Patient and Family Perceptions of a Juvenile Amputee Clinic
BY V. SUDERMAN*, R. C. TERVO, M.D.**,AND J. LESZCZYNSKI***Children's Rehabilitation Centre
The Juvenile Amputee Clinic, University Hospital, Saskatoon, serves patients from the province of Saskatchewan. The purpose of this study is to survey the service needs as related by the families and children attending the Juvenile Amputee Clinic with specific reference to functional skills, management (e.g., merits of early or late fitting of a prosthesis, repairs, adjustments, etc.) and follow-up. A questionnaire was administered to all patients attending the Juvenile Amputee Clinic. Recommendations to refine the service of the clinic have been drawn up.
Patients and Methods
The questionnaire, designed according to Feather1, was administered by telephone to 34 patients, 8 female and 26 male, ages 1.14 to 18.5 years (X ± S.D. = 11.5 ± 5.2 years) currently attending the Juvenile Amputee Clinic, University Hospital, Saskatoon, Saskatchewan. The questionnaire consisted of 41 questions. Questions 1-3 dealt with initial prosthetic training while questions 4-16 explored the child's use of the limb. Maintenance and wear were surveyed in questions 17-21, and questions 22-29 explored self-consciousness and adjustment. Questions 30-32 dealt with career choice. Parents' opinions of clinic effectiveness were elicted in questions 33 and 34, and finally questions 35-41 surveyed parents' adjustments and attitudes towards the clinic. Parents' comments were solicited at the end of the questionnaire.
The sample population consisted of three groups: children who were prosthetic wearers (W), those who were non-wearers (NW), and those who were never fitted (NF). The questionnaire format was tailored slightly for each group and for two children who were under the age of two. Parents were the main respondents (32/34).
Of the 39 children attending the clinic, five were excluded: four did not have telephones, and one could not be contacted for other reasons. One child, with upper and lower congenital amputations, was included twice (as an upper and a lower amputee), bringing the total number surveyed to 35.
Most upper-limb amputees (16/23) used a prosthetic device; the others had either discarded the prosthesis or were never fitted. All 12 lower amputees used a prosthetic device.
The initial prosthetic training was often given by an occupational or physical therapist (14/34), parents (7/34), or the child himself (15/34). Most of the lower-limb (8/ 12) and half of the upper-limb amputees (10/20) received less than five hours of formal instruction; six of 20 upper-limb amputees received more than 30 hours. All, except two upper-limb amputees, felt that the amount of instruction was adequate.
Difficulties with a prosthesis and reasons why it is removed during the day are found in Table 1-A . Although most parents stated that all activities at home, school, and play could be achieved by their child wearing the prosthesis, in fact it was often removed for activities, such as barn chores, gymnastics (climbing "monkey" bars), and playing hockey (either to protect the prosthesis or the other players), to free the child from an encumbrance (Table 1-B ).
Although preferring to do things for themselves (31/33), most amputees (15/20 upper, 7/12 lower) did not mind when offered help. This independence and self-confidence causes only a few (7/33) to worry about the future or things they are not able to do. Only three children could foresee future limitations in careers; they aspire to be farmers, teachers, veterinarians, and mechanics, and one young boy thought he would make a good policeman since he could kick people and not feel it!
Most do not object to questions about limb loss from friends (21/23 upper, 10/12 lower) or strangers (12/23 upper, 10/12 lower). The possibility that they may be stared at or asked questions does not influence the places they frequent (22/23 upper, 10/12 lower). They seem to have incorporated their prosthesis into their body image (9/23 upper, 12/12 lower), and most felt that function was more important than cosmesis (Table 2 ). Only a few (7/20 upper, 2/12 lower) worried about the impression their prosthesis made on others. All lower-limb amputees wore their prostheses 12 to 16 hours a day and made use of them spontaneously. Most upper-limb amputees wore and used their prostheses spontaneously for more than 10 hours a day (11 / 15). Interestingly, current wearers had never been without their device for more than two months.
The most difficult period of adjustment for amputees and parents is shown in Table 3 . Counselling received at the time of limb loss (14/34) was often perceived as being inadequate (10/34). While seven parents said that they would have preferred more counselling, several parents (9/34) felt that nothing could have been done to ease the initial pain of accepting their child's deformity, and 10 mentioned that talking to other parents, or viewing a parent-education videotape such as "Why Us?", recently produced by the Children's Rehabilitation Centre, could have helped them.
Five parents felt that their child should have been seen on an initial visit at the Juvenile Amputee Clinic earlier. Fifteen expressed a feeling that an early referral to the Juvenile Amputee Clinic gave them a chance to see other parents coping with similar problems, and the clinic team back-up service gave them a feeling of security, facilitated acceptance, and eased uncertainties about the future. Four parents speculated that an earlier appointment could have helped them adjust better. Only one parent felt the Clinic did not meet the emotional needs of the parents.
Some parents (12/34) experienced strong feelings of anxiety, anger, guilt, frustration, remorse, and uncertainty about the future. Two parents felt that it was normal and necessary to experience such emotions. Two parents said that these feelings influenced negatively their attitude toward their child's use of the prosthesis, and several stated that they kept their feelings to themselves and did not express them to anyone.
Parents said that they saw their child as essentially normal and healthy. An amputation does not mean impaired mental function or diminished worth. Amputation is a handicap imposing restrictions, but one that should not prevent their child from being treated as normal. The children say that they see themselves as normal. They swim, ride motorcycles, play hockey, baseball, basketball, and musical instruments just like any other child. They are characterized by a fierce independence and will attempt any activity to match their peers.
To help recover from the initial shock of accidental amputation or the birth of a child with a congenital limb loss, families need adequate counselling and support. The primary care physician must be aware of available resources such as a multidisciplinary Juvenile Amputee Clinic and refer children and parents to such facilities as early as possible so that the appropriate community and professional resources can be mobilized'. Parents pass through stages of grief and mourning for their child's limb loss. Physicians should be able to channel and use these emotions constructively or refer parents to professionals who can understand and support them. This sense of security is inevitably passed on to the child. Conversely, misunderstood and hostile parents usually guarantee the failure of any prosthetic program for their child.
Perinatal or post-trauma counselling must be oriented to future needs. Parents must face the future, and they constantly need a changing input into their child's management. The input of parents and their child must be included in making clinical decisions about future management. Regular reviews at the Juvenile Amputee Clinic are important, as is the formation of a concerned parents' group where parents support each other and often take some of the counselling load off the clinic team. Ideas can be exchanged as to how not to smother their child's independence with overprotectiveness, or how to deal with the adolescent who no longer feels prosthetic function is a priority, but rather cosmesis. Amputees can also help each other to accept themselves as they are and to deal with peer rejection, which they fear the most. It is important for parents to interact with the prosthetist and to see prosthetic limbs before the child is fitted.
It is recommended that early fitting be emphasized for the advantages it gives to the child and to the child's parents. Prompt action should be taken at the time of birth or injury to provide the juvenile amputee and his family with early and appropriate prosthetic advice by a team of skilled professionals.
Appreciation is expressed to A. Salkeld, Occupational Therapist, for her constructive comments.
* Medical Student, University of Saskatchewan
** Assistant Professor, Pediatrics and Rehabilitation "* Professor and Head of Department of Rehabilitation
- Feather, J., Questionnaire design. In Sacket, D. L., and M. S. Baskin (eds.), Methods of Health Care Evaluation. Hamilton, McMaster University, 1977.
- Pi, E. H., Congenitally handicapped children and their families. Postgrad Medicine, 68(2), 1980.
- Shokeir, M. H. K., Managing the family of the abnormal newborn. In Epstein, et al. (eds.), Risk, Communication, and Decision Making in Genetic Counselling. Alan R. Liss, Inc., New York, 1972.