Frequency,facilitators,and barriers for range of motion to prevent shoulder contracture in brachial plexus birth injury: A pilot study

Abstract

PURPOSE:

This pilot study investigated the efficacy of passive range of motion (PROM) during the first year of life to prevent development of shoulder contractures in children with brachial plexus birth injury (BPBI) and identified facilitators and barriers to caregiver adherence with daily PROM.

METHODS:

Five caregivers of children with upper trunk BPBI participated in retrospective interviews about the frequency with which they performed PROM during their child’s first year of life including facilitators and barriers to daily adherence. Medical records were reviewed for documentation of caregiver-reported adherence and documented evidence of shoulder contracture by age one.

RESULTS:

Three of the five children had documented shoulder contractures; all three had delayed initiation or inconsistent PROM in the first year of life. Two without shoulder contractures received consistent PROM throughout the first year of life. Making PROM part of the daily routine was a facilitator to adherence while family contextual factors were barriers.

CONCLUSION:

Absence of shoulder contracture may be related to consistent PROM throughout the first year of life; decreased frequency of PROM after the first month of life did not increase the risk of shoulder contracture. Consideration of family routines and context may facilitate adherence with PROM.

Keywords

Brachial plexus birth injury passive range of motion contracture prevention caregiver adherence

1 Introduction

Injury to the brachial plexus occurs in 1.5 out of 1000 live births [1]. The majority of infants with brachial plexus birth injury (BPBI), 70–80%, make a full spontaneous recovery, but 20–30% will have lifelong upper extremity paralysis or weakness [2 –4]. They may also develop muscle imbalances due to denervation of affected muscle groups, all of which leads to impairment in shoulder function [2 –4]. Treatment for BPBI includes surgical and non-surgical interventions including occupational therapy (OT), which is recommended to begin as early as possible, sometimes immediately after birth or at two weeks of age [4 –7]. A primary goal of early OT intervention is to improve and/or maintain shoulder range of motion due to the known risk of shoulder contractures within the first year of life [4 , 8–10]. Children who develop contractures may need subsequent surgeries throughout their lives and are less able to participate in meaningful occupations including activities of daily living (ADLs) due to limited upper extremity range of motion.

Therapists and physicians who specialize in treating infants and children with BPBI recommend that passive range of motion (PROM) be performed “at every diaper change,” [4] which according to The National Institute of Child Health and Human Development [11] is anywhere from every 1–3 hours in the first months of life, and every 4–6 hours as the child approaches one year of age. Clinically, it has been observed that children who receive consistent daily PROM for shoulder abduction and external rotation seem to avoid development of shoulder contractures while those who receive no or infrequent PROM seem to develop early and significant internal rotation contractures. However, there is no research to support the frequency of PROM at every diaper change as a means to prevent contractures. Asking caregivers to adhere to this schedule without evidence-based research may be placing an undue burden on families. Therefore, research is needed to establish and validate a standard of care in order to maximize outcomes for children with brachial plexus injuries. Additionally, because recommendations for frequent stretching at home are an important part of early intervention for BPBI, it is important to understand how families actually respond to the recommendations that are made and how therapists and physicians who treat BPBI can best motivate caregiver adherence to these recommendations. Therefore, this pilot study seeks to answer two questions: 1) what frequency of PROM is required to prevent shoulder contractures during the first year of life in children with BPBI, and 2) what barriers and facilitators affect caregiver adherence to home therapy recommendations for performing daily PROM?

2 Methods

This pilot study used a qualitative retrospective design in which caregivers of children with BPBI between the ages of one year to five years and five months reported their practice of and experience performing PROM during their child’s first year of life. The retrospective interviews also asked caregivers to identify facilitators and barriers to performing PROM as well as their opinions on the recommendations that therapists and physicians give to parents. In order to compare the caregivers’ retrospective reports about their PROM practices during their child’s first year of life, medical records were reviewed for self-reports of frequency of and adherence to PROM as documented during therapy and clinic visits. Medical records were also reviewed to determine whether a shoulder contracture was documented around the time of the child’s first birthday.

2.1 Sample

After receiving approval from the Institutional Review Boards of both authors’ primary affiliations, purposive sampling was used to recruit caregivers of children with BPBI between the ages of one year to six years and 11 months. All of the participants were former or current patients of the researchers; children who did not fall within the age parameters and/or those with a history of primary nerve surgery performed before one year of age were excluded from consideration for participation. Recruitment flyers were sent via email, text, and/or distributed in person during regular visits to a multidisciplinary brachial plexus clinic at a large urban hospital. The flyers described the purpose of the study and asked participants to engage in a 20–30 minute remote interview using a secure video meeting platform. Participants were offered their choice of a $25 Amazon, UberEATS, or Walmart gift card following their completion of the interview. A total of eight caregiver/patient dyads were contacted for participation in the study. Seven caregivers responded to the initial recruitment efforts and five consented to participate in the study, with children ranging in age from 20 months to five years, five months. See Table 1 for participant demographics.

Table 1
Demographic Variables

Participant Number Gender Child’s Age at Time of Study Age of Diagnosis Age PROM First Recommended Frequency of PROM in 1^st Month of Life Frequency of PROM in Months 2–12 of Life Documented Contracture

1 Female 22 months 3 days 3 days Every 2 hours when at home^a Every 3-4 hours Yes

2 Female 4.10 years Birth Birth Daily when sleeping or eating 2 times per day No

3 Male 24 months Birth 2 months –– 4-5 times per month Yes

4 Male 20 months Birth 3 weeks Every diaper change 2 times per day No

5 Female 5.5 years Birth 2 months –– 8–10 times per day Yes

Participant Number	Gender	Child’s Age at Time of Study	Age of Diagnosis	Age PROM First Recommended	Frequency of PROM in 1^st Month of Life	Frequency of PROM in Months 2–12 of Life	Documented Contracture
1	Female	22 months	3 days	3 days	Every 2 hours when at home^a	Every 3-4 hours	Yes
2	Female	4.10 years	Birth	Birth	Daily when sleeping or eating	2 times per day	No
3	Male	24 months	Birth	2 months	––	4-5 times per month	Yes
4	Male	20 months	Birth	3 weeks	Every diaper change	2 times per day	No
5	Female	5.5 years	Birth	2 months	––	8–10 times per day	Yes

Note. Data reported are from caregiver responses to retrospective interviews. ^aChild was out of the home/in daycare for 10 hours per day.

2.2 Procedures

Interviews were completed at a time that was convenient for the participants, and all were interviewed remotely while in their own homes via a secure videoconferencing platform. Verbal consent was obtained at the beginning of each interview; due to their ages, assent was not required from the child participants. The first author conducted each interview from their home office with no other persons present at any time. The interviews were transcribed by the first author and an entry-level doctoral OT student, and transcripts were coded to identify themes. Interview transcripts were deidentified and all interview recordings and transcripts were kept in a password protected file.

2.3 Data collection and instrument

The Caregiver interview was developed by the first author and approved by the second author, who served as Primary Investigator. Interviews included questions about the specific stretches and the frequency with which caregivers performed them during their child’s first year of life from the time they entered therapy until they reached one year of age. Questions also included demographic information such as their child’s current age and age at which their child was diagnosed with BPBI, as well as questions about therapy history and methods of training in performing PROM. Caregivers were also asked to identify the facilitators and barriers to complying with PROM recommendations, and to share what they would like specialists who work with children with BPBI to know when making home therapy recommendations regarding daily PROM. See Appendix A for a full list of interview questions.

In addition to the retrospective interviews, chart reviews were completed to determine whether the presence of a shoulder contracture was documented in the child’s medical history through the first year of life. Notes from weekly occupational therapy visits and visits to a multidisciplinary brachial plexus clinic were included in the chart review. Occupational therapy notes were also reviewed for evidence of caregiver reports of adherence or non-adherence to home PROM recommendations, as an attempt to validate retrospective reports obtained in the interviews.

3 Results

Five caregivers who were mothers participated in this pilot study. All five of the children had an injury to the upper trunk of the brachial plexus and had received outpatient or home-based OT at least once per week through their first year of life. Time of first visit with a brachial plexus specialist varied from three weeks of age to three months of age. Age that PROM was first recommended varied from birth to two months. Four of the five caregivers reported that PROM was recommended to be performed at every diaper change, while one reported being advised to perform PROM every two hours. All caregivers were trained to perform PROM by an expert occupational therapist. The frequency with which caregivers reported performing PROM varied with greater frequencies reported during the first month of life compared to the first year of life. See Table 1 for complete descriptive data.

When asked to report how frequently they performed PROM during the first month of life, three of the five caregivers reported high frequencies including every diaper change, every two hours, and every time the child ate; the other two reported that PROM was not recommended until their children were two months old. After the first month of life, frequency of PROM varied with no caregivers reporting “every diaper change” as their standard. Upon review of medical records, three of the five children had documented shoulder contractures at or around the age of one year. In one case where a contracture was present, the caregiver reported that PROM was not recommended until her child was two months old, and that she only performed PROM 4-5 times per month throughout their first year of life. The caregiver of the second child with a documented contracture reported that she generally performed PROM every 3-4 hours during the first year of life excluding the child’s first 14 weeks of life when they were in daycare, and later when the child was 10 months old and the caregiver was sick in the hospital. The caregiver of the third child with a documented contracture reported in her retrospective interview that she performed PROM 8–10 times per day during the first year of life, but a review of her medical record included multiple self-reports to the contrary. Finally, of the two children who did not have documented shoulder contractures, both caregivers reported that they performed PROM twice per day through the child’s first year of life, and in both cases the medical records indicated caregiver self-reports of adherence to daily PROM recommendations.

In order to identify facilitators to performing daily PROM, caregivers were asked what made it easy to remember to stretch their child. The theme of routines was reflected in the responses of all five caregivers who used daily routines such as diaper changes and meals. Statements included, “I just did it during diaper changes, she was already on the floor it was just easy,” “it was automatic when she was eating,” and “it just kind of went into the routine.” Caregiver number four referred to her routine of taking monthly pictures of her child as a reminder to keep up with stretching: “we were seeing results . . . you could see that within the month-to-month pictures I would take ofhim.”

In addition to routines, the theme of context emerged as well. Three caregivers spoke about the need for doctors and therapists to consider the context of the child and family situation when making recommendations for daily stretching. For example, caregiver three reported: “you just gotta be committed (but) it’s hard because everyone has their own situations.” Caregiver two said that recommendations should not require parents to “do more than what is really needed” and to know that parents will do “what’s gonna work best for (their) child.” In contrast to the previous statement but still reflective of the importance of context, caregiver four recommended telling parents to do more than they think they really should because “the everyday person is probably gonna do less than what you recommend so I think to say to do it at every diaper change you probably are gonna do it probably a little more than half of that time.” Relative to the theme of context, two caregivers noted that complying with daily stretching was easy for them because they were home with their child all day and had the time and opportunity to stretch frequently.

When asked to identify barriers to complying with daily stretching, the theme of context emerged again. Contextual issues included whether the caregivers worked or were home with their child along with caring for and meeting the needs of other family members and themselves. For example, caregiver one reported that her child did not get stretched during the day while in daycare and was developing shoulder tightness, so she decided to quit her job. Two caregivers noted times when their child, self, or other family members were ill as a barrier, such that the child couldn’t tolerate being stretched or the parent was caring for herself or others and was unable to keep up with stretching. Caregiver two reported that she was too tired on some days and that “it gets exhausting doing the same thing every day.” Finally, two caregivers noted the child’s temperament such that they didn’t stretch on days when their child was irritable or fussy.

In addition to reporting on their own behaviors regarding daily PROM, the caregivers were asked what doctors and/or therapists can do to make daily stretching easier and what else they would like specialists who work with children with brachial plexus injuries to know about the recommendations they make about stretching. Similar to the caregivers’ responses to what made it easy for them to remember to stretch their child, the two themes of routines and context were also reflected in the responses about what doctors and/or therapists can do to make daily stretching easier. The theme of routines was explicitly stated by caregiver one who recommended that doctors and therapists should tell parents to “work it into my routine.” Two caregivers spoke of the need for doctors and therapists to consider the context of the child and family situation. Caregiver three stated: “it’s hard because everyone has their own situations.” Caregiver two said that specialists should not ask parents to “do more than what is really needed” because parents will do “what’s gonna work best (forthem).”

4 Discussion

The purpose of this pilot study was to determine whether performing PROM at every diaper change during the first year of life is an effective intervention to prevent the development of shoulder contractures in children with BPBI, and to identify facilitators and barriers that affect caregiver adherence to performing daily PROM. Three of the five children in the sample were found to have a shoulder contracture documented in their medical record around the time of their first birthday. In two of these cases, PROM was performed infrequently during the first month of life and inconsistently during the first year of life; in the third case, while the caregiver retrospectively reported performing PROM at every diaper change, this was not reflected in subjective comments documented in the medical record. In contrast, the two children who did not have shoulder contractures reportedly received PROM at every diaper change or feeding during the first month that it was recommended, and twice per day consistently thereafter during the first year of life. These findings suggest that there might be a critical period during the first month of life where PROM should be performed at every diaper change. The findings also suggest that consistency in performing PROM might be more important than frequency as the child gets older. Further research on these hypotheses can provide added motivation for caregivers to comply with recommendations for daily PROM at home.

In order to facilitate consistent adherence to PROM recommendations, therapists and other medical specialists should consider a family’s unique routines and context. The transactional relationship among persons with their routines and context is a foundational tenet of best practice in occupational therapy [12]. All five of the caregivers in the sample not only positively referenced pairing PROM with a daily routine as a way to make it easy for them to remember, but two of the caregivers specifically recommended that specialists who work with BPBI should use routines as a guide for when to perform PROM. Occupational therapists are uniquely qualified to develop intervention plans that work PROM into a family’s routines while considering the family context in order to reduce potential barriers to complying with high frequencies of daily PROM. Based on the finding that PROM may only be needed twice per day after the first month, caregivers with contextual barriers such as work obligations or children in daycare might feel less overwhelmed and more empowered to keep up with a less demanding PROMschedule.

4.1 Limitations

The primary limitations of this pilot study are the small sample size and the use of a purposive sample, both of which are appropriate for a pilot study but also limit the generalizability of the findings. Because the participants were all known to the researchers, the findings might be limited by participant bias; however, in an attempt to minimize the effect of participant bias the interviewer prefaced each interview with a statement that they would not judge the caregivers on their responses, and they knew each participant would be honest with them. The reliance on retrospective recall of behaviors around PROM is also a limitation. However, the reliability and validity of caregiver responses was supported via chart reviews.

4.2 Recommendations

Additional research is needed before making generalizations about the findings of this pilot study. Research is needed to determine whether the first month of life truly is a critical period during which higher frequencies of PROM are indicated, and whether consistency with PROM is more important than frequency as the child gets older. Future research should include a larger sample size and participants who are unknown to the researchers. In addition, future research should ask caregivers to track their daily PROM rather than relying on retrospective reports.

5 Conclusion

This pilot study sought to answer two questions: 1) is PROM at every diaper change during the first year of life an effective intervention to prevent the development of shoulder contractures in children with BPBI, and 2) what facilitators and barriers affect caregiver adherence to performing daily PROM? The findings suggest that PROM should be performed at a high frequency, such as at every diaper change during the first month, but that a lower frequency of PROM may be sufficient at preventing contractures as long as it is performed consistently. Caregivers unanimously reported that tying PROM recommendations into the family’s routine helped them remember to do it, and that issues related to the family context can be a barrier to adherence. In order to maximize functional outcomes for children with BPBI, occupational therapists can use their expertise in analyzing and understanding routines and context to maximize the fit between the needs of a family and recommendations for daily PROM.

Footnotes

Acknowledgments

Funding for this pilot study was provided by a grant from the Office of Sponsored Programs and Research at Towson University. We thank Megan Lieb for her assistance with data management and organization. We also thank the families who participated in this pilot study.

Conflict of interest

We have no conflicts of interest to disclose.

The appendix is available in the electronic version of this article: .

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