The Unlimbited Wellness program addresses the current health care needs experienced by a population of individuals with upper-limb loss or difference (ULL/D) and the challenges to access comprehensive specialized care. The Unlimbited Wellness program is presented as a platform to mitigate challenges, offer resources to improve understanding of secondary conditions, learn strategies for self-advocacy, and access peer support.
BACKGROUND AND NEED
According to information posted by the Amputee Coalition,1 there are approximately 2,000,000 Americans who have experienced limb loss or congenital limb difference and another 28,000,000 Americans at risk for amputation. There are approximately 2,000 Americans who experience new upper-limb amputations at or proximal to the wrist annually. This level comprises the greatest portion of the ULL/D population.2 The ratio of individuals with ULL/D to individuals with lower-limb loss is 1:4.1 Individuals with ULL/D may attend a peer support group; however, they are typically outnumbered by participants with lower-limb involvement. This population presents with different needs, experiences, and expectations. For this reason, many persons with ULL/D do not attend events offered to the general population of people with limb loss.
Individuals who experience limb loss/difference often report being given little to no information from medical professionals about secondary conditions.1 Recently, Sheehan and Gondo3 reported on the effects of limb loss in the United States and care provided. They recognized that each well-trained member of a specialized amputation rehabilitation team has a specific and critical role in the care and recovery of people with limb loss. They cited the need for interventions to address secondary conditions affecting both physical and mental health. Current standard medical treatments may address some physical overuse but often exclude psychosocial interventions. Some researchers contend that without active medical surveillance “those with limb loss in America have been forgotten in the health care system.”3(p 9)
Individuals with ULL/D could benefit from a specialized rehabilitation program that is often challenging to access. The population experiences greater disparities because of the unaddressed and unmet needs.
NEED FOR COLLABORATIVE CARE
In separate studies, several authors point to the need for an international, interprofessional collaboration to create core outcome sets relevant to the population of individuals with ULL/D and prosthesis use.4,5 Findings reemphasized the need to improve communication, noting that barriers relating to language, culture, and a lack of common terminology have stifled collaboration. This dialogue would enable a more unified approach to the functional measurement of prosthesis use and may prevent disparity to the allegedly sound upper limb.1
SECONDARY CONDITIONS INCLUDING PSYCHOSOCIAL IMPACT
Individuals who experience unilateral ULL/D are likely to experience secondary conditions related to overuse of the sound upper limb. Many authors have documented the presence of pain and musculoskeletal conditions affecting the function of the sound arm in the population of individuals with unilateral ULL/D, agreeing that continual patient education and interprofessional follow-up is essential to prevent further functional loss.6–9
Murray10,11 explored factors toward adjustment and social meanings surrounding the use of prostheses. He suggested that the valued personal identities and the self-management of patients' ability status should be a priority for the health professionals involved in prosthesis users' medical care and personal development. To users, prostheses are more than tools; when embodied, the prostheses represent deeply personal meanings that revolve around mastery with the technology, management of personal information, and self-identity.11
NEED FOR PROSTHETIC TRAINING
Several authors reported on the importance of specialized occupational therapy (OT) services in an interprofessional team to address prosthetic acceptance, training, and transition to functional tasks.4,5,12,13 Others have suggested specific OT interventions for prosthetic training with the sound hand to transfer useful information to the prosthesis.14 In addition, researchers have reported using body-powered prosthesis simulator technology in various stages of prosthetic and preprosthetic training.15–17 This technology has also been utilized in the clinical preparation for practitioners to support successful outcomes for functional ability, realistic expectations of the technology, and acceptance of a prosthesis.18
ACCESS TO CARE AND TELEHEALTH
Unfortunately, access to specialized care for many consumers of upper-limb prosthetic technology is difficult. The National Commission on Orthotic and Prosthetic Education (NCOPE) sponsored a 2006 study relating to the care of individuals with upper-limb loss.19 The commission examined registries of professional organizations likely to serve this population and found that there were 3,500 certified prosthetist/orthotists (CPOs), 7,000 physiatrists, and 80,000 OTs practicing in the United States. The data extracted by researchers2 of 2,000 new upper-limb amputations per year in the United States imply that each CPO may see an individual with recent loss every 18 months; a physiatrist would see one every 3+ years, and an OT may see one every 40 years.
Often, care of ULL/D individuals requires specialized training not readily available to clinicians.13 In these instances, access to a clinician who is expert in prosthetic technology and its training can be challenging. Cary et al. reported that individuals in underserved rural areas faced many barriers to specialized rehabilitation services and described the benefits and challenges of using telehealth (TH) to deliver rehabilitation services to rural veterans. The authors concluded that specific TH could improve access to rehabilitation services for veterans and other individuals with specialized needs living in rural environments. They projected that the technology will further develop novel integrative processes to improve care and its outcomes.20 In separate studies, researchers investigating the use of TH technology for rehabilitation found that interventions offered improved function with successful goal attainment to participants at lower cost than traditional rehabilitative homecare services, were a practical option for delivery of services, and may be transferrable to other populations.21,22
Additional researchers analyzed and described a structured overview of available literature relative to TH for 10 years (1998–2008) to disclose the current state of practice with this technology. The authors concluded that literature focused on the clinical applications and technologies but lacked evidence to support decision and policy makers to adopt, integrate, and reimburse TH technologies in clinical practice.23 More recently, a proposal was submitted for a scoping review of TH to evaluate its effectiveness for the delivery of rehabilitation services.24
TH offers an opportunity to collaborate and consult with other health care providers when a client population is in other areas of the country and may provide cost savings. Requirements of such a program include compliance with state and federal laws and adherence to the policy of the American Occupational Therapy Association (AOTA).25 An AOTA position paper outlined the requirements that include “application of evaluation, preventative, diagnostic, and therapeutic services via two-way or multipoint interactive telecommunication technology”26(p 1) and noted the benefits of this service delivery model.26 Also, the American Telemedicine Association (ATA) offered a blueprint for TH management that is recognized and used by professional organizations to establish guidelines for care. Professional licensure in the state in which the client is located is required in addition to licensure where the practitioner is based.27
The current Healthy People 2020 program states that specific attention from health care and public health professionals is necessary to address the needs of populations and to prevent further disparities.28 It is vital for the population with ULL/D to receive specialized care for the presenting multi-faceted challenges.
The needs assessment was conducted to determine the gaps in care and consisted of two parts. The first was conducted with Handspring Clinical Services,29 a prosthetic practice specializing in upper-limb prosthetic technology. The target group included five clients aged 50 years and older, presenting with congenital transradial difference, who voluntarily participated in a semistructured focus group (FG) using a secure ;teleconference platform. Attendees participated in individual preliminary and follow-up interviews to complete the 11-question version of the Disability of Arm, Shoulder, and Hand (QuickDASH)30 outcome measure and the McGann Client Feedback Form-Modified (MCFF-M).31 The results were compared to determine if peer group experience might alter self-perceptions of ability, quality of life, and prosthesis satisfaction. Table 1 offers demographic information about the participants, including scores from the pre- and post-FG interviews. The difference in pre-FG versus post-FG using the Q-DASH and MCFF-M reveals an upward trend in perceptions of ability and satisfaction after this one peer interaction. The results of part 1 coincide with the published evidence. Table 2 depicts the comparison between the literature review and the FG. This sole FG experience offered insight to the potential impact of peer input and influence during an actual multilayered program. It poses the question, if nominal beneficial change can be detected after one strategic interaction, then how much greater might be the impact of several planned interactions?
In part 2 of the needs assessment, OTs practicing in the community were queried via Internet survey about their perceptions of preparedness, skill acquisition, and confidence to understand upper-limb prosthetic technology and to provide specialized intervention. Items included participant demographics as well as 23 statements about knowledge, comfort, confidence, and competence to provide care and prosthetic training to individuals with ULL/D, as well as use of TH. Figure 1 depicts partial demographic information. All respondents acknowledged they would experience greater competence with consultation from an OT specialist, and most stated they would consider such consultations via TH. Table 3 offers a partial lens to the survey results. This survey informs the needs assessment about the gap in perceived OT-generalist practitioner knowledge and competency to provide treatment to this population, the need for specialist consultation, and the use of TH to provide information, education, and support.
PROGRAM OVERVIEW: UNLIMBITED WELLNESS
PROGRAM DESIGN AND DESCRIPTION
Unlimbited Wellness is a program designed to link members of the target population as peers, inform them to diverse secondary conditions with shared strategies to prevent further disparity, and offer access via TH. This program instituted a TH platform to address some of the needs of the population of adults with congenital ULD because it has the potential to bridge discrepancies in care. Clients with congenital unilateral ULD at stages of the rehabilitation process were invited to participate in an educational, interactive program offered in three modules held over 12 weeks. The OT and the participants shared group facilitation during alternate weeks of the modules. Each module offered a focus for the discussions and collaborative activity. These general topics included experiences with overuse and secondary physical conditions, self-advocacy to health care providers, and experiences related to awkward social situations and secondary conditions relating to psychosocial health. Because the topics related and built upon each other, participants could apply knowledge to new areas. Participants attended meetings using videoconferencing accessed via a secure, Health Insurance Portability and Accountability Act-compliant server. They shared specific information relevant to physical conditioning, prevention and protection strategies, stress management, peer support, and resources to minimize further physical and/or mental health disparities and the effect of secondary conditions. They also discussed promoting a healthy and safe community environment.
The needs assessment and the program development were designed using the precaution adoption process model (PAPM),32 with supporting evidence specific to upper-limb prosthetic rehabilitation and the use TH to improve access to specialized care. The PAPM paired well with this program because it offers a linear and systematic progression of seven steps toward change, including the choice of no change. The stages of the PAPM are dynamic and a population journeys through them progressively; individuals may revert to a prior stage, decide not to act, or move forward. Program implementation and evaluation used the logic model because its linkages between the participants, resources, and outcomes help to identify the measures of performance.33 This model offers a sequential “if/then” type of deduction with each step of the process building upon the next and considers the elements of accountability (relevance, quality, and impact) to facilitate buy-in from stakeholders. The logic model considers the situation, or a statement of the problem, and how it affects a population and the resources such as time, funds, materials, and knowledge in relation to the program/services offered and how these collectively produce the desired outcome.
The community practice offered resources required for this pilot program. Support included access to client data for inclusion and the secure Skype for Business platform through which the program was offered. There were no additional costs for the service because it is part of a previously purchased bundled package. The program manager donated time for all related services that included preparation, facilitation, and follow-up for group sessions. There were no costs for materials or space for this virtually run TH program. Participants attended the program free of charge.
PROGRAM GOALS AND SPECIFIC OBJECTIVES
The overarching goal of this program was to use TH to improve understanding of physical and psychosocial health conditions that are related to the ULL/D, learn strategies for self-advocacy, and access peer support. Specific objectives included that participants would:
- identify three strategies to prevent/protect against further physical disparities;
- successfully use teleconferencing to access peer support;
- identify three strategies to manage awkward social situations; and
- identify three strategies for self-advocating in medical as well as social situations.
The program was held over 3 months, meeting one session/week during months 1 and 3 and one session every 2 weeks during month 2. Table 4 describes the timeline of activities. Before the first session of each module, participants were provided with an incomplete tip sheet. For example, the overuse and related secondary conditions tip sheet contained a list of most likely conditions that may affect sound anatomy, descriptions, and common interventions. Additional columns for group contribution included preventive strategies and adaptive techniques. During each session, participants collaborated to complete the tip sheet to inform people with ULL/D of likely secondary conditions and to share personal tips and techniques with each other. The program manager supplied each participant with an updated tip sheet before the next meeting. This strategy offered participants an opportunity to prepare their thoughts and contribute during the next session. Each participant agreed to attend at least 7 of 10 sessions to facilitate the group process, peer engagement, collaboration, and the opportunity to make informed decisions for themselves.
Program evaluation materials were organized to include the Pizzi Health and Wellness Assessment (PWHA), originally named the Pizzi Holistic Wellness Assessment,34 the MCFF-M, and a custom survey to access beliefs around program contact, the peer experience, and TH use. Three partially completed tip sheets served as the framework for collaborative peer activities during the sessions.
The Handspring database, accessed for the needs assessment, served as a resource to recruit participants. The target group consisted of clients aged 35 years and older presenting with congenital transradial difference that may or may not use a prosthesis. Five individuals responded to invitations, and four of these committed to group participation, agreeing to the session times and attendance. One of these dropped out due to family illness. The program manager conducted 1:1 preprogram interviews via telephone that included interactive tutorials to the use of the Skype for Business program. The program manager served as the initial facilitator, alternating this role with participants. Table 5 offers a brief description of participants.
Each participant received an email reminder, meeting invitation and an incomplete tip sheet template relevant to the specific topic before each meeting. The intent of the templates was to serve as preparatory worksheets, springboards for discussion, and, in their final state, resources for use.
The focus of the first module was physical overuse, with all participants contributing to the completion of the tip sheet. Some of the tips shared included asking for special utensils, avoiding asking for help, but doing so if needed, intentionally seeking alternatives to avoid requesting or being in a position of needing help, scrutinizing the environment, and being patient with self and with others. This module transitioned to the topic of medical visits and experiences with primary care and specialist providers.
Module 2 focused on visiting the primary care physician, which participants agreed was usually an all-or-nothing experience, because providers either acknowledge the limb difference or may ignore it. All agreed that the typical sequence included physician focus on the limb difference, patient explanation of symptoms affecting the opposite side with request for recommendation or specialist, followed by a merry-go-round experience of specialty providers trying to figure things out. The results of the dialogue led to development of a provider worksheet that included references for generalist and specialist providers. Participants were provided with this resource, reviewing it as a group, and agreed to use the document with providers and report on their experiences. Module 2 was designed to be peer-led and social in nature. These two sessions, however, emerged as purposeful with use of the new form and continued discussion.
There was a 2-week hiatus before module 3, during which participants completed a custom interim survey. Results showed participant agreement to improved awareness and understanding of secondary conditions and to learning strategies. Some members expressed challenges to attend weekly meetings given other obligations. During module 3, group members pursued the topic of awkward social experiences. These types of experiences can include answering questions, responding to stares from strangers, offers to help versus requests for help, greetings, if/how to disclose the limb difference to others, and perceptions of isolation. Participants worked collectively to contribute personal strategies, preferences, and dislikes to complete a tip sheet. The final meeting of the group was peer facilitated, and participants summarized the topics presented throughout the program. Each participant expressed satisfaction and gratitude for the peer experiences, shared strategies, and the impact of the TH connection.
The program evaluation followed the logic model (Figure 2), using measures that offered comparative perceptions to pre- and post-group experiences. These measures included an online customized survey, independent completion of the MCFF-M, and a 1:1 interview during which participants completed the PHWA, cited learned skills/knowledge, and supplied anecdotal comments regarding the program.
After the final Unlimbited Wellness session, the facilitator contacted each participant to provide a link to the post-group online custom survey and MCFF-M, and to schedule 1:1 closing interviews. For the post-group evaluation, the facilitator offered members a choice of telephone or TH interview. Each participant chose TH, stating similar reasoning, generally that it offered a visual representation, was easy to use, and was more personal, as if we were together.
All participants completed the custom survey anonymously. Initially, five individuals committed to program participation and completed the survey. However, one individual never participated and a second dropped out due to family complications. This left three participants who completed the mid- and post-program surveys. Questions on all surveys were related to beliefs about secondary conditions, isolation, social issues, and TH. Participants rated each statement based on a five-point Likert scale ranging from strongly disagree to strongly agree.
The PAPM identifies and describes the process by which individuals embrace, reject, or accept, and if accepted, then incorporate information into action. The anecdotal comments from participants are rich with insight to how the Unlimbited Wellness material and peer group process used such change. Such commentary is best portrayed when compared with initial hopes outlined by participants, outlined in Table 6. General themes were the opportunity to learn from peers through shared experiences, improved awareness of diverse secondary conditions, diminished perception of isolation, and contributing to help others.
MCGANN CLIENT FEEDBACK FORM-MODIFIED
Two participants used prostheses and completed the MCFF-M independently, returning them to the program manager for discussion during the 1:1 interview. According to pre- and post-group data, scores relating to prosthetic satisfaction of both individuals showed improvement by a mean of 12 points; in addition, the prosthesis nonuser moved from no interest in prosthetic technology to interest with action as he scheduled a consult with evaluation to initiate authorization. This action demonstrates the effect of the PAPM in the program. Table 7 depicts individual scores.
PROGRAM GOALS AND PWHA
The program manager conducted individual TH interviews with participants after the final group meeting. Individuals were questioned about their Unlimbited Wellness experience, including discussion of the program goals. All participants met the goals; they attended 7 of 10 sessions, used teleconference to access peer support, and were able to identify strategies to prevent/protect against further physical disparities, manage awkward social situations, and self-advocate in medical and social situations. Participants completed the PHWA. Post-group responses of all participants revealed increases in scores reflected in every domain of health perception (Table 8). Most notable improvements appeared in physical health (+2.3), mental/emotional health (+1.0), and spiritual health (+1.0) with numeric score increase as well as reflective commentary, further discussed in Conclusions. Such anecdotal evidence speaks to the process by which participants engaged, shared, and fostered input, encouraged one another, and then implemented the strategies learned. This process is aligned with the PAPM and the logic model.
The Unlimbited Wellness pilot program provided health promotion and wellness to adults with upper-limb acquired loss or congenital difference by providing opportunities for education and meaningful occupation. The target population was generally uninformed and unaware of the likelihood of secondary conditions related to limb reduction, yet all experienced problems. Individuals with ULL/D often experience isolation and social stigma; the intrapersonal processes of meeting with one other appeared to be a positive impetus for behavior change, social identity, and support as evidenced by participants' anecdotal comments.
When asked if there was any other information they would like to share during the postprogram interview, one participant stated:
“(the program) gave me backbone; I learned strategies to deal with situations in public without making me feel angry or a lesser being. I now feel less self-conscious and have more confidence. Contributing to group projects made me feel like I was doing something important, and I was learning by doing. I felt invested in this group even though we were far apart from each other.”
Another participant summarized:
“This program's content and the interactions opened my eyes to possibilities. I have been very worried about overuse; now I know what to do, and I've begun to make changes. I feel better ‘armed’ with information and resources for my PCP. Most importantly, I realized I am not alone and that I was a part of something that helped others and myself. I made friends with people who could relate to me.”
When posed with this same request, a third participant expressed:
“…even things that were uncomfortable became comfortable because of the context of familiarity with anonymity. Unlimbited Wellness made a difference in my confidence to speak about my limb difference and my prosthesis, especially in public with strangers. I felt like I was not alone, and being a part of something with like-peers gave me a different perspective in that I feel much more approachable and comfortable. I am less likely to sound angry, and I want to make a difference for the next person.”
Throughout the program, participants actively worked with one another to create tip sheets for personal use. Once informed and empowered by peer and activity engagement, individuals chose to accept and even act on the new information that included embracing new strategies and behaviors. A poignant moment occurred when it became apparent that none of the participants had realized that they were all clients of the community partner. The discussion relative to aspirations began with one participant stating he hoped to help Wounded Warriors learn to golf; another participant wept and stated learning to golf was a lifelong dream, that she was getting a prosthesis and hoped this would help her. The first participant encouraged the other, stating that he was confident she could. She stated that she was visiting New York from Florida to receive her device and training in its use. The first participant stated that he lived in New York and offered to help. One detail led to another, and the participants discovered that it was possible for both participants to meet to show the golf device as part of her OT session. The interaction revealed the interpersonal impact that TH, although a distance delivery, could offer in connectedness to health and wellness and to making a difference.
The program implementation was successful as evidenced by the strength of PHWA scores. The overall strengths were the program focus on health and wellness directed toward a population that experiences isolation and a program design that involved peer engagement toward a common goal. In addition to the group dynamics and participation, another strength was the sequence of topics that flowed seamlessly into each other. The modules themselves were distinctive; however, the transition from one topic to the next moved naturally.
A weakness and threat to the program involved the time commitment expected of the participants, particularly during the holiday season. Solutions would include fewer sessions and avoiding common holiday and vacation times. The small number of participants was also a threat. The likelihood was great that no one would attend a session; this occurred one time when all participants experienced power outages in their geographic areas.
Both challenges and opportunities were met by group consensus. When the opportunity arose to expand the Accessing Medical Providers tip sheet, the participants discussed it before moving forward. This allowed the group to direct the module related to accessing medical care including the creation of a medical information organizer that also offered resources to generalist practitioners. Participants agreed between themselves to use this tip sheet during upcoming individual medical visits and discussed their experiences later in the program. When all participants missed the last session due to the outage, it was the group who decided to meet an additional time to gain closure of topics and with each other.
TH, although intimidating initially, appeared to provide an appropriate vehicle through which to connect individuals. The technology proved to be useful to bridge the gaps of isolation and access to information. TH played an important role in the result of positive changes in health behavior. For the community partner, the use of TH illustrated the use of a tool through which to reach clients for other prosthetic rehabilitation services. Clients viewed the provision of the Unlimbited Wellness program as an investment in them. This was noted in patient satisfaction surveys used by the community partner and separate from the Unlimbited Wellness program surveys. Such an impact, which was unanticipated, increased the perceived value of the program to the corporate leadership because the prosthetic industry including reimbursement is partially driven by patient satisfaction. The program itself is reimbursable and offered profit from a marketing perspective.
LINKAGE TO HEALTH MANDATES
The National Prevention Strategy (NPS) encourages partnerships between diverse organizations in the public and private sectors on all levels to improve the health of Americans through prevention. The initiative has created priorities to facilitate healthy and safe communities, increase clinical and community-based preventive services, empower people to make healthy choices, and eliminate health disparities.35 Similarly, the World Health Organization has created an initiative using individual- and population-based interventions to promote health and prevent disease with specific direction toward health inequities and social determinants.36 Both health promotion and disease prevention share overlapping goals between these directions.
The Unlimbited Wellness project appears to address the NPS strategic directions and the priorities of active living, injury and violence-free living, and mental and emotional well-being.35 The most prevalent strategic direction points to the empowered people change. Informing and actively engaging an individual in preventive strategies can minimize the effect of secondary conditions that will likely affect physical and/or mental health. Active living, injury and violence-free living, and mental and emotional well-being are addressed through awareness of the likelihood of secondary conditions that may limit participation, mitigate disparities to physical and mental health, and offer peer resources to combat perceptions of social stigma, isolation, and awkwardness in social situations.
Providing the program via the secure TH platform accessed the populations in their natural environments and speaks secondarily to the directive of Healthy and Safe Communities. Participant access to information and peer interaction increases the scope of resources available and enlarges the reach of the specialized practitioners. The program's focus and the related NPS priorities interfaced directly with the WHO levels of intervention of disease prevention and health promotion by creating awareness of the potential for health disparity and accessing specialized care.
Unlimbited Wellness brought value to the participants, the program manager, and the community partner. Future programming will include several changes. The program will likely run for 6 weeks and could be offered 2 to 3 times during the year, and not during holiday or vacation times. In addition, the groups will be expanded to include additional populations, such as parents of children, individuals with acquired loss, and individuals with bilateral loss; however, the groups will meet separately so that distinct problems can be addressed and true peer interactions can be developed.
Future study includes examining the differences among the groups relating to physical and psychosocial secondary conditions and strategies to prevent and/or manage them. It will also be important to reexamine the effectiveness of the groups to determine the effects of Unlimbited Wellness participation, such as whether and to what extent secondary conditions are mitigated and if a refresher or additional programming would be beneficial.
In conclusion, the initial questions of whether the target population and the community partner would perceive value in the Unlimbited Wellness program were answered. The participants verbally expressed being empowered and demonstrated change. TH offered the pathway to develop peer relationships, to enact well-being for oneself, and to contribute to the well-being of others. Program evaluation illustrated dynamic changes in health behavior, perceptions of well-being, and the importance that access to peer interaction and information makes a difference. The community partner found value in the program as a marketing tool and in relation to patient satisfaction. As demonstrated by the surveys at stages of the group process, the stages of behavior change were dynamic, and although the journey was individual, results demonstrate that it was collective as well. This speaks to the potential to create impact on the policy and institutional levels with larger groups. Lastly, Unlimbited Wellness addressed the challenge initially posed: to address and meet the physical and psychosocial needs of America's forgotten individuals with upper limb loss/difference3—diminishing disparity and empowering them to self-advocacy.
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