1.1 Feelings.

Few of the children and adolescents had exclusively positive or negative feelings towards their deficiency, most of them reported both. The youngest children (aged 8–12) were particularly likely to describe mixed feelings about their arm:

“Sometimes it’s fun to have a short arm, but sometimes it isn’t, because sometimes I’m ashamed of my short arm.”

(11-year-old girl, non-wearer)

“I don’t mind [having one hand]… But I’d prefer to have a normal hand.”

(8-year-old girl, wearer)

Mixed feelings about the deficiency were, for example, encountered in friendships and relationships. Making contact and starting up new friendships with peers appeared to be no problem for the youngest children. Several adolescents, on the other hand, described difficulties with making contact and starting up relationships. These difficulties were often caused by insecurity about what others would think about the deficiency.

Negative feelings reported by children and adolescents were shame, feelings of being different than peers, being fed up with the deficiency and wishing to be more like everybody else. These negative feelings were generally caused by the negative reactions which children and adolescents got from people in their environment. What children and adolescents found by far the most aggravating was that people, especially strangers and other children, constantly stared at the short arm:

“It’s really annoying that people stare at it [the short arm] continuously.”

(16-year-old girl, wearer)

“When I’m walking in town, they [strangers] look at you as if you’re a whole other person, and then I get ashamed of myself.”

(13-year-old girl, non-wearer)

Other reactions from the environment which affected children and adolescents with UCBED negatively were teasing (which was especially common in primary school), rejection, being treated differently than peers, and people being scared of the short arm. Negative feelings about the short arm were also described in situations where a child had to meet new people (transition to a new school, going out) or in which the short arm became evident (wearing a t-shirt during summer or vacation). Children aged 13 to 16 were particularly prone to having negative feelings related to UCBED, reporting feelings of shame and being different than peers. Some children and adolescents aged 13 to 20 described puberty as a tough time, since appearance became more important then. This caused insecurity about the short arm, which in most cases disappeared after puberty. Despite the negative feelings often experienced during puberty, several children of 13 years and older stated that they no longer wished for a sound hand:

“I was born this way and even if it would be possible to “get” another arm, I wouldn’t want that.”

(16-year-old girl, non-wearer)

The remarks of children in the youngest age group (aged 8–12) were in contrast to the former statement. This group of children preferred to have two sound arms.

Positive feelings towards the short arm included pride, acceptance, satisfaction, being okay with being different than peers, and not feeling different at all. These kinds of feelings were usually reported by adolescents (aged 17–20); they were no longer ashamed of their arm, and they described that feelings of acceptance dominated. Positive feelings towards the deficiency were also to a great extent determined by the way people in the child’s environment reacted to the deficiency. Several children and adolescents described receiving positive reactions from their environment, such as acceptance, respect and admiration for the way they functioned with their deficiency. Adolescents gave more examples of these positive reactions from the environment than the two younger age groups.

1.2 What helps?

Support from people in the direct environment of the child (family, friends and classmates) was very important and helped children and adolescents to cope with their short arm (Table 2). This was expressed particularly frequently by children up to the age of 16. Wearing a prosthesis also seemed helpful for several children and adolescents. A prosthesis was often chosen for cosmetic reasons, to prevent staring and other negative reactions from the environment:

“The reason for me to start wearing a prosthesis was that I was annoyed by the constant staring of people. People happen to remember the first impression they have of someone. It’s not that I’m ashamed of it, but I just don’t want to be seen as the boy with one arm.”

(20-year-old boy, wearer)

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Table 2. Things that help children/adolescents with UCBED to cope with the deficiency.

https://doi.org/10.1371/journal.pone.0037099.t002

Contact with similar others and help from the rehabilitation team was particularly important for children aged 13–16. For some children, hiding the short arm seemed to be the best option to avoid reactions:

“In primary school, I used to hide my arm in the drawer of my desk. I usually wear long-sleeved shirts, even during gym class. I’m scared of wearing a t-shirt.”

(13-year-old girl, non-wearer)

Furthermore, children and adolescents often choose to provide information on their deficiency in order to put a stop to people from their environment who are staring at them. In contrast, they did not feel the need to talk about the deficiency to parents or psychologists. Finally, some of the children and adolescents felt that people in their environment should accept them as they are.

“It doesn’t matter to me at all what others think. And when they look at me, I’ll look back or I’ll ask: “what is the matter?”. They have to take me as I am.”

(18-year-old girl, wearer)

1.3 Differences between prosthesis wearers and non-wearers.

The extent to which children and adolescents had positive, negative or mixed feelings related to the short arm did not differ between prosthesis wearers and non-wearers. A difference was found, however, in the participants’ remarks about their wish to have a sound hand. Some non-wearers indicated that they would rather have a sound hand if they had had the choice, while other non-wearers had stopped wishing for a sound hand because they felt complete without it. The latter remark was not made by prosthesis wearers. Wearers only indicated they would like two sound hands. Furthermore, non-wearers gave more examples of negative reactions from people in their environment – such as rejection, teasing, being treated differently or being stared at – than wearers. Another difference between wearers and non-wearers was that prosthesis wearers indicated more often than non-wearers that they found the summer or going on holidays difficult, because their deficiency would then become more obvious.

Non-wearers were more often of the opinion that others “have to take me as I am” or “if they think I’m weird, they are not worth being my friends”, compared to prosthesis wearers. This seemed a helpful strategy for them to cope with reactions from people in the environment. Generally, non-wearers described more extensively than wearers how they responded to reactions from people in the environment. Non-wearers used humour more often than wearers to deal with reactions. An example:

“A man at the ski-lift once tried to help me, and pulled my glove. There I was already on the lift and he was left holding my glove. His face turned white, because he thought he had pulled off my hand. My whole family laughed. Sometimes, laughing is the best way to deal with it.”

(11-year-old boy, non-wearer)

Furthermore, non-wearers were more willing to explain UCBED to people in their environment, but also more likely to hide their short arm than prosthesis wearers.

2.1 Feelings from their children’s perspective.

Parents are well aware of the fact that their children’s negative feelings towards their arm arise from the staring of strangers. According to parents, staring was what bothered their children most of all the reactions from people in the environment. A few parents mentioned teasing, rejection and being treated differently as further reactions from the environment which affected their children negatively, but these kinds of reactions were mentioned less often than by the children and adolescents themselves.

Parents described that their children had mainly positive feelings about their deficiency: the children had accepted their deficiency and felt okay with being different than peers. Another difference was that parents gave fewer examples of positive reactions from the environment (such as acceptance, respect and admiration) compared to children and adolescents.

2.2 Parents’ own feelings.

Most parents described that they have gone through different stages of acceptance after the birth of their child. Right after birth, negative feelings such as anger, shame and guilt dominated. Sometimes these feelings were quickly replaced by acceptance. With other parents it took longer, because they saw the deficiency as a handicap in their children’s early years. These feelings disappeared when the parents noticed that their children were doing very well and that they developed just like any other child:

““How can you accept your child’s deficiency?” Our acceptance came when she showed us what she was capable of.”

(Parent of a 9-year-old girl, non-wearer)

A lot of parents explained the exact moment when their children came to realise they were different than peers. That moment appeared not to be attached to a certain age, but was triggered by events in the children’s early lives. For example, when children with UCBED got a brother or sister with two hands, or when other people or children said things about the short arm:

“The awareness of the short arm came for my son when he was 3 or 4 years old. He overheard a conversation between another boy and his mother. To the boy’s question of why my son had only one hand, his mother responded that he just had bad luck. Up to that point my son had not thought that he had “bad luck”. However, that moment in the gym was the moment he realised that his hand was not going to grow any further and that no doctor could ever ‘fix’ it.”

(Parent of a 17-year-old boy, non-wearer)

2.3 What helps?

Parents mentioned, just like children and adolescents, that wearing a prosthesis and peer-to-peer contact with similar others can be helpful in learning to live with UCBED (Table 2). In addition, parents also described the value of the assistance from the rehabilitation team. Both peer-to-peer contact and assistance from the rehabilitation team was not only helpful for children, but also for parents. It offered understanding and recognition and reassured parents about their child’s future.

Several parents said that the best way to support their child was to be open about the short arm and to speak about it positively, to give their children the feeling that the arm is nothing to be ashamed of. In addition, parents reported that their children’s personalities were important in coping with the deficiency. Most parents described their children as blessed with a good sense of humour, persistence and self-confidence and they felt that these characteristics helped their children deal with their deficiency.

3.1 Feelings.

Health professionals only gave very few examples of the feelings which children or adolescents with UCBED have towards their deficiency:

“Every child has a moment while growing up when he or she feels fed up with having a short arm; whether that is sorrow…having a hard time responding to other’s reactions…or being tired of explaining that you’re not restricted in activities or participation…”.

3.2 What helps?

Health professionals described that assistance from rehabilitation teams should include psychosocial help and education of children and parents. Furthermore, they recommended that there should be a collaboration between the rehabilitation team and the child’s environment, such as school, family or sports club. Professionals considered psychosocial help of importance in teaching children to talk about the deficiency.

Professionals stressed that the parents’ coping strategy is of great importance in how children learn to deal with the fact that they have a short arm. If parents can accept their children’s deficiency and behave normally about it, it is easier for the children to cope with it. Remarkably, this parental influence was not mentioned by the parents themselves.

Children and adolescents.

The negative feelings throughout early adolescence, which we detected in this study, are not necessarily related to UCBED and are also observed in able-bodied children [26]. Able-bodied children and adolescents also appear to go through different phases in life, and body image and psychological wellbeing seemed to be related most strongly during adolescence [27]–[30]. Despite the negative feelings associated with early adolescence, children and adolescents from the age of thirteen and older often stated that they no longer wanted a sound hand, in contrast with the younger children. This says something about the level of acceptance at different ages. Only one group of children (13–16 years) considered contact with similar others and support from the rehabilitation team very valuable, while these were not mentioned as helpful by the other age groups. Perhaps, it is typical for puberty to find these things to learn to cope with the short arm important. During the interviews, participants made some remarks about making contact and starting up relationships, but the subject sexuality has not been discussed during the study week. Nor did we explicitly ask about it. However, it is remarkable that sexuality was not mentioned at all, and further research into this topic would be interesting.

Prosthesis wearers and non-wearers.

It seems that non-wearers were more resilient, used humour more often in response to reactions, and were more willing to provide explanations about the deficiency. However, non-wearers also tended to hide their arm more often than wearers. This seems to contradict the conclusion that they are more resilient than wearers. Maybe, non-wearers do not always feel like explaining their deficiency and then hiding the arm seems to be their strategy to resist the staring. Wearers do not need this hiding strategy, since their deficiency is not that visible through the prosthesis. For wearers, wearing a prosthesis could be of value in avoiding inconvenient environmental factors and can therefore help a child build up confidence and prevent from negative feelings caused by staring. These aspects of wearing a prosthesis should be incorporated more explicitly into the information provided to parents and children.

Parents and children.

Parents reported fewer negative feelings than children did and thus overestimated the psychosocial functioning of their child. This was in contrast to Ylimäinen et al.’s findings [5] that parents tend to overemphasise the problems of a child with a deficiency. However, these results concerned health-related quality of life, which is not the same as psychosocial functioning. Our results may reflect the parents’ judgment of the functioning of their child as a whole. Functioning also contains other aspects, such as performing activities and participation [31], in addition to psychosocial elements. Parents could unfairly assume their children to be functioning well psychosocially, because they lack activity limitations or participation restrictions.

Parents.

The parental emphasis on the importance of their child’s personality in learning to cope with UCBED was remarkable. They believed that special features in their child’s personality had contributed to the ability to cope so well with the deficiency. In previous research, parents also described their children with upper limb differences as strong, resourceful and intelligent individuals who coped very well with their deficiency [4]. These results indicate that there could be personality differences between children with UCBED and those without physical differences – raising the question whether having a visible deficiency is character forming.

Health professionals.

The health professionals’ emphasis on the importance of support from parents of children with UCBED was striking. This finding confirmed previous investigations stating that more adaptive parental psychological adjustment was associated with positive psychological adjustment [32]. A study among able-bodied adolescents also proved that the family environment was the most important factor in explaining high levels of self-esteem despite poorer perceptions of personal appearance [26]. However, the parents in our study did not seem to be aware of their great influence. This could be a task for rehabilitation care; raising parental awareness of their influence on the psychosocial functioning of their children. Another difference in the perspectives of health professionals and the other participating groups was that professionals stressed the importance and possibilities of psychosocial help given by specialists in rehabilitation teams. During the online focus group interviews, however, children and adolescents indicated that they did not feel the need to talk to professionals about the deficiency. Contact with similar others can be regarded as an important form of psychosocial help and should be incorporated more structurally into rehabilitation care. In addition to peer-to-peer contact during specially organised days, social media can also play a part. Online discussion forums like the one we used in our study are a modern and easy way for children and adolescents with UCBED to get in touch with peers, and appeared to be a form which was greatly appreciated by participants. Furthermore, since support from parents is of great influence in how children with UCBED cope with the deficiency, it is also advisable to involve parents in psychosocial treatment. Previous investigation of children with cerebral palsy has already recommended interventions including family members, since the resilience and successful adaptation of parents appeared to be associated with effective coping in children [33].