Shared decision making in youth with brachial plexus birth injuries and their families: A qualitative study

Ho, Emily S.; Parsons, Janet; Davidge, Kristen M.; Clarke, Howard M.; Wright, F. Virginia

doi:10.1016/j.pec.2021.03.017

Cited by 5 publications

(2 citation statements)

References 26 publications

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“…Although a traumatic radial nerve injury is distinct from compressive neuropathy, prior qualitative studies of patients awaiting or undergoing carpal tunnel release demonstrated the importance of return to desired activities 24 and appropriate recovery expectations 25 . Among patients with traumatic brachial plexus injury, patients expressed that positive engagement with, and trust of, their health-care providers (including appropriate setting of expectations) 18 led to greater satisfaction with the delivery of care and acceptance of their condition 20,26,27 . Similar lessons can be drawn from our analysis.…”

Section: Discussionmentioning

confidence: 99%

Expectant Management, Tendon Transfer, or Nerve Transfer Surgery for Radial Nerve Injury

Lieberdorfer

Shivakumar

Stonner

et al. 2023

Journal of Bone and Joint Surgery

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Background: After a radial nerve injury, patients must weigh a complicated set of advantages and disadvantages to observation or surgery. We conducted semistructured interviews to characterize the decision-making process that these patients undertake. Methods:We recruited participants who were treated with expectant management (nonoperatively), received only a tendon transfer, or received a nerve transfer. Participants completed a semistructured interview that was transcribed and coded to identify recurring themes, to describe the influence of qualitative findings on treatment decision-making.Results: We interviewed 15 participants (5 expectant management, 5 tendon transfer only, and 5 nerve transfer).Participants' primary concerns were returning to work, hand appearance, regaining motion, resuming activities of daily living, and enjoying hobbies. Delayed diagnosis and/or insurance coverage led 3 participants to change treatment from nerve transfer to isolated tendon transfer. Interactions with providers early in diagnosis and treatment had strong effects on how members of the care team were perceived. The hand therapist was the primary person who shaped expectations, provided encouragement, and prompted referral to the treating surgeon. Participants valued debate among the care team members regarding treatment, provided that medical terminology was explained.Conclusions: This study highlights the importance of initial, collaborative care in setting expectations for patients with radial nerve injuries. Many participants named returning to work and hand appearance as primary concerns. Hand therapists were the primary source of support and information during recovery.Disclosure: The Disclosure of Potential Conflicts of Interest forms are provided with the online version of the article (http://links.lww.com/JBJS/H432).

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Section: Discussionmentioning

confidence: 99%

Expectant Management, Tendon Transfer, or Nerve Transfer Surgery for Radial Nerve Injury

Lieberdorfer

Shivakumar

Stonner

et al. 2023

Journal of Bone and Joint Surgery

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“…A pragmatic application of theory and research methods was necessary to operationalize and define aspects of the criteria within the 10 IPDAS dimensions (Table 1) and address the known methodological gaps in PtDA development. 21 Phase 2 involved two parts: (1) applying an interpretivist qualitative approach 22,23 to conduct a needs assessment of PtDA stakeholders using in-depth interview and participant observation methods in a brachial plexus clinic to determine decision-making needs and preferences for PtDA format, [24][25][26] and (2) synthesizing the evidence on elbow flexion contractures using scoping and systematic review methodologies. 4,6 Phase 3 involved consolidating the evidence from phase 2 to create the PtDA prototype, which included an explicit questionnaire-F I G U R E 1 Flow chart of the four phases of patient decision aid (PtDA) development based values clarification method that was developed using measurement principles (eg, avoid negative statements, double-barreled items).…”

Section: Study Design and Participantsmentioning

confidence: 99%

Developing a decision aid for youth with brachial plexus birth injuries facing treatment decisions for an elbow flexion contracture

Parsons

Davidge

et al. 2021

PM&R

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Background A common sequela of brachial plexus birth injury (BPBI) is an elbow flexion contracture. Youth with BPBI and their families face rehabilitation or surgical decisions that ideally entail careful deliberation of the risks and benefits of treatment within the context of the child's and family's functional and appearance‐related goals. Objective To develop a patient decision aid (PtDA) following International Patient Decision Aid Standards to help these youth and their families make treatment decisions. Design Mixed‐methods study. Setting Brachial plexus clinic in a pediatric tertiary care center. Participants Five young adults (21–24 years), 14 youth (8–19 years) and their parents, 15 families (children 2–16 years), and 19 clinicians from a brachial plexus clinic participated in the PtDA development. Seventeen other youth (8–18 years) facing treatment decisions regarding their elbow contracture field tested the PtDA prototype. Interventions Not applicable. Main Outcome Measures In‐depth interviews and participant observation to conduct a decisional needs assessment of young adults, youth, parents, and health care professionals involved in these shared decisions. Cognitive interviews to field test the PtDA prototype. Results Evidence from previously conducted knowledge synthesis and the youth‐focused decisional needs assessment qualitative data informed the development of new PtDA prototype, which included a questionnaire‐based values clarification method for youth to rate what matters most to them regarding their elbow function, appearance, psychosocial impact, and treatment options. The majority (90%) of youth >11 years who field tested the PtDA prototype understood its content, whereas only 29% of those between 8 and 11 years demonstrated independent comprehension. The majority (69%) responded that they would prefer to use the PtDA on their own either at home or in the clinic waiting room. Conclusions This new PtDA can be used to help youth with BPBI and their families to make a personal value‐based informed decision regarding treatment options for their elbow flexion contracture.

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Shared decision-making and its influencing factors among parents of children with cancer in China: A cross-sectional study

Han,

Zhou,

Tang

et al. 2024

European Journal of Oncology Nursing

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Shared decision making in youth with brachial plexus birth injuries and their families: A qualitative study

Cited by 5 publications

References 26 publications

Expectant Management, Tendon Transfer, or Nerve Transfer Surgery for Radial Nerve Injury

Expectant Management, Tendon Transfer, or Nerve Transfer Surgery for Radial Nerve Injury

Developing a decision aid for youth with brachial plexus birth injuries facing treatment decisions for an elbow flexion contracture

Shared decision-making and its influencing factors among parents of children with cancer in China: A cross-sectional study

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