To Örebro University

OBJECTIVE: We aimed to translate, culturally adapt and test the Prosthetic Upper Extremity Functional Index-2 for a Swedish context.

SUBJECTS: Ten children with congenital upper limb deficiency with an upper limb prosthesis and their parents.

METHODS: The translation and cultural adaptation of the Prosthetic Upper Extremity Functional Index-2 was conducted according to the International Society for Pharmacoeconomics and Outcomes Research Principles of Good Practice for cross-cultural adaptation of patient-reported outcome measures; this comprises 10 steps, including Preparation, Forward Translation, Reconciliation, Back Translation, Back Translation Review, Harmonization, Cognitive Debriefing, Review of Cognitive Debriefing Results and Finalization, Proofreading and Final Report.

RESULT: The new translated version, tested on 10 children, 4 boys and 6 girls, 3-14 years showed good relevance for the Swedish context, the questions were easy to understand, and response options were easy to interpret. It was also easily accessible on computers and mobile devices.

CONCLUSION: The Swedish version of the Prosthetic Upper Extremity Functional Index-2 is user-friendly and provide information of the child's self-reported prosthesis use in a Swedish context. Children's right to express their opinions, is crucial, and using the questionnaire prior to their clinic visits gives children the opportunity to participate in goal setting and treatment planning.

Although recent technological developments in the field of bionic upper limb prostheses, their rejection rate remains excessively high. The reasons are diverse (e.g. lack of functionality, control complexity, and comfortability) and most of these are reported only through self-rated questionnaires. Indeed, there is no quantitative evaluation of the extent to which a novel prosthetic solution can effectively address users' needs compared to other technologies. This manuscript discusses the challenges and limitations of current upper limb prosthetic devices and evaluates their functionality through a standard functional assessment, the Assessment of Capacity for Myoelectric Control (ACMC). To include a good representation of technologies, the authors collect information from participants in the Cybathlon Powered Arm Prostheses Race 2016 and 2020. The article analyzes 7 hour and 41 min of video footage to evaluate the performance of different prosthetic devices in various tasks inspired by activities of daily living (ADL). The results show that commercially-available rigid hands perform well in dexterous grasping, while body-powered solutions are more reliable and convenient for competitive environments. The article also highlights the importance of wrist design and control modality for successful execution of ADL. Moreover, we discuss the limitations of the evaluation methodology and suggest improvements for future assessments. With regard to future development, this work highlights the need for research in intuitive control of multiple degrees of freedom, adaptive solutions, and the integration of sensory feedback.

Background: Children with congenital limb reduction deficiency live with the decisions made by their parents and healthcare professionals about treatments to be carried out during the first years of life. To understand better the meaning of treatment during childhood, it is necessary to listen to adolescents who have had this experience. The aim of this study was to investigate the perceptions of adolescents with congenital limb reduction deficiency concerning the treatment they received during childhood and what it meant to them currently and in the future.

Methods: A descriptive design with a qualitative approach was used. Semi-structured interviews were conducted with 10 adolescents (six girls and four boys) with upper and/or lower limb reduction deficiency, median age 17.5 years (range 16–19). The interview data were analysed using a phenomenographic approach.

Results: The treatment received during childhood had contributed to shaping the adolescents, as shown in the emerging description categories Creating opportunities, Choosing one's own path and Belonging in a context. Their current situation fell into three categories: A continuous journey, indicating that they still used the skills learned during childhood; Leaving the door open, indicating that they were not currently using the skills learned during childhood, but felt that there could be opportunities ahead; and Closing a chapter, indicating that they had stopped using their prosthesis or assistive devices and no longer needed those skills. Further, the adolescents' thoughts about the future are portrayed in the categories Uncertainty about the future and Confidence about the future.

Conclusions: An understanding of the meaning of treatment received during childhood may help improve the delivery of treatment and continued support to meet the needs of children with congenital limb reduction deficiency in the short and long term.

The overall aim of this thesis was to describe experiences and long-term outcomes of healthcare interventions for children with congenital limb reduction deficiency (CLRD). 

The four studies included were conducted with descriptive designs. Semi-structured interviews were carried out with parents (n=17) in study I and adolescents (n=10) in study III. Data were analyzed using a qualitativecontent analysis (study I) and a phenomenographic approach (study III). Study II was conducted with a prospective case-control design, where data from cases (n=9) and controls (n= 27) concerning prosthesis use and skills were collected for 17 years and analyzed with independentsamples tests. In study IV, a cross-sectional survey was conducted, using a study-specific questionnaire, analyzed with chi-square tests and descriptive statistics. 

The involvement of parents in decision-making and treatment for their child with a CLRD generates several roles derived from the child’s and family’s needs, with tasks assigned to the parents by HCPs. Concerning young children’s development of prosthetic skills and prosthesis use over time, our results show no additional advantages from fitting a myoelectric hand prosthesis before the age of 2½ years. The treatment received during childhood had shaped the adolescents by creating opportunities, allowing them to choose their own paths, and enabling a sense of belonging in a context. The majority of children with CLRD will, as adults, have a life situation with opportunities for education, employment, and social life, a life situation that corresponds well to the Swedish population as a whole.

This thesis shows that decisions made at an early stage for the treatment of children with CLRD contribute to physical and social skills that shape the children through their later choices and appear to be important for their future life situation. Despite different constraints people with CLRD have similar lives to their peers.

Background: Parents of children with congenital limb reduction deficiency have an essential role in making treatment decisions during their child's first years of life. Treatment options usually concern surgical and/or prosthetic treatment. To tailor treatment options to fit different family values and priorities, the family‐centred approach indicates the importance of understanding the parental role in partnership with health care professionals. The aim of this study was to describe parents' experiences of their role in decision‐making and treatment for children with congenital limb reduction deficiency.

Methods: A descriptive design with a qualitative approach was used. Semi‐structured interviews were conducted with 17 parents (12 mothers and 5 fathers) of children with upper and/or lower limb deficiency (mean age 5.9 years). The interview data were analysed using qualitative content analysis with an inductive approach.

Results: Two major themes emerged from the data. The first theme, being a decision maker for someone else, was described as an ambivalent parental role, including collaboration within the family and with health care professionals. The second theme, becoming and being a treatment supporter in the child's everyday life, was made up of four categories: being a supporter of the child in everyday activities, mentoring the child to handle encounters with others, becoming a coordinator of information and being an ‘extended arm’ of the health care provision for the child.

Conclusions: This study enhances our understanding of the parental role in decision‐making and treatment for children with congenital limb reduction deficiency. The results may contribute to the continued development of the family‐centred service approach by providing guidelines for treatment programmes, with the goal of improving decision support and broadening the support for parents during treatment for these children.

Introduction:  Different recommendations exist on what age is best for first-time fitting of myoelectric hand prosthesis (MEP) in children.

Objectives: To compare prosthetic skill, prosthetic use and risk for rejection over time between children fitted with MEP before or after 2½ years of age.

Method: A prospective case-control design was chosen. Cases were children fitted with MEP before age 2½ years (median 17 months, range 8-22) whereas controls were fitted with MEP from age 2½ years (median 36 months, range 33-42). The Skills Index Ranking Scale was used to classify prosthetic skill and prosthetic use was categorised based on wearing time and pattern. Independent samples tests were used to compare data based on age, prosthetic skill and prosthetic use at certain ages. To estimate and compare risk of prosthesis rejection between groups and over time, survival analysis was used.

Results: Cases showed prosthetic skill early, but controls did catch up at age 3½. Cases had a significant (p= 0.046) decrease in prosthetic use at age 9. In the long term, cases had a higher percentage of rejecting their prosthesis. 

Conclusion: Considering a young child’s development of prosthetic skill and prosthetic use over time, this study shows no additional advantages from fitting a myoelectric hand prosthesis very early. So, in conclusion, a recommended age for fitting myoelectric hand prosthesis in children is from 2½ years of age, with further consideration taken to the individual psychosocial and motor development.

BACKGROUND: Different recommendations exist regarding what age is best for first-time fitting of myoelectric hand prostheses in children.

OBJECTIVES: To compare prosthetic skill, prosthetic use and risk for rejection over time between children fitted with myoelectric hand prostheses before or after 2½ years of age.

STUDY DESIGN: Prospective case-control design.

METHODS: The cases were nine children fitted with myoelectric hand prostheses before the age of 2½ years, whereas the controls were 27 children who were fitted with myoelectric hand prostheses after the age of 2½ years. The Skills Index Ranking Scale was used to classify prosthetic skill, and prosthetic use was categorised based on wearing time and pattern. Independent samples tests were used to compare data between groups. To estimate and compare the risk of prosthesis rejection between groups and over time, survival analysis was used.

RESULTS: Cases showed prosthetic skill early, but controls had caught up by the age of 3½ years. Cases had a significant ( p = 0.046) decrease in prosthetic use at the age of 9 years. In the long term, cases had a higher percentage of prosthesis rejection.

CONCLUSIONS: Considering young children's development of prosthetic skill and prosthetic use over time, this study shows no additional advantages from fitting a myoelectric hand prosthesis before 2½ years of age. Clinical relevance Children may be fitted with myoelectric hand prostheses to assist in daily tasks and to prevent future over-use problems. Most children fitted with myoelectric hand prostheses before 4 years of age become regular users. No advantages of fitting myoelectric hand prostheses before 2½ years of age were observed.

Introduction: In the past decade the relationship between parents, families and health service providers has changed. Parents are increasingly involved in decision making and treatment processes. Parents to children with congenital limb deficiency are facing many decisions related to their child during the child’s first years; decisions about e.g. when or if to start interventions. Usually interventions concern surgical and/or prosthetic treatment.

Objectives: The aim of this study is to describe parent´s experiences of their role in decision-making and treatment for children with congenital limb deficiency. 

Method: Qualitative data were collected through semi-structured individual interviews. The interviews were conducted with parents to children, one to ten year of age, with some kind of congenital limb deficiency. The data was analyzed using qualitative content analysis with inductive approach.    

Results: The result from the analysis shows themes revealing parents’ experiences of being a collaborator within the family and between health providers and family, facing and handling early decisions for the child, and, being and acting as a supporter in everyday life.

Conclusion: The results contribute to new knowledge and understanding of parents’ role in decision and treatment of children with congenital limb deficiency. This may help to further improvement of family centered health service for families with children with congenital disabilities.