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Revista chilena de pediatría

versión impresa ISSN 0370-4106

Rev. chil. pediatr. vol.90 no.5 Santiago oct. 2019

http://dx.doi.org/10.32641/rchped.v90i5.1125 

CLINICAL CASE

Experiences of the use of 3D printed hand ortoprosthesis (Cyborg Beast) in adolescents with congenital hand amputation and their main caregivers: A study of cases

Carolina Giaconi1 

Paula Nahuelhual1 

Jacqueline Dote2 

Rodrigo Cubillos3 

Gabriel Fuentes3 

Jorge Zúñiga4  5 

1 Research and Development Directorate. Teletón Chile, Chile.

2 Orthotics and Prosthetics Laboratory. Teletón Chile, Chile.

3 Assistive Technology Unit. Teletón Chile, Chile.

4 Department of Biomechanics, University of Nebraska Omaha, USA.

5 Faculty of Health Sciences, Universidad Autónoma de Chile, Chile.

Abstract:

Objective:

To describe the experience of using the 3D-printed prosthetic hand Cyborg Beast in ado lescents of Teletón Santiago with congenital hand amputation and their main caregivers who partici pated in a case study to evaluate the functionality of the prosthetic hand.

Clinical Case:

Qualitative and descriptive research of case studies using semi-structured interviews with five adolescents with congenital hand amputation and their main caregivers. The information was transcribed and ana lyzed through open coding. Participants visualize the prosthesis as an opportunity for them by asso ciating it with normality. They also identify positive and negative characteristics, emphasizing in the latter. In addition, they described positive and negative effects produced when using the prosthesis, highlighting that the use of the prosthesis allows them to talk about their condition. Finally, im provement proposals for the prosthesis are presented, defining that the prototype must be corrected and change the age of the target population.

Conclusions:

The study is the first to investigate a little explored topic, allowing to provide information regarding the subjective experience of adolescents who use a prosthesis that currently has great media importance. The study participants reported dif ficulties in using the hand prosthesis, either due to materiality and design aspects. The prosthesis did not meet the expectations of use and esthetic.

Keywords: Hand partial amputation; prosthetics; 3D printing; rehabilitation; qualitative research

Introduction

Congenital upper limb deficiencies are alterations that occur during the gestational stage1, affecting com pletely or partially the development and growth of the upper extremities. Partial amputations are those in which there is a remaining segment of the limb, and complete amputations involve the absence of the up per limb2. Some amputations occur due to a syndrome and may be associated with other organ deficiencies3.

The existence of this impairment requires an ad justment on the part of the child and/or adolescent to life with amputation, where the family is a crucial factor4. Thus, factors such as depression, stress or other symptoms present in family members are often pre dictors of difficulties for children to adapt to the im pairment, have good self-esteem and self-concept5,6, which directly affects their quality of life7-9. A study that assessed self-concept and psychological well-being showed that self-concept was not significantly different in groups of children with and without impairments10; however, children with mild abnormalities -such as partial hand amputations- had worse outcomes than those with severe abnormalities. It has also been repor ted that the psychosocial functioning of children with congenital impairments tends not to be different from that of children without impairments9.

Both data are fundamental when considering treatments for congenital upper limb deficiencies because although it is a minor physical alteration, it has been proven that this deficit significantly affects psychosocial functioning and well-being. These diffi culties are even more relevant in adolescence since the determining aspects in the psychosocial sphere are body image, relationship with peers and the develo pment of one’s own identity11,12, therefore, the use of prosthesis is a must for patients with amputations13.

In the case of children and adolescents with conge nital hand amputations, passive prostheses are prefe rably used as an esthetic element or active prostheses -mechanical or electric- that improve functionality14, however, this will depend on the level of amputation and functionality achieved without prostheses15. This last aspect is fundamental for adherence in this popu lation, as low adherence to the use of prostheses has been reported in patients with limb sensitivity and/or grip function16,17. Adherence to the use of prostheses depends on factors such as type of amputation, age, sex, type of prosthesis, among others15,17,18.

Clinical Case

This clinical case study was part of a mixed-type investigation aimed at evaluating the effect of the Cy borg Beast prosthetic hand on the functionality of the upper limbs. This prosthesis is a low cost mechani cal orthopedic prosthesis developed with 3D printing technology19-21. This article will present the results obtained through qualitative methodology, which aimed to describe the experiences of five adolescents with congenital partial hand amputation and their caregivers, regarding the use of the 3D-printed or thopedic prosthetic hand Cyborg Beast, from a quali tative case study.

Participants

The participants were five adolescents with conge nital partial hand amputation from the Teletón San tiago Institute and their main caregivers (See Table 1). Users with congenital hand amputation (left or right) aged between 12 to 17 years and residing in Santiago were included. All of them had similar physical cha racteristics in relation to the type of amputation. Five patients were included because five prototypes of the orthopedic prosthesis were available, which were do nated to Teletón. Each one was designed and customi zed for each user, according to the preference of colors and physical characteristics of their hand.

Table 1 Characteristics of participants and their caregivers. 

Data production and analysis

Ten semi-structured interviews were conducted af ter finishing the period of prosthesis use (four months). The interviews were carried out at the Teletón Santiago Institute and were recorded. At each opportunity, the adolescent and his or her main caregiver were asked to attend the Institute, both were given the interview details and then were individually interviewed. For the data production, two interview guidelines were avai lable, one for adolescents and another one for care givers, which included questions on first impression, functions, social impact, choice of use, and meanings related to the use of the orthopedic prosthesis. For the analysis, a qualitative content analysis was carried out through open coding22, first, the interview audios were transcribed and then analyzed line by line, assigning concepts inductively.

Ethical considerations

This work was approved by the Scientific Ethics Committee of the Sociedad Pro Ayuda del Niño Lisiado, (Project n° 43/2014). Participants signed assent and in formed consent.

Results

Five general categories were established from the analysis regarding the experience of using the Cyborg Beast orthopedic prosthesis (See Figure 1).

Figure 1 Hierarchical organisation scheme of the categories and subcate gories. 

a. Meanings attributed to the Cyborg Beast hand

Adolescents and their caregivers conceive the hand as an opportunity because they feel privileged by par ticipating in the study and in the evaluation of the orthopedic prosthesis, and also because they believe that the hand is an opportunity that will create better prototypes for children and young people who have an amputation. As reported by a caregiver “it may not be what one expected, but I say maybe with this they’re gonna... in time they’re gonna do something else, so you can never refuse... to experience something that may at some point really be useful for you... that will make a contribu tion to your daily life” (C2).

Adolescents mean the use of the hand with expec tations of normality, indicating that they feel complete when wearing this prosthesis, which is evident as re ported by one of the adolescents “to see yourself with, with the five [fingers] already, that makes the difference (...) I for one, that I have this disease, as a boy always like, I thought, eh, how it would be and how I would look with the five fingers” (P5).

b. Characteristics of the Cyborg-Beast hand

Participants recognize that the orthopedic prosthe sis has both positive and negative characteristics. As a positive feature, they recognize that it is easy to fix when damaged. In relation to the negative, adolescents and caregivers identify that the prosthesis is fragile, which is why users are afraid to wear it, because it can break easily, “to use the hand I was told ... to squeeze to see the strength and I squeezed and this one, the modera tor, the pressure moderator came out so that’s why I don’t use much it as it may come out and break” (P3).

Both groups identify that the hand is not very functional, because it is less functional than their real hand and supports little weight, not fulfilling the ex pectations that they had when starting its use, “the he aviest thing I grabbed was a glass of water (...) I think it was mine that was loosening up the whole little thing, so it was very, it was also much more difficult because of that” (P5).

Finally, caregivers and adolescents identify that the prosthesis has esthetic problems, as it is very large, no ticeable, rough, masculine, and robotic, which makes difficult its use in adolescents. As reported by a care giver, “I believe it’s strange. Because of everything, the bolts, eeeeverything. I thought no, that it wasn’t gonna be too noticeable, but... I don’t know, it’s kinda weird. I believe, it’s not ugly, but it’s not pretty either, I wouldn’t use it in the street” (C2). The caregivers add that these features would make the prosthesis more difficult to use in women.

c. Effects of using the Cyborg-Beast hand

The use of the prosthesis, according to the partici pants, causes positive and negative effects. As positive effects, the adolescents indicate that the prosthesis has allowed them to talk about their disability with other people, “you feel more comfortable, because when you talk to your friend and say: “hey, I’ve got this hand!”, they say: “oh, that’s cool, go to show it and you can touch the subject that before was not touched because it’s em barrassing, or that someone could make fun of you” (P3).

Regarding the negative effects, adolescents and ca regivers report that the constant use of the prosthesis causes them injuries since the material used for making the prosthesis is made of a ‘very hard’ plastic. In addi tion, they add that its use causes discomfort since it is felt like an object foreign to the body, “It’s like I don’t feel that it’s part of me because (...) it’s like something that I feel uncomfortable on top of my hand” (P4).

Finally, there is some inconsistency in the dis course of the participants, since both groups identify that, although the prosthesis diminishes the difficulty to carry out certain activities, it causes difficulties to perform other actions. This can be observed in the re port of one of the adolescents “it limited movement, it limited it to me, I see the hand of [name a participant] and him, obviously he didn’t have as much finger as I did, so it helps him, but for example it limited me a little more in doing things, in grabbing, to play the guitar, for example” (P5).

d. Cyborg Beast hand uses

Participants report that they little used the prosthe- ses. As reasons for this low use, the adolescents indica ted that they did not like using it, while their caregivers reported that the adolescents had difficulty adapting to it because it did not adapt to their needs. Both ado lescents and caregivers added that the prosthesis was never used in schools and was only used at home. Both groups also added that those who accept their condi tion prefer not to use a prosthesis, “I’ve been fifteen years with my normal hand, so give me a new hand is like... maybe a little shocking... I prefer my normal hand honestly (...) being sincere, quite honest, I prefer my nor mal hand (...) honestly... I feel..., like I’m satisfied with myself’ (P2). This discourse demonstrates that the par ticipants in this study were used to using their hand with the functionality it already gave them, thus the use of the orthopedic prosthesis was not a significant change for them. In relation to the uses given to the prosthesis, the adolescents indicated that the main ac tivity they performed was grabbing objects, and the ca regivers add that the adolescents used the hand to play or have fun with their relatives.

e. Proposals to improve the Cyborg Beast hand

Finally, participants indicated proposals to impro ve the Cyborg Beast orthopedic prosthesis. First of all, they indicated that the prototype should be improved, increasing the colors variety, adding colors that are not very bright and ‘similar to skin’, “I’d have more variety of color (...) because I was told that there was only pink (...) I’d also add like... skin, right, yes, more neutral co lors, not so bright” (P2). Both groups add that the adhe sion of the protective silicones at the distal ends of the fingers of the orthopedic prosthesis should be impro ved and that it should be made more like a real hand.

Adolescents add that the prosthesis should have in dependent movement of the fingers, “try to move the fingers because they’re like, like normal hand movements (...) that’s like a real hand, but, made of plastic” (P1). All these improvements would make the prosthesis more like a real hand, causing an increase in its use.

Finally, the participants agree that the target po pulation of the prosthesis should be changed, Cyborg Beast hand should be provided to the child population, since children could adapt more easily than adolescents “I think that, at seven, eight (...), because like at that age it doesn’t matter so much to them and... like when you’re younger, they don’t make fun so much” (C2).

Discussion

The results of the study show that the adolescents hardly used the orthopedic prosthetic hand since they had serious difficulties in getting used to it because they were adapted to their impairment, or because the prosthesis was perceived as a foreign object to their body, which was also too noticeable, so it did not com ply with their expectation of ‘normality’. Regarding manual functionality, the patients who participated in this study had already solved most of their activities with the remaining segment of the hand they had, the refore, they report that the biggest problem they see in the prosthesis is the esthetic, as they have tried not to continue drawing the attention of their environment with the prosthesis, since they feel they had already done it with the amputation before. What the partici pating adolescents repeated most was the need for the prosthesis to be as close as possible to a ‘normal hand’ which is related to studies that have evaluated self-con cept in children with mild impairments10.

It is important to note that the participants repor ted difficulty in getting used to the prosthetic hand, which may be explained by increased concern about body appearance during adolescence, which generates great concern in adolescents with estrangement and rejection of their own body, insecurity regarding their attractiveness, and increased interest in sexuality23. This is particularly relevant in the case of adolescents with visible impairments, so incorporating a prosthesis during adolescence can be counterproductive4,9 since, as indicated, adolescents claim that they have got used to ‘not having a hand’.

This is reinforced by the participants who agree that it would be good to try this type of prosthesis in younger children, as they consider that acceptance by this age group could be better because they would not be used to their amputation and, due to their nature as children, they could see the prosthesis as a toy, being able to incorporate it more easily into their daily life.

The results of this study highlight the importance of incorporating the participants’ expectations in the evaluation of prostheses or any technical assistance, often developed only from the point of view of design and engineering, being fundamental to also consider the stage of the life cycle that the patients are living. Finally, regarding the high expectations of the prosthe sis use, it is believed that the high media diffusion as a result of the innovation the prosthesis implies, could generate higher expectations among the participants, therefore it is considered fundamental to continue developing studies of functionality and meanings, in order to generate evidence that can support decision making and the delivery of empirical information re garding these innovations.

Conclusions

This study highlights the need to consider the vi sion and subjectivity of the users who will make use of these orthopedic prostheses since adaptation to them will always be an individual experience, which will vary according to different areas, such as functionali ty achieved with the remaining segment of the hand, age, adaptation to the condition, and socio-cultural context; all elements described by the participants. The orthopedic prosthesis did not meet the expectations of use and esthetics.

Ethical Responsibilities

Human Beings and animals protection: Disclosure the authors state that the procedures were followed ac cording to the Declaration of Helsinki and the World Medical Association regarding human experimenta tion developed for the medical community.

Data confidentiality: The authors state that they have followed the protocols of their Center and Local regu lations on the publication of patient data.

Rights to privacy and informed consent: The authors have obtained the informed consent of the patients and/or subjects referred to in the article. This document is in the possession of the correspondence author.

Conflicts of Interest: Jorge Zúñiga is the designer of the prosthetic hand Cy borg Beast. The rest of the researchers declare that they have no conflict of interest.

Financial Disclosure: Authors state that no economic support has been asso ciated with the present study.

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Received: March 06, 2019; Accepted: May 02, 2019

Correspondence: Carolina Giaconi. E-mail: carolina.giaconi@gmail.com.

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