Codes added from the focus groups data | Sub-Themes | Main theme |
---|---|---|---|
Children: | Children: Not Emla Relaxation Quick performance Cooling Parents: The child’s understanding Cooling Negotiation Physical Restraint | Coping strategies | Routines |
Knowledge | |||
Appraisal | |||
Getting used to | |||
Distraction | |||
Control | |||
Emla | |||
Parents: | |||
Relaxation | |||
Appraisal | |||
Getting used to | |||
Distraction | |||
Control | |||
Humor | |||
Play | |||
Emla | |||
The child’s understanding | |||
Children & parents: | Children: Self-determination Having a friend present Parents: Support from BURG | Facilitations Daily life Prevention of side effects Shared decision making | |
Regular practices | |||
Handling the equipment | |||
Teamwork | |||
Adjustments | |||
Relations | |||
Responsibility | |||
Self-injection |
Results
Participants | Characteristics |
---|---|
Individual interviews | |
Children: | |
Gender | 5 females, 2 males |
Age at interview | 6–16 years (mean 12 years, 4 ≤ 12 years and 3 > 12 years) |
Disease duration | 4–6 months (mean 5.6 months)a |
Diagnosis | Oligo JIA (2), Poly JIA (2), Enthesitis-related JIA (1), Juvenile dermatomyositis (1), Behcets disease (1) |
Medications received | Methotrexate (oral or s.c.) in combination with etanercept (Enbrel/Benepali) s.c (3) or tocilizumab (RoActemra) s.c. (1), etanercept (Enbrel) s.c. (1), methotrexate (Metex) s.c. (1) and adalimumab (Humira) s.c (1) |
Parents (of the same children): | |
Gender | 7 females, 1 male |
Focus groups | |
Children (in two groups): | |
Gender | 6 females, 3 males |
Age at time of focus group | 11–13 years (mean 12 years) in the first group and 14–17 years (mean 15.8 years) in the second group. |
Disease duration | 6 months – 15 years (mean 8.1 years) |
Diagnosis | Unspecified JIA (5), Oligo JIA (1), Poly JIA (2), Systemic JIA (1) (self-reported) |
Medications received | Methotrexate (oral or s.c.) in combination with etanercept (Enbrel/Benepali) s.c (3) or tocilizumab (RoActemra) s.c. (1), methotrexate (Metex) s.c. (3), tocilizumab (RoActemra) i.v. (1) (earlier s.c. medication) and methotrexate oral (1) (earlier s.c. medication)b |
Parents (in two groups): | |
Gender | 5 females, 3 males |
Disease duration (child) | 1–15 years (mean 7.2 years) |
Diagnosis (child) | Unspecified JIA (5), Poly JIA (2), Systemic JIA (1) (self-reported) |
Medications received (child) | Methotrexate (oral in combination with etanercept (Enbrel) s.c (2) or adalimumab. (Humira) s.c (1), methotrexate (Metex) s.c. (2), and methotrexate oral (2) |
Challenges
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.“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 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.“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 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, by holding their child to carry out the injections, but later realized how this traumatized both the child and themselves, and they could not continue.“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)
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.“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)
“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
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.“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)
Drug effects | Child’s quotation | Parent’s quotation |
---|---|---|
Positive effect | “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) | “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) |
Uncertain effect and side effects | “More energy, but not as much as expected. I was nauseous and dizzy” (14-year-old child, II) | “He was better in the body, could perform more, but was nauseous and had a headache” (Parent of 14-year-old child, II) |
Effect and side effects | “No” (9-year-old child, II) (she had side effects of steroids) | “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) |
Less effect than expected | “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) | “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) |
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.“This is something we talk to her about – how it might have been without effective medication.” (Parent of 13-year-old child, FG)
Routines and use of coping strategies
Child’s quotation | Parent’s quotation |
---|---|
“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) | “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) |
“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
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.“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)
Coping strategies | Children’s quotations | Parent’s quotations |
---|---|---|
Distraction | “I often watch TV or iPad or play a game when the injection is prepared” (Several, II) | “We have used a bunch of distraction techniques, like singing, watching movies, soft toys, cold and siblings ….” (Several, II and FG) |
Rewards | “Toys, chocolate, fun adhesive plaster, poster with stickers, Lego” (Several, II and FG) | “The effect of rewards must not be underestimated” (Parent of 11-year old child, FG) |
Control | “I have less control with a pen than a syringe, and I don’t appreciate that very much”. (16-year-old child, II) | “I think it has been helpful for her to decide something herself” (Parent of 16-year-old child, II) |
Relaxation | “When I’m thinking of something I’m looking forward to, I get relaxed” (14-year-old child, FG) | “We practiced breathing techniques in the evenings and a bit yoga, until we felt calm and relaxed” (Parent of 6-year-old child, II) |
Increasing knowledge and technical skills | “I think parents should inform their child what is going to happen, and to agree” (15-year-old child, II) | “It is easier when your child understand the reason why she needs the injection” (Parent of 8-year-old child, FG) |
Pharmacological Strategies | “I used Emla before, but then I couldn’t deal with it anymore” (13-year-old child, FG) | “He doesn’t use Emla anymore – it didn’t help” (Parent of 14-year-old child, FG) |