Evaluation of an Education Day for families of children with obstetrical brachial plexus palsy.
Keywords: brachial plexus, pediatrics, family, education, psychosocial support
Obstetrical brachial plexus palsy affects 2 in 1000 live births (Greenwald, Schute, & Shiveley, 1984). The majority of these infants recover full function of the upper limb, however children with more severe injuries may require surgical interventions to improve upper limb function (Waters, 2005). Interventions include nerve grafts and transfers to reconstruct the brachial plexus as well as potential reconstructive surgery of the muscles, tendons, and joints in the upper limb (Waters, 2005). Despite surgical reconstructive procedures these children have a chronic physical impairment affecting the appearance, active range of motion and strength of the limb.
PSYCHOSOCIAL ADJUSTMENT OF FAMILIES
The psychosocial adjustment of families of children with obstetrical brachial plexus palsy (OBPP) has not been widely studied. Families of children with OBPP often vocalize a multitude of complex emotional responses to their child's impairment including shock, grief, anger, and disbelief. These families benefit from prompt and responsive communication, education, and support from members of the interprofessional team (Bellew & Kay, 2003). Providing empathy and education regarding the diagnosis is important to families at time of birth (Kerr & McIntosh, 1998).
McLean, Harvey, Pallant, Bartlett, and Mutimer (2004), evaluated a cohort of 53 mothers with children with OBPP between 3 months to 15 years of age. This study highlighted that adjustment issues are present in mothers of children with OBPP from infancy to teenage years. A positive association between perceived disability and levels of psychological stress was found. Specifically, mothers who believed that their child's impairment was more severe had higher levels of psychological distress. Optimism was the only resistance factor that resulted in a significant influence on measures of perceived control of internal states (i.e., stress). The authors suggest that cognitive interventions aimed at facilitating optimism may have a positive effect on maternal adjustment in this population (McLean et al., 2004).
A similarly positive correlation between the attitudes toward disability and self-concept has been reported in children with OBPP. Children with more positive attitudes demonstrate better self-concept in areas of social acceptance, athletic competence, physical appearance and global self-worth (Wijma, 2002). In this study, severity of disability did not have an affect on the self-concept of children with OBPP (Wijma, 2002) or on mothers' stress levels (McLean et al., 2004).
The Brachial Plexus Clinic at the authors' institution incorporates an interprofessional approach to assessment and treatment of children with OBPP. The team members include a plastic surgeon, orthopedic surgeon, physiotherapists, occupational therapist, nurse, social worker, and clinic administrative coordinator. The psychosocial interventions provided in the clinic include therapeutic relationships with individual professional(s), verbal and written medical literature, facilitating family to family support, social work, and a family support and education day.
Most typically, in the authors' institution's Brachial Plexus Clinic, the plastic surgeon and physiotherapist provide primary responsibility for the care the young infant receives in the clinic. The infant is typically seen for monthly clinic visits during the first 6 months of life, and occasionally seen at greater frequency with the physiotherapist to monitor passive range of motion of the limb. In this early period, the frequency of contact and intensity of involvement in the infant's care may foster a therapeutic relationship with these health professionals.
Family to family support is facilitated if difficulties with coping with the diagnosis or the recommended treatment are identified by child and family and/or any of the interprofessional team members. Families may also request this support when facing decisions regarding a specific surgical procedure. Family to family support involves matching families of children with a similar severity of brachial plexus injury, and a commonality in their journey in living with a brachial plexus injury. It is been reported in the literature that families of children with limb differences appreciate and benefit from the opportunity to connect with other families who have undergone similar experiences (Murray, Kelley-Soderholm, & Murray, 2007). This type of psychosocial intervention can help families cope emotionally, as well as provide a personal account on how to prepare for treatment procedures and what might be expected postoperatively.
BRACHIAL PLEXUS FAMILY DAY
In recognition of a requested and previously unmet need identified by the families, a support and education day was developed, called the "Brachial Plexus Family Day." The day consisted of a medical educational program and separate parent and teen (children ages 11 to 18 years) support groups that run concurrently during the day. Children under 10 years of age attended a separate program geared to their developmental age and stage. The parent support group had no direct professional involvement, although professional consultation was available (Gottlieb, 1982). The participants were broken into small groups. The teen group consisted of a semi-structured support group facilitated by the social worker and occupational therapist, and a breakout small group session. During the breakout session, the teens worked in groups of 2 or 3 on an exercise called "personal testimonies." The teens shared among themselves the challenges they experienced growing up with an OBPP and how they overcame these challenges. As a group, they wrote one of these challenges on one side of a piece of poster board (see Figure 1). On the back side, they wrote how they coped with or found solutions to this difficulty (see Figure 2). At the end of the Brachial Plexus Family day, the teens presented the posters to their parents, caregivers and the younger children to encourage all participants that it is possible to overcome the perceived barriers of living with a brachial plexus injury. The educational component consisted of a short lecture from the Staff surgeons as well as a question and answer period with members of the interprofessional team. The Program also included the inspiring testimony from a teenager regarding her experience growing up with an OBPP. This type of intervention is supported by Murray et al. (2007), who describes in their work with families with children with congenital limb differences that parents found support in appreciating their children's positive outlook, strength, and resourcefulness. The children's program included educational games, in which children learned about anatomy, a workshop on teasing, bullying, and self-esteem and an entertainment program in the afternoon. An anatomy activity consisted of tracing the outline of each child's body on large paper and decorating the upper limb with cut outs of muscles and nerves. The entertainment consisted of a fun, interactive and educational program with a variety of small animals and reptiles. Lastly, adult participants were invited to join a parent led and run online support group.
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Counseling and education regarding psychosocial issues is traditionally provided by the social worker in the Brachial Plexus Clinic at the authors' institution only on a part-time basis when a need is identified by the family or by a member(s) of the interprofessional team. Referrals are not made on a protocol basis. Similar to the challenges presented by Murray et al., (2007) in families of children with congenital limb differences, typical reasons for referral to social work are concerns of social development including bullying, teasing, peer curiosity, adjustment, and coping difficulties and assistance in promoting self-esteem in the context of growing up with a limb difference.
The purpose of this paper is to describe the results of the Quality Improvement project that aimed to: 1) to evaluate parental perceptions of the programs offered during the support and education day called Brachial Plexus Family Day, and 2) to evaluate parental perceptions regarding the psychosocial interventions offered through the authors' institution's brachial plexus clinic.
This study was first approved as a Quality Improvement (QI) Project through the authors' institution's Quality and Risk Management Department, and then was approved by the institution's Research Ethics Board for a retrospective review of the Quality Improvement questionnaires.
A support and education day called Brachial Plexus Family Day was held at the authors' institution in November 2009. A Quality Improvement Program questionnaire was distributed at the end of the day to evaluate the day's events and the perceived effectiveness of the psychosocial supports offered to the families through the Brachial Plexus Clinic. The questionnaire was developed by the first author and reviewed by the QI department for content and format at the authors' institution.
The evaluation was divided into two parts: a) Part 1 (Questions 1-3) Brachial Plexus Family Day Evaluation, and b) Part 2 (Questions 4-5) Evaluation of Types of Psychosocial supports. In Part 1, the families were asked to rate the components of the Brachial Plexus Family day on a 5-point Likert scale: very poor, poor, fair, good, excellent. They were also asked to indicate the ideal frequency (i.e., yearly, every 2 years, other) of holding this event and whether they would attend this event again.
Part 2 of the questionnaire asked the families to indicate which psychosocial supports they find helpful and at what developmental stage these supports should be introduced. The list of psychosocial supports were generated from the interventions offered at the authors' institution and the literature (Bellew & Kay, 2003). The option of four developmental stages was presented: at birth, infancy/toddler, school-age and teen years. The option to add items to the list of supports was also made available on the form. The results of Part 2 of the questionnaire will be used in this study. The families were asked to complete the questionnaire anonymously at the end of the event, with the option of mailing in the completed questionnaire at a later date.
Data was reviewed and collected on a password protected and encrypted spreadsheet, on a password protected computer. Descriptive statistics were used to compile the data from the questionnaires. The data from Part 2 of the questionnaire was collected by compiling the frequency of psychosocial supports indicated by the families that were helpful was complied. Second, the frequency of the developmental stage (i.e., at birth, infancy/toddler, school age, teenage) the respondents felt that each psychosocial intervention should be introduced was calculated.
Five hundred and 55 families attended the OBPP clinic during the 3-year period. Of the families who were mailed invitations, 241 families lived locally, six were from out of province, three were from out of country, and the remainder lived within the province. Thirty invitations were returned due to incorrect mailing addresses; however, the number of other undelivered invitations is unknown.
Sixty-nine families (n = 69 children with obstetrical brachial plexus palsy) attended the Brachial Plexus Family Day. The age range of the children with obstetrical brachial plexus palsy were 0-2 years (n = 9), 3-4 years (n = 6), 5-7 years (n = 17), 8-10 years (n = 21), 11-13 years (n = 8), and 14 + years (n = 8). There were 43 girls and 26 boys. Most children were registered to attend the event with a parent or parents. A few families (n = 6) included parent(s) as well as a grandmother, family friends, aunt, or uncle. All the children with brachial plexus palsy at the event had some degree of permanent impairment in active range of motion of their affected limb. Twenty-seven children had more severe impairments in their upper extremity including their wrist and hand. The remaining 42 had upper plexus brachial plexus injuries. Sixty-three questionnaires (n = 63) were completed out of the 69 families that attended the event. All of the questionnaires were returned on the day of the event. All the questionnaires were completed anonymously.
One hundred percent (n = 63) of respondents answered that they would attend the Brachial Plexus Family Day event again. Seventy-three percent (n = 46) of indicated that they feel that the event should be held on a yearly basis, 18% (n = 11) responded every 2 years, 6% (n = 4) responded every 6 months, and 3% (n = 2) families did not respond.
Table 1 summarizes the evaluation of the components of the Brachial Plexus Family Day. The different program components of the Brachial Plexus Family Day received a rating of "excellent" by the majority (range: 69% to 85%) of families that responded.
The type of psychosocial supports that the families indicated were helpful is represented in Table 2. Meeting other families living with OBPP and meeting other children with OBPP received the highest response. Ninety-seven (97%) of the respondents reported these two supports as helpful. Similarly, attending a Brachial Plexus Family Day event was ranked second as most important with 86% of responses. Connecting with surgeon or medical doctor and connecting with a physical or occupational therapist were 60%, and 59% respectively. Social work received the least number of responses (37%).
Table 3 illustrates the responses from the families regarding the timing of introduction of the different types of psychosocial supports. The respondents ranked "at birth" as the best time to introduce all the types of psychosocial supports, with the exception of "Meeting other children with OBPP." Forty-one percent indicated that it was best to introduce this support first at infancy, next at school age (32%), and then at birth (25%). The respondents also ranked infancy/toddler age, as the second most important developmental stage to introduce all these supports, with the exception of "join an internet support group," and "connect with a social worker." These supports were rated as more important to introduce at school age than in infancy.
The evaluation of the Brachial Plexus Family Day highlighted that the programs offered during this support and education event were highly regarded by the families in attendance. These families also indicated that they valued meeting with other families and children with a brachial plexus injury. The Brachial Plexus Family Day is one example of a support and education day that can provide an opportunity for mutual aid. Mutual aid groups are a forum for individuals with a mutual need to work together on common problems (Schwartz, 1961). Providing opportunities for mutual aid is recommended for this population not only because of its perceived importance from parents, but it provides a dimension of psychosocial support that the interprofessional team cannot provide through traditional counseling methods.
The benefit of mutual aid groups for families of children with disabilities has been well documented (Solomon, Pistrang, & Barker, 2001; Gottlieb, 1982). Comparative literature of families with children with congenital upper limb differences highlights that parents recognize the need to connect with other families with similar conditions. This includes participation in online support groups, family education days and meeting with other families who have a child with a congenital hand difference (Murray et al., 2007).
Shulman (1986) describes nine processes of the mutual aid group that illustrates the benefit of such intervention: sharing data, the dialectical process, exploring taboo subjects, "all in the same boat" phenomenon, emotional support, mutual demand and expectations, helping with specific problems, rehearsal (i.e., implementation of lessons learned from mutual discussion to every day life), and strength in numbers phenomenon (Shulman, 1986). Examples of the specific issues that may be addressed by mutual aid for this population are as follows.
The Brachial Plexus Family Day provided an opportunity for families of older children with OBPP to share their experience with younger families. Examples of sharing data included sharing experiences regarding their child's surgical procedure(s), physiotherapy exercises, splints, adaptive techniques or aids for activities of daily living, and how to cope with school and peer issues. Although the professional team may have provided this information in the past, families benefit greatly from hearing about the personal experience of other families.
Families who face mutual challenges can benefit from the dialectical process that involves debate and synthesis. For example, some families who attended the Brachial Plexus Family Day struggled with decision making regarding shoulder surgical reconstruction for their older child. In some situations, the affected teenager had adapted so well to their shoulder impairment that their level of physical functioning included high-level athletics or musical performance. Parents struggled with the pros- and cons- of proceeding with surgery at this late age. The opportunity to discuss the issues with other families facing the same dilemma may provide the necessary psychosocial process to move forward in making a decision, following the consultation with the staff surgeon. This is also an example of how mutual aid can help with specific problems facing one family or individual.
It has been the authors' experience that parents and caregivers of children with OBPP may face grief and anger related to their child's delivery. Families may blame the delivering physician or health professional for the circumstances surrounding the birth process. This may be a taboo subject because of the sensitive nature of the issue. Although this topic may be raised by families in the clinic setting, it is more often shared between families.
The structured activity for the teen support group at the Brachial Plexus Family Day provided an opportunity for the teens to share the challenges they experienced and how they cope with these issues (Figure 1 and 2). Through working on the "personal testimonies" poster presentations the teens identified that they were "all in the same boat." There was universality in their experiences with peers, teasing, and the assumptions from others that their physical impairment limits their athletic and overall abilities. Figure 2 also illustrates how the group process helped one teen discover that she is not alone in living with a brachial plexus injury and that there is indeed strength in numbers.
The commonality in sharing a diagnosis of a brachial plexus injury creates an environment for empathy and understanding. Parents, caregivers, and teens are able to express feelings knowing that others in the group will be able to identify. The group provides emotional support for one another through the universality of their struggles.
A support and education day also has the potential for cost savings as a group treatment approach. Many families can benefit from this intervention in one day. However, this can only be truly argued with a detailed cost-effectiveness analysis (CEA) whereby the cost of this intervention is compared to the effect of treatment in clinical units.
Providing education and the opportunity for a diversity of options for psychosocial supports at the time of birth of a child with OBPP is important to the parents that attended the Brachial Plexus Family Day. It is also important to note that the majority of families that attended the event (n = 54) had school-aged or teenaged children. Therefore, this response largely represents the reflections of what parents' experienced or would have liked when their child was first born.
The families also preferred to meet other children with the same medical condition later in infancy and into the school age years. At this stage, the family has had some time to process and understand their child's diagnosis. In later infancy, meeting a child with OBPP can provide continued adjustment, coping, support, and education for the family. In the school age years, both the parents and the child with OBPP may benefit from this type of psychosocial support.
Families' responses highlighted that they valued the opportunity to connect with the surgeon or medical doctor, physiotherapist and occupational therapist. This finding is also supported by the study conducted by Bellew & Kay, 2003. Health professionals play an important role in the management of the brachial plexus palsy during childhood. Providing empathy as well as education regarding the diagnosis is important to parents when they give birth to a child with a physical disability (Kerr & McIntosh, 1998). Families value the therapeutic relationship that professionals who work with this population can provide throughout their child's life span.
The lack of a standard referral protocol to social work may explain why many families that attended the Brachial Plexus Family Day may not have been familiar with the role and scope of services that the social worker can provide. One may speculate that this may have influenced the lower priority placed on the need for social work. Second, this evaluation also demonstrated that social work involvement may be best introduced shortly after a child's birth and again upon school entry. From our experience, it is not uncommon that issues related to teasing and bullying may arise upon school entry. Social workers and other interprofessionals with counseling expertise can help children and families problem solve during the school age years and teach antibullying and positive self-concept strategies.
The results of this paper should be considered within its limitations. This project must be evaluated in the context of a QI project. The sample consisted solely of families that participated in the Brachial Plexus Family Day. The results of this project cannot be extrapolated to the families who chose not to attend this event. Those families may differ in meaningful ways from the families that attended and may require other psychosocial interventions to address unmet needs. In the future, it would be valuable to obtain data to explain why families did not attend this event and their needs may differ.
Furthermore, this was the first OBPP family education and support day organized by the authors' institution for children with OBPP since the inception of the clinic approximately 20 years ago. Families and the clinical team have recognized the interest and need to develop such an event for several years. As a result, the response of the families to the questionnaires may have been positively skewed due to the long awaited anticipation of this event. As a result, their desire for psychosocial support may be somewhat inflated.
The Brachial Plexus Family Day, a support and education day, was highly rated by families who attended this event. These families valued the opportunity to meet with other families and children with the same condition. This type of family education and support day was demonstrated to be a valuable intervention for this population, and one likely to be repeated and studied.
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Kerr, S. M., & McIntosh, J. B. (1998). Disclosure of disability: Exploring the perspective of parents. Midwifery, 14, 225-232. doi: 10.1016/S0266-6138(98)90094-8
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EMILY S. Ho, MEd
ALISSA A. ULSTER, MSW
This article was published Online First August 15, 2011.
Emily S. Ho, MEd, BSc, OT. Reg. (Ont), Division of Plastic and Reconstructive Surgery, Department of Rehabilitative Services, The Hospital for Sick Children, Toronto, Ontario, Canada, and Faculty of Medicine, Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Ontario, Canada; Alissa A. Ulster, MSW, Res. Dip. SW, RSW, Division of Plastic and Reconstructive Surgery, Department of Social Work, The Hospital for Sick Children.
We thank Dr. Christopher Forrest and the Division of Plastic and Reconstructive Surgery, The Hospital for Sick Children for their support in this project.
Correspondence concerning this article should be addressed to Emily S. Ho, Division of Plastic and Reconstructive Surgery, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, Canada M5G 1X8. E-mail: firstname.lastname@example.org
Table 1 Brachial Plexus Family Day Evaluation Very poor raw Poor raw Fair raw Program (# of responses) score (%) score (%) score (%) Organization of event (n = 62) 0 (0) 0 (0) 0 (0) Venue (n = 61) 0 (0) 0 (0) 0 (0) Catering (n = 62) 0 (0) 0 (0) 4 (6) Medical lecture (n = 62) 0 (0) 0 (0) 0 (0) Q & A Medical Panel (n = 61) 0 (0) 0 (0) 0 (0) My story-teenager's testimony (n = 61) 0 (0) 0 (0) 0 (0) Child educational games (n = 45) 0 (0) 0 (0) 0 (0) WHIMZ (entertainment; n = 42) 0 (0) 0 (0) 0 (0) Teasing and self-esteem workshop (n = 40) 0 (0) 0 (0) 0 (0) Parent/teen support group (n = 45) 0 (0) 0 (0) 0 (0) Provide opportunity to network (n = 57) 0 (0) 0 (0) 0 (0) Good raw Excellent raw Program (# of responses) score (%) score (%) Organization of event (n = 62) 13 (21) 49 (79) Venue (n = 61) 10 (16) 51 (84) Catering (n = 62) 16 (26) 42 (68) Medical lecture (n = 62) 9 (15) 53 (85) Q & A Medical Panel (n = 61) 10 (16) 51 (84) My story-teenager's testimony (n = 61) 11 (18) 50 (82) Child educational games (n = 45) 9 (20) 36 (80) WHIMZ (entertainment; n = 42) 12 (29) 30 (71) Teasing and self-esteem workshop (n = 40) 13 (32) 27 (68) Parent/teen support group (n = 45) 11 (24) 34 (76) Provide opportunity to network (n = 57) 11 (19) 46 (81) Table 2 Percentage of Participants Who Found the Different Types of Total raw score (%) Psychosocial Support Helpful N = 63 Type of psychosocial support Meet other families living with OBPP 61 (97) Meet other children with OBPP 61 (97) Attend a brachial plexus family education day 54 (86) Join an internet support group 30 (48) Read medical literature 28 (44) Connect with own family and friends 33 (52) Connect with a social worker 23 (37) Connect with a therapist (OT/PT) 37 (59) Connect with a surgeon or medical doctor 38 (60) Table 3 Developmental Stage of Introduction of Psychosocial Supports Type of social support At birth raw Infancy raw (N = 63) score (%) score (%) Meet other families living with OBPP (n = 62) 39 (63) 15 (24) Meet other children with OBPP (n = 59) 15 (25) 24 (41) Attend a brachial plexus family education day (n = 62) 23 (37) 19 (31) Join an internet support group (n = 47) 26 (55) 5 (11) Read medical literature (n = 56) 39 (70) 8 (14) Connect with own family and friends (n = 51) 32 (63) 11 (21) Connect with a social worker (n = 53) 26 (49) 10 (19) Connect with a therapist (OT/PT; n = 55) 36 (65) 13 (24) Connect with a surgeon or medical doctor (n = 56) 43 (77) 5 (9) Type of social support School age raw Teenage raw (N = 63) score (%) score (%) Meet other families living with OBPP (n = 62) 8 (13) 0 (0) Meet other children with OBPP (n = 59) 19 (32) 1 (2) Attend a brachial plexus family education day (n = 62) 18 (29) 2 (3) Join an internet support group (n = 47) 9 (19) 7 (15) Read medical literature (n = 56) 7 (12) 2 (4) Connect with own family and friends (n = 51) 5 (10) 3 (6) Connect with a social worker (n = 53) 15 (28) 2 (4) Connect with a therapist (OT/PT; n = 55) 5 (9) 1 (2) Connect with a surgeon or medical doctor (n = 56) 5 (4) 3 (7)
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|Author:||Ho, Emily S.; Ulster, Alissa A.|
|Publication:||Families, Systems & Health|
|Date:||Sep 1, 2011|
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