- Email: [email protected]
Aftercare, Survivorship, and Peer Support
A f t e rc a re , S u r v i v o r s h i p , and Peer Support Karen Badger, PhD, MSWa,*, Amy Acton, RN, BSNb, Pam Peterson, RN, BSNb KEYWORDS Burn survivor Burns Peer support Community reintegration Psychosocial Aftercare
KEY POINTS Burn recovery includes addressing emotional, psychological, and social needs the survivor and family may be experiencing. Supporting optimal healing includes developing an aftercare plan that provides support and access to resources to achieve social and community reintegration of the burn survivor. Developing social skills, addressing body image, and accessing peer support are priority needs for burn survivors’ successful community and social reintegration. Peer support for burn survivors and their families offers valuable support from the perspective of shared experience that is associated with instilling hope, belongingness, and empowerment. Health care professionals can assist burn survivors and families with reintegration within their roles by identifying needs; being aware of resources; and educating, supporting and connecting survivors to peer support across the care continuum.
The American Burn Association (ABA) reported an annual rate of 486,000 burn injuries in the United States that resulted in 40,000 hospitalizations and a recorded 96.8% survival rate for those admitted to a burn center.1 The burn injury survival rate has increased the need for a greater understanding and support of the life-long impact of physical and psychological implications of burn injury. More survivors and their families are engaged in postburn healing as they work to rebuild their lives and restore their well-being—a journey that requires greater attention to psychosocial ramifications of the burn. The healing process often extends years beyond the acute hospitalization. As part of recovery, burn survivors often face challenges such as additional medical care and surgeries, extensive rehabilitation, changes in function or appearance,
loss (of jobs, relationships, ability, activities), as well as psychological, emotional, and social complications from the injury.2,3 To support the optimal outcome of successful community and social reintegration of the burn survivor, support required to address psychosocial issues needs to be initiated at the start of burn recovery and continue after discharge. Doing so requires a comprehensive aftercare plan that offers ongoing support and connects survivors with accessible resources. This article briefly reviews psychosocial needs of burn survivors, aftercare planning, and the role of peer support in the burn recovery process.
SURVIVORSHIP AND RECOVERY Research shows that survivors of severe burns are at risk for experiencing psychological distress, including symptoms of post-traumatic stress disorder (PTSD), depression, social isolation and discomfort, and decreased quality of life.2,4 Burn
The authors have nothing to disclose. a College of Social Work, University of Kentucky, 661 Patterson Office Tower, Lexington, KY 40506, USA; b Phoenix Society for Burn Survivors, 1835 RW Berends Drive Southwest, Grand Rapids, MI 49519-4955, USA * Corresponding author. E-mail address: [email protected] Clin Plastic Surg - (2017) -–http://dx.doi.org/10.1016/j.cps.2017.05.020 0094-1298/17/Ó 2017 Elsevier Inc. All rights reserved.
plasticsurgery.theclinics.com
AFTERCARE, SURVIVORSHIP, AND PEER SUPPORT
2
Badger et al survivors exposed to life-threatening situations may encounter psychological challenges, no matter the size of the burn. Early identification of need and intervention is important, as psychological difficulties in the initial phase of burn injury have been found to impact psychological health outcomes and quality of life.2,5 Conversely, burn survivors may also undergo post-traumatic growth—even with the presence of symptoms of psychological distress—through contributors such as active coping and support.6 Post-traumatic growth (PTG) refers to positive changes that one may experience following a trauma and the subsequent coming to terms with the event.6 Resilience and positive growth are evident in burn survivors’ stories7 and their activities such as burn prevention, advocacy, and support of other survivors. Given the complexities of recovery and the potential implications of a burn injury, how can burn survivors’ psychosocial healing and recovery be optimally supported to empower them to get back to living and successfully reintegrate into the community? The voice and experience of burn survivors provide guidance. The Phoenix Society for Burn Survivors,8 a national organization that provides peer support, programming, education, and advocacy for burn survivors and others in the burn community, receives ongoing requests from burn survivors for services to support their adjustment and adaptation to their burn and the challenges they face as they return to their communities. Among these, the most sought after resources are related to Social re-entry Body image and appearance Peer support The focus of these requests corroborate the priorities set by the Aftercare Reintegration Committee (ARC), a joint committee of the American Burn Association and the Phoenix Society for Burn Survivors, which was established to support collaboration between the 2 organizations and to set standards of care and priorities related to the rehabilitation and community/social reintegration of burn survivors after injury.9 Following a consensus conference10 attended by a group of burn survivors, family members, health care professionals, and researchers, the priority focus areas outlined to support psychosocial recovery and community/social reintegration of burn survivors were defined as Social skills development Body image enhancement Provision of peer support
The ARC has focused on education and advocacy efforts in these areas ever since that conference via presentations at the American Burn Association annual meetings and other written and conference venues. The American Burn Association also includes burn survivor and reintegration as a special interest group (SIG) topic11 at each meeting. Among the studies that support social skill development and training as important to integration and adjustment is a large, ongoing study—the Life Impact Burn Recovery Evaluation (LIBRE). This study investigates 8 domains relating to social impact of burn injury, one of which is entitled “relating with strangers.” The 402 burn survivor respondents scored their outcomes in this domain as the lowest of the 8 domains measured.12 This suggests the need for support in managing social interactions and developing social skills and social comfort. Patients need to be prepared before discharge with social skills to help their return to the community—a task that can be supported with assistance from the treatment team, social skills programs, and peer support. Quayle13 developed a social skills program that provides an example of such a program and its impact. Body image has been shown to be connected with psychosocial adjustment.14,15 Body image is also associated with quality of life, sexuality, intimacy, and other relational components. Interventions such as corrective cosmetics or image enhancement can be an additional resource beyond laser and other surgical interventions to assist in addressing this area of need. Health care professionals must be comfortable to ask about the topic, to assist burn survivors in adjusting to and accepting body changes, and/or make referrals to appropriate resources. Lawrence, Fauerbach, and Mason16 provide helpful additional reading about body image and intervention in their article, Understanding and Improving Body Image after Burn Injury (MSKTC) (Fig. 1). Peer support is the third priority of focus of the ARC.10 Peer support has also been the cornerstone of the programs of the Phoenix Society for nearly 40 years and is deeply valued by burn survivors and family members. Peer support is in itself an intervention, and it can also be used to assist with addressing other issues, such as the social skills and body image topics previously reviewed. Because of peer support’s critical role in psychosocial recovery, it will be discussed more in-depth.
ROLE OF PEER SUPPORT IN RECOVERY Recovery from a burn injury can be overwhelming, and it can be difficult for burn survivors to feel
Aftercare, Survivorship, and Peer Support
Fig. 1. Corrective cosmetics and image enhancement session. (Courtesy of Phoenix Society for Burn Survivors.)
hopeful or to envision a good quality of life. Peer support is a valuable psychosocial resource that offers burn survivors and their families an inside perspective of life after a burn injury. Peer supporters in burn care are burn survivors who have been trained and prepared to share their personal stories and recovery experiences with other burn survivors who are in an earlier stage of healing— or a later stage of healing and in need of additional support. Peer support is also available for the family of burn survivors and is provided by their peers, other burn survivor family members. Mutual aid as a source of support dates back to 1737 to 1840 when Native Americans employed it
to address alcoholism.17 In health care, peer support is used in various settings to the benefit of patients including burn centers and traumatic brain injury and cardiac care units.18–20 Peer support may take place face to face, virtually, informally, or through systematic efforts of an organization.21 In burn care, peer support can occur in a variety of ways, a summary of which is illustrated in Table 1. Peer supporters offer emotional, instrumental, and/or informational support,21 model mechanisms of coping, and provide an example of a path of recovery. Peer support can empower burn survivors and offer hope and a sense of belongingness and meaning, as it provides the perspective of someone who has walked the walk.22 For example, adolescent burn camp attendees reported feeling accepted and normal, gaining a better understanding of themselves, and improving their confidence and self-esteem levels as a result of the peer support they experienced.23 Peer support has also been associated with positive outcomes. Another finding of the LIBRE study showed that burn survivors who attended at least 1 peer support group scored significantly higher in measures associated with recreation and leisure, work and employment, relating with strangers, sense of purpose, and informal relationships, than their counterparts who did not attend support groups (Fig. 2).24 In 1977, the Phoenix Society for Burn Survivors offered the first organized peer support for survivors. Consistent with its mission, the Phoenix Society offers a network of support resources to burn
Table 1 Examples of peer support delivery methods Peer Support Delivery Methods
Description
Informal contacts
Incidental or casual interactions between burn survivors or family members, social events (may not involve formally trained peer supporters) Information relayed using print or virtual formats that share testimonials and other information from burn survivor or family peers Camps or other adventure activities, workshops, conferences Social media, Web-based discussions, chat rooms, phone outreach, hotlines, skype Face-to-face individual meetings with a trained one-on-one contacts with a peer supporter, buddy programs involving face-to-face visits Hospital or agency-offered support groups, facilitated by trained peer supporter or professional Phoenix SOAR program (organizational infrastructure, systematic oversight and referral process, screened and trained peer supporters); Phoenix World Burn Congress
Informational materials
Short-term intense programs Virtual/distance interactive activities Planned individual peer support
Facilitated support groups Structured peer support program
3
4
Badger et al RECOVERY AND AFTERCARE
Fig. 2. Burn survivor peer support interaction. (Courtesy of Phoenix Society for Burn Survivors.)
survivors, their families, and others touched by burn injury, including an annual conference (the Phoenix World Burn Congress),25 the Burn Support Magazine,26 Web-based monitored chatrooms, and a structured, hospital-based, peer support program for burn survivors and family members, Phoenix SOAR (Survivors Offering Assistance in Recovery).27 Phoenix SOAR is the most wide-reaching and structured peer support program in the burn community and is established throughout the United States and Canada. Phoenix SOAR peer support is also available through the Phoenix Society for burn survivors not affiliated with those hospitals that offer a Phoenix SOAR program. The impact of peer support is illustrated by the story of David Schury,28 who was burned at work, introduced to peer support as a burn camp volunteer, and later became a peer supporter to help others. As demonstrated in Table 1 and by the services described previously peer support can be offered in a variety of ways. The appropriate timing for introducing burn survivors to peer supporters can also vary, but Phoenix SOAR care coordinators and their families have found that family members (particularly of patients with larger burns) are ready and available for peer support earlier than patients. If peer support is not initially accepted, it is important to offer it multiple times at various healing stages to both patients and families due to variations in readiness. It may be that a burn survivor wishes to accept peer support when offered the service in the outpatient setting after s/he has been home for some time, after initially declining when offered the resource in the acute setting. A point to remember—peer support is not meant to replace professional counseling or therapy. Rather, it is meant to be a supplement to such services and augment the aftercare in which the burn survivor is engaged.
Support of the healing process includes development of an aftercare plan that provides support and access to resources for burn survivors to achieve social and community reintegration. Additionally, to encourage optimal burn recovery, aftercare planning requires a holistic approach and includes psychological, emotional, social, and spiritual components in addition to those in the physical realm, including surgical reconstructive options and a tentative future plan. Developing a patient’s aftercare plan cannot be thought about just at the time of discharge, but rather needs to be an intentional part of care that involves all team members and begins in the acute phase of treatment. This perspective resonates with groups such as the Phoenix Society and the joint committee of the American Burn Association and Phoenix Society for Burn Survivors, the Aftercare Reintegration Committee and its education efforts. This essential planning may be more easily carried out by keeping several considerations in mind.
Establish a Clear Set of Responsibilities and Process Although such planning is a team effort, health care professionals may find that a clearer delineation of responsibilities and an established process in aftercare planning will help ensure that aftercare planning occurs routinely and optimizes professional expertise and input. This clarity would also help team members carry out one of the Core Competencies for Interprofessional Collaborative Practice (2011)29 Roles and Responsibilities, which include the goal that team members be knowledgeable about the roles and responsibilities of colleagues and how they complement each other as part of a team and in the delivery of patient care. In addition to beginning aftercare planning early, a shared perspective that recognizes aftercare planning does not end with discharge is a task to which everyone contributes.
View Aftercare Planning as Dynamic Because a burn survivor’s recovery does not end with discharge from acute hospitalization but continues in all phases of care: acute, rehabilitation, and return to the community, aftercare planning may best be viewed as a dynamic process. This extended aftercare trajectory creates numerous opportunities for health care providers to identify burn survivors’ needs and bolster services and support accordingly. For example, burn survivors who did not feel the need for peer support when leaving the hospital may find the experience of
Aftercare, Survivorship, and Peer Support returning to their home environments more difficult than anticipated, and, in turn, may welcome the offer of peer support when offered during an outpatient clinic appointment. Or, they may have mastered new skills and goals that have increased their receptivity to discussing topics of concern with a peer supporter to prepare for their next steps in recovery. Because burn injury impacts the family system in addition to the patient, including family members in assessment efforts is essential, particularly those members who have assumed care responsibilities. Their stress and fatigue levels may also fluctuate once they return home and are in the community, with increased responsibility for the burn care regime. They may find that they benefit from additional support that they previously thought unnecessary when in the hospital with medical professionals in close proximity. Because circumstances and needs change, hospital and community-based care providers’ evaluation of burn survivor and family needs throughout the recovery process (including outpatient or during/after reconstructive surgeries) help to identify the support they need. Burn survivors who receive care from a plethora of providers in different settings have the advantage of interacting with team members in different ways and at various times, which helps to provide many opportunities for assessment from different vantage points. This review of progress and needs is particularly important at times of key events or during developmental transitions.
Routinely Prepare Burn Survivors for Transition A transition from one level of care to another represents a significant change for the patient (and family) and can be a source of stress. This is particularly true when transitioning from the hospital setting to the community and outpatient care. Burn survivors have reported experiencing a disconnection between their experience in the hospital and move to the community; they have described feeling a loss of support and assistance once they left the security of the hospital. Proactive and intentional planning discussions that involve the patient and family and review what to expect after discharge can help prepare them for these changes. Developing a concrete and clear plan for continued support can also help to smooth this transition.
based facilities. Health care professionals in any role or place in the continuum of care can be vital supports to the burn survivor and family and help patients in their efforts to get back to living. Framing aftercare as a fluid and dynamic process recognizes the variability of identified needs and available supports of survivors and family throughout recovery. These changes may require referrals to additional agencies/resources or a modification of services of those already involved. Providing assistance to the burn survivor and family by connecting them with communitybased resources during a transition or point in recovery that is overwhelming or stressful can contribute to a smooth transition and followthrough with aftercare planning. Communicating with professionals already involved in the burn survivor’s care and those who are newly engaged can also help with continuity of care and coordinate team function—fulfilling additional core competencies of interprofessional collaborative health care—communication and teamwork.29 In order to effectively carry out aftercare planning, health care professionals must have some knowledge about the burn survivor’s and family member’s psychosocial short and long-term needs and their implications for recovery, in addition to the medical and physical aspects. This understanding will help them empathize with the patient’s experience and address the concerns most important to burn survivors. For example, if it is not understood what social difficulties a burn survivor may experience when out in the community and interacting with others (eg, shopping, going to dinner or a movie), a health care professional may not appreciate the value social skills training may have for the burn survivor in preparing for these interactions and managing such challenges. This, in turn, may result in fewer referrals to social skills trainings or body image-focused supports. If the uniqueness and value of peer support is not understood, the possibility of survivors and their families being offered peer support may decrease. Additionally, if health care professionals do not know how to make a referral for the support resource—or know to whom they need to refer the burn survivor or family member to make the connection—burn survivors may not receive needed support. Some awareness of resources or the pathway of referral to resources established within their institutions is important for health care professionals to have.
Facilitate Referrals to Community Resources Aftercare often involves, or requires, a team approach that includes professionals from burn centers, rehabilitation facilities, and community-
SUMMARY Aftercare is crucial in assisting burn survivors in their recovery. Health care professionals need to
5
6
Badger et al make a commitment to obtain the knowledge, skills, and awareness of resources necessary to work together and create and implement effective and holistic aftercare plans. From a psychosocial standpoint, survivors may need resources to support successful social and community re-entry, and families may need support to adjust to new responsibilities and different roles or routines. Peer support throughout the healing process can be of great value in achieving successful adjustment and outcomes for burn survivors and family. From a physical perspective, survivors may also benefit from discussion throughout their recovery about reconstructive interventions and options that have the potential to improve their initial outcomes. Comprehensive aftercare planning, across all phases of recovery and settings, can be transformational for burn survivors and their families.
REFERENCES 1. American Burn Association. Burn incidence and treatment in the United States: 2016. National Burn Repository. 2016. Available at: http://www. ameriburn.org/resources_factsheet.php. Accessed December 13, 2016. 2. Cukor J, Wyka K, Leahy N, et al. The treatment of posttraumatic stress disorder and related psychosocial consequences of burn injury: a pilot study. J Burn Care Res 2015;36:184–92. 3. Tolley JS, Foroushani PS. What do we know about one-to-one peer support for adults with burn injury? A scoping review. J Burn Care Res 2014;35:233–42. 4. Fauerbach J, Mason S. Psychological distress after burn injury. Burn Injury Model Systems in collaboration with the University of Washington Model Systems Knowledge Translation Center. 2011. Available at: http://www.msktc.org/burn/factsheets/ Psychological-Distress-After-Burn-Injury. Accessed June 23, 2016. 5. Renneberg B, Ripper S, Schulze J, et al. Quality of life and predictors of long-term outcome after severe burn injury. J Behav Med 2014;37:967–76. 6. Ballie SE, Sellwood W, Wisely JA. Post-traumatic growth in adults following a burn injury. Burns 2014;40:1089–96. 7. Phoenix Society for Burn Survivors. Personal stories. Available at: https://www.phoenix-society.org/ resources/personal-stories. Accessed December 15, 2016. 8. Phoenix Society for Burn Survivors. Phoenix Society organization information. Available at: https://www. phoenix-society.org/. Accessed December 13, 2016. 9. Phoenix Society for Burn Survivors. Aftercare reintegration committee. 2014. Available at: https://www.phoenix-society.org/our-programs/ collaborators. Accessed June 23, 2017.
10. Acton A, Badger K, Fauerbach J, et al. A survivorfocused consensus conference: establishing a psychosocial rehabilitation research agenda. Conference Proceedings American Burn Association Annual Meeting 2009; Spring/Summer edition. 11. American Burn Association. Special Interest Groups. 2016. Available at: http://ameriburn.org/who-we-are/ committees-and-sigs/. Accessed June 23, 2017. 12. Obionwu C Jr, Schneider JC, Shapiro D, et al. The impact of burn injury on relating with strangers: a life impact burn recovery evaluation (LIBRE) study. Proceedings of American Burn Association 48th Annual Conference May/June 2016; 37(3); [abstract: 190]. 13. Kammerer Quayle B. Program that has helped thousands began with one survivor’s need to get back to living. Burn Support Magazine 2015;2:6–7. Available at: https://search.yahoo.com/yhs/search? p5quayle1program1that1helped1thousands&ei5 UTF-8&hspart5mozilla&hsimp5yhs-001. Accessed December 13, 2016. 14. Connell KM, Coates R, Doherty-Poirier M, et al. A literature review to determine the impact of sexuality and body image changes following burn injuries. Sex Disabil 2013;31:403–12. 15. Thombs BD, Notes LD, Lawrence JW, et al. From survival to socialization: a longitudinal study of body image in survivors of severe burn injury. J Psychosom Res 2008;64(2):205–12. 16. Lawrence J, Fauerbach J, Mason S. Understanding and improving body image. Burn Injury Model Systems in collaboration with the University of Washington Model Systems Knowledge Translation Center. 2011. Available at: https://www.phoenixsociety.org/resources/entry/body-image-msktc. Accessed December 12, 2016. 17. White WL. Addiction recovery mutual aid groups: an enduring international phenomenon. Addiction 2004;99:532–8. 18. Chedekel DS, Tolias CL. Adolescents’ perceptions of participation in a burn patient support group. J Burn Care Rehabil 2001;22(4):301–6. 19. Hibbard MR, Antor J, Baratz H, et al. Peer support in the community: initial findings of a mentoring program for individuals with traumatic brain injury and their families. J Head Trauma Rehabil 2002;6(47): 112–31. 20. Hildingh C, Fridlund B. Patient participation in peer support groups after a cardiac event. Br J Nurs 2001;10(20):1357–63. 21. Solomon P. Peer support: peer provided services underlying processes, benefits, and critical ingredients. Psychiatr Rehabil J 2004;27(4):392–9. 22. Badger K, Royse D. Adult burn survivors’ views of peer support: a qualitative study. Soc Work Health Care 2010;49:299–313. Available at: http://dx.doi. org.ezproxy.uky.edu/10.1080/00981380903493095.
Aftercare, Survivorship, and Peer Support 23. Williams NR, Reeves PM, Cox ER, et al. Creating a social work link to the burn community: a research team goes to burn camp. Soc Work Health Care 2004;38(3):81–103. Available at: http://dx.doi.org. ezproxy.uky.edu/10.1300/J010v38n03_05. 24. Grieve B, Shapiro GD, Wibbenmeyer L, et al. Assessment of the role of peer support groups in psychosocial recovery from burn injury: a life impact burn recovery evaluation (LIBRE) study. Proceedings of American Burn Association 48th Annual Conference May/June 2016; 37(3); [abstract: 65]. 25. Phoenix Society for Burn Survivors. Phoenix World Burn Congress. Available at: https://www.phoenixsociety.org/wbc/. Accessed December 14, 2016. 26. Phoenix Society for Burn Survivors. Burn Support Magazine. Available at: https://www.phoenix-
society.org/our-programs/burn-support-magazine. Accessed December 14, 2016. 27. Phoenix Society for Burn Survivors. Phoenix SOAR (Survivors Offering Assistance in Recovery). Available at: https://www.phoenix-society.org/our-programs/ soar. Accessed December 14, 2016. 28. Juris C. David Schury: discovering the reason why. Burn Support News 2009. Available at: https://www. phoenix-society.org/resources/entry/david-schury. Accessed December 12, 2016. 29. Interprofessional Educational Collaborative. Core competencies of interprofessional healthcare collaborative practice. 2011. Available at: http://www. aacn.nche.edu/education-resources/IPECReport. pdf. Accessed June 23, 2017.
7
KEY POINTS Burn recovery includes addressing emotional, psychological, and social needs the survivor and family may be experiencing. Supporting optimal healing includes developing an aftercare plan that provides support and access to resources to achieve social and community reintegration of the burn survivor. Developing social skills, addressing body image, and accessing peer support are priority needs for burn survivors’ successful community and social reintegration. Peer support for burn survivors and their families offers valuable support from the perspective of shared experience that is associated with instilling hope, belongingness, and empowerment. Health care professionals can assist burn survivors and families with reintegration within their roles by identifying needs; being aware of resources; and educating, supporting and connecting survivors to peer support across the care continuum.
The American Burn Association (ABA) reported an annual rate of 486,000 burn injuries in the United States that resulted in 40,000 hospitalizations and a recorded 96.8% survival rate for those admitted to a burn center.1 The burn injury survival rate has increased the need for a greater understanding and support of the life-long impact of physical and psychological implications of burn injury. More survivors and their families are engaged in postburn healing as they work to rebuild their lives and restore their well-being—a journey that requires greater attention to psychosocial ramifications of the burn. The healing process often extends years beyond the acute hospitalization. As part of recovery, burn survivors often face challenges such as additional medical care and surgeries, extensive rehabilitation, changes in function or appearance,
loss (of jobs, relationships, ability, activities), as well as psychological, emotional, and social complications from the injury.2,3 To support the optimal outcome of successful community and social reintegration of the burn survivor, support required to address psychosocial issues needs to be initiated at the start of burn recovery and continue after discharge. Doing so requires a comprehensive aftercare plan that offers ongoing support and connects survivors with accessible resources. This article briefly reviews psychosocial needs of burn survivors, aftercare planning, and the role of peer support in the burn recovery process.
SURVIVORSHIP AND RECOVERY Research shows that survivors of severe burns are at risk for experiencing psychological distress, including symptoms of post-traumatic stress disorder (PTSD), depression, social isolation and discomfort, and decreased quality of life.2,4 Burn
The authors have nothing to disclose. a College of Social Work, University of Kentucky, 661 Patterson Office Tower, Lexington, KY 40506, USA; b Phoenix Society for Burn Survivors, 1835 RW Berends Drive Southwest, Grand Rapids, MI 49519-4955, USA * Corresponding author. E-mail address: [email protected] Clin Plastic Surg - (2017) -–http://dx.doi.org/10.1016/j.cps.2017.05.020 0094-1298/17/Ó 2017 Elsevier Inc. All rights reserved.
plasticsurgery.theclinics.com
AFTERCARE, SURVIVORSHIP, AND PEER SUPPORT
2
Badger et al survivors exposed to life-threatening situations may encounter psychological challenges, no matter the size of the burn. Early identification of need and intervention is important, as psychological difficulties in the initial phase of burn injury have been found to impact psychological health outcomes and quality of life.2,5 Conversely, burn survivors may also undergo post-traumatic growth—even with the presence of symptoms of psychological distress—through contributors such as active coping and support.6 Post-traumatic growth (PTG) refers to positive changes that one may experience following a trauma and the subsequent coming to terms with the event.6 Resilience and positive growth are evident in burn survivors’ stories7 and their activities such as burn prevention, advocacy, and support of other survivors. Given the complexities of recovery and the potential implications of a burn injury, how can burn survivors’ psychosocial healing and recovery be optimally supported to empower them to get back to living and successfully reintegrate into the community? The voice and experience of burn survivors provide guidance. The Phoenix Society for Burn Survivors,8 a national organization that provides peer support, programming, education, and advocacy for burn survivors and others in the burn community, receives ongoing requests from burn survivors for services to support their adjustment and adaptation to their burn and the challenges they face as they return to their communities. Among these, the most sought after resources are related to Social re-entry Body image and appearance Peer support The focus of these requests corroborate the priorities set by the Aftercare Reintegration Committee (ARC), a joint committee of the American Burn Association and the Phoenix Society for Burn Survivors, which was established to support collaboration between the 2 organizations and to set standards of care and priorities related to the rehabilitation and community/social reintegration of burn survivors after injury.9 Following a consensus conference10 attended by a group of burn survivors, family members, health care professionals, and researchers, the priority focus areas outlined to support psychosocial recovery and community/social reintegration of burn survivors were defined as Social skills development Body image enhancement Provision of peer support
The ARC has focused on education and advocacy efforts in these areas ever since that conference via presentations at the American Burn Association annual meetings and other written and conference venues. The American Burn Association also includes burn survivor and reintegration as a special interest group (SIG) topic11 at each meeting. Among the studies that support social skill development and training as important to integration and adjustment is a large, ongoing study—the Life Impact Burn Recovery Evaluation (LIBRE). This study investigates 8 domains relating to social impact of burn injury, one of which is entitled “relating with strangers.” The 402 burn survivor respondents scored their outcomes in this domain as the lowest of the 8 domains measured.12 This suggests the need for support in managing social interactions and developing social skills and social comfort. Patients need to be prepared before discharge with social skills to help their return to the community—a task that can be supported with assistance from the treatment team, social skills programs, and peer support. Quayle13 developed a social skills program that provides an example of such a program and its impact. Body image has been shown to be connected with psychosocial adjustment.14,15 Body image is also associated with quality of life, sexuality, intimacy, and other relational components. Interventions such as corrective cosmetics or image enhancement can be an additional resource beyond laser and other surgical interventions to assist in addressing this area of need. Health care professionals must be comfortable to ask about the topic, to assist burn survivors in adjusting to and accepting body changes, and/or make referrals to appropriate resources. Lawrence, Fauerbach, and Mason16 provide helpful additional reading about body image and intervention in their article, Understanding and Improving Body Image after Burn Injury (MSKTC) (Fig. 1). Peer support is the third priority of focus of the ARC.10 Peer support has also been the cornerstone of the programs of the Phoenix Society for nearly 40 years and is deeply valued by burn survivors and family members. Peer support is in itself an intervention, and it can also be used to assist with addressing other issues, such as the social skills and body image topics previously reviewed. Because of peer support’s critical role in psychosocial recovery, it will be discussed more in-depth.
ROLE OF PEER SUPPORT IN RECOVERY Recovery from a burn injury can be overwhelming, and it can be difficult for burn survivors to feel
Aftercare, Survivorship, and Peer Support
Fig. 1. Corrective cosmetics and image enhancement session. (Courtesy of Phoenix Society for Burn Survivors.)
hopeful or to envision a good quality of life. Peer support is a valuable psychosocial resource that offers burn survivors and their families an inside perspective of life after a burn injury. Peer supporters in burn care are burn survivors who have been trained and prepared to share their personal stories and recovery experiences with other burn survivors who are in an earlier stage of healing— or a later stage of healing and in need of additional support. Peer support is also available for the family of burn survivors and is provided by their peers, other burn survivor family members. Mutual aid as a source of support dates back to 1737 to 1840 when Native Americans employed it
to address alcoholism.17 In health care, peer support is used in various settings to the benefit of patients including burn centers and traumatic brain injury and cardiac care units.18–20 Peer support may take place face to face, virtually, informally, or through systematic efforts of an organization.21 In burn care, peer support can occur in a variety of ways, a summary of which is illustrated in Table 1. Peer supporters offer emotional, instrumental, and/or informational support,21 model mechanisms of coping, and provide an example of a path of recovery. Peer support can empower burn survivors and offer hope and a sense of belongingness and meaning, as it provides the perspective of someone who has walked the walk.22 For example, adolescent burn camp attendees reported feeling accepted and normal, gaining a better understanding of themselves, and improving their confidence and self-esteem levels as a result of the peer support they experienced.23 Peer support has also been associated with positive outcomes. Another finding of the LIBRE study showed that burn survivors who attended at least 1 peer support group scored significantly higher in measures associated with recreation and leisure, work and employment, relating with strangers, sense of purpose, and informal relationships, than their counterparts who did not attend support groups (Fig. 2).24 In 1977, the Phoenix Society for Burn Survivors offered the first organized peer support for survivors. Consistent with its mission, the Phoenix Society offers a network of support resources to burn
Table 1 Examples of peer support delivery methods Peer Support Delivery Methods
Description
Informal contacts
Incidental or casual interactions between burn survivors or family members, social events (may not involve formally trained peer supporters) Information relayed using print or virtual formats that share testimonials and other information from burn survivor or family peers Camps or other adventure activities, workshops, conferences Social media, Web-based discussions, chat rooms, phone outreach, hotlines, skype Face-to-face individual meetings with a trained one-on-one contacts with a peer supporter, buddy programs involving face-to-face visits Hospital or agency-offered support groups, facilitated by trained peer supporter or professional Phoenix SOAR program (organizational infrastructure, systematic oversight and referral process, screened and trained peer supporters); Phoenix World Burn Congress
Informational materials
Short-term intense programs Virtual/distance interactive activities Planned individual peer support
Facilitated support groups Structured peer support program
3
4
Badger et al RECOVERY AND AFTERCARE
Fig. 2. Burn survivor peer support interaction. (Courtesy of Phoenix Society for Burn Survivors.)
survivors, their families, and others touched by burn injury, including an annual conference (the Phoenix World Burn Congress),25 the Burn Support Magazine,26 Web-based monitored chatrooms, and a structured, hospital-based, peer support program for burn survivors and family members, Phoenix SOAR (Survivors Offering Assistance in Recovery).27 Phoenix SOAR is the most wide-reaching and structured peer support program in the burn community and is established throughout the United States and Canada. Phoenix SOAR peer support is also available through the Phoenix Society for burn survivors not affiliated with those hospitals that offer a Phoenix SOAR program. The impact of peer support is illustrated by the story of David Schury,28 who was burned at work, introduced to peer support as a burn camp volunteer, and later became a peer supporter to help others. As demonstrated in Table 1 and by the services described previously peer support can be offered in a variety of ways. The appropriate timing for introducing burn survivors to peer supporters can also vary, but Phoenix SOAR care coordinators and their families have found that family members (particularly of patients with larger burns) are ready and available for peer support earlier than patients. If peer support is not initially accepted, it is important to offer it multiple times at various healing stages to both patients and families due to variations in readiness. It may be that a burn survivor wishes to accept peer support when offered the service in the outpatient setting after s/he has been home for some time, after initially declining when offered the resource in the acute setting. A point to remember—peer support is not meant to replace professional counseling or therapy. Rather, it is meant to be a supplement to such services and augment the aftercare in which the burn survivor is engaged.
Support of the healing process includes development of an aftercare plan that provides support and access to resources for burn survivors to achieve social and community reintegration. Additionally, to encourage optimal burn recovery, aftercare planning requires a holistic approach and includes psychological, emotional, social, and spiritual components in addition to those in the physical realm, including surgical reconstructive options and a tentative future plan. Developing a patient’s aftercare plan cannot be thought about just at the time of discharge, but rather needs to be an intentional part of care that involves all team members and begins in the acute phase of treatment. This perspective resonates with groups such as the Phoenix Society and the joint committee of the American Burn Association and Phoenix Society for Burn Survivors, the Aftercare Reintegration Committee and its education efforts. This essential planning may be more easily carried out by keeping several considerations in mind.
Establish a Clear Set of Responsibilities and Process Although such planning is a team effort, health care professionals may find that a clearer delineation of responsibilities and an established process in aftercare planning will help ensure that aftercare planning occurs routinely and optimizes professional expertise and input. This clarity would also help team members carry out one of the Core Competencies for Interprofessional Collaborative Practice (2011)29 Roles and Responsibilities, which include the goal that team members be knowledgeable about the roles and responsibilities of colleagues and how they complement each other as part of a team and in the delivery of patient care. In addition to beginning aftercare planning early, a shared perspective that recognizes aftercare planning does not end with discharge is a task to which everyone contributes.
View Aftercare Planning as Dynamic Because a burn survivor’s recovery does not end with discharge from acute hospitalization but continues in all phases of care: acute, rehabilitation, and return to the community, aftercare planning may best be viewed as a dynamic process. This extended aftercare trajectory creates numerous opportunities for health care providers to identify burn survivors’ needs and bolster services and support accordingly. For example, burn survivors who did not feel the need for peer support when leaving the hospital may find the experience of
Aftercare, Survivorship, and Peer Support returning to their home environments more difficult than anticipated, and, in turn, may welcome the offer of peer support when offered during an outpatient clinic appointment. Or, they may have mastered new skills and goals that have increased their receptivity to discussing topics of concern with a peer supporter to prepare for their next steps in recovery. Because burn injury impacts the family system in addition to the patient, including family members in assessment efforts is essential, particularly those members who have assumed care responsibilities. Their stress and fatigue levels may also fluctuate once they return home and are in the community, with increased responsibility for the burn care regime. They may find that they benefit from additional support that they previously thought unnecessary when in the hospital with medical professionals in close proximity. Because circumstances and needs change, hospital and community-based care providers’ evaluation of burn survivor and family needs throughout the recovery process (including outpatient or during/after reconstructive surgeries) help to identify the support they need. Burn survivors who receive care from a plethora of providers in different settings have the advantage of interacting with team members in different ways and at various times, which helps to provide many opportunities for assessment from different vantage points. This review of progress and needs is particularly important at times of key events or during developmental transitions.
Routinely Prepare Burn Survivors for Transition A transition from one level of care to another represents a significant change for the patient (and family) and can be a source of stress. This is particularly true when transitioning from the hospital setting to the community and outpatient care. Burn survivors have reported experiencing a disconnection between their experience in the hospital and move to the community; they have described feeling a loss of support and assistance once they left the security of the hospital. Proactive and intentional planning discussions that involve the patient and family and review what to expect after discharge can help prepare them for these changes. Developing a concrete and clear plan for continued support can also help to smooth this transition.
based facilities. Health care professionals in any role or place in the continuum of care can be vital supports to the burn survivor and family and help patients in their efforts to get back to living. Framing aftercare as a fluid and dynamic process recognizes the variability of identified needs and available supports of survivors and family throughout recovery. These changes may require referrals to additional agencies/resources or a modification of services of those already involved. Providing assistance to the burn survivor and family by connecting them with communitybased resources during a transition or point in recovery that is overwhelming or stressful can contribute to a smooth transition and followthrough with aftercare planning. Communicating with professionals already involved in the burn survivor’s care and those who are newly engaged can also help with continuity of care and coordinate team function—fulfilling additional core competencies of interprofessional collaborative health care—communication and teamwork.29 In order to effectively carry out aftercare planning, health care professionals must have some knowledge about the burn survivor’s and family member’s psychosocial short and long-term needs and their implications for recovery, in addition to the medical and physical aspects. This understanding will help them empathize with the patient’s experience and address the concerns most important to burn survivors. For example, if it is not understood what social difficulties a burn survivor may experience when out in the community and interacting with others (eg, shopping, going to dinner or a movie), a health care professional may not appreciate the value social skills training may have for the burn survivor in preparing for these interactions and managing such challenges. This, in turn, may result in fewer referrals to social skills trainings or body image-focused supports. If the uniqueness and value of peer support is not understood, the possibility of survivors and their families being offered peer support may decrease. Additionally, if health care professionals do not know how to make a referral for the support resource—or know to whom they need to refer the burn survivor or family member to make the connection—burn survivors may not receive needed support. Some awareness of resources or the pathway of referral to resources established within their institutions is important for health care professionals to have.
Facilitate Referrals to Community Resources Aftercare often involves, or requires, a team approach that includes professionals from burn centers, rehabilitation facilities, and community-
SUMMARY Aftercare is crucial in assisting burn survivors in their recovery. Health care professionals need to
5
6
Badger et al make a commitment to obtain the knowledge, skills, and awareness of resources necessary to work together and create and implement effective and holistic aftercare plans. From a psychosocial standpoint, survivors may need resources to support successful social and community re-entry, and families may need support to adjust to new responsibilities and different roles or routines. Peer support throughout the healing process can be of great value in achieving successful adjustment and outcomes for burn survivors and family. From a physical perspective, survivors may also benefit from discussion throughout their recovery about reconstructive interventions and options that have the potential to improve their initial outcomes. Comprehensive aftercare planning, across all phases of recovery and settings, can be transformational for burn survivors and their families.
REFERENCES 1. American Burn Association. Burn incidence and treatment in the United States: 2016. National Burn Repository. 2016. Available at: http://www. ameriburn.org/resources_factsheet.php. Accessed December 13, 2016. 2. Cukor J, Wyka K, Leahy N, et al. The treatment of posttraumatic stress disorder and related psychosocial consequences of burn injury: a pilot study. J Burn Care Res 2015;36:184–92. 3. Tolley JS, Foroushani PS. What do we know about one-to-one peer support for adults with burn injury? A scoping review. J Burn Care Res 2014;35:233–42. 4. Fauerbach J, Mason S. Psychological distress after burn injury. Burn Injury Model Systems in collaboration with the University of Washington Model Systems Knowledge Translation Center. 2011. Available at: http://www.msktc.org/burn/factsheets/ Psychological-Distress-After-Burn-Injury. Accessed June 23, 2016. 5. Renneberg B, Ripper S, Schulze J, et al. Quality of life and predictors of long-term outcome after severe burn injury. J Behav Med 2014;37:967–76. 6. Ballie SE, Sellwood W, Wisely JA. Post-traumatic growth in adults following a burn injury. Burns 2014;40:1089–96. 7. Phoenix Society for Burn Survivors. Personal stories. Available at: https://www.phoenix-society.org/ resources/personal-stories. Accessed December 15, 2016. 8. Phoenix Society for Burn Survivors. Phoenix Society organization information. Available at: https://www. phoenix-society.org/. Accessed December 13, 2016. 9. Phoenix Society for Burn Survivors. Aftercare reintegration committee. 2014. Available at: https://www.phoenix-society.org/our-programs/ collaborators. Accessed June 23, 2017.
10. Acton A, Badger K, Fauerbach J, et al. A survivorfocused consensus conference: establishing a psychosocial rehabilitation research agenda. Conference Proceedings American Burn Association Annual Meeting 2009; Spring/Summer edition. 11. American Burn Association. Special Interest Groups. 2016. Available at: http://ameriburn.org/who-we-are/ committees-and-sigs/. Accessed June 23, 2017. 12. Obionwu C Jr, Schneider JC, Shapiro D, et al. The impact of burn injury on relating with strangers: a life impact burn recovery evaluation (LIBRE) study. Proceedings of American Burn Association 48th Annual Conference May/June 2016; 37(3); [abstract: 190]. 13. Kammerer Quayle B. Program that has helped thousands began with one survivor’s need to get back to living. Burn Support Magazine 2015;2:6–7. Available at: https://search.yahoo.com/yhs/search? p5quayle1program1that1helped1thousands&ei5 UTF-8&hspart5mozilla&hsimp5yhs-001. Accessed December 13, 2016. 14. Connell KM, Coates R, Doherty-Poirier M, et al. A literature review to determine the impact of sexuality and body image changes following burn injuries. Sex Disabil 2013;31:403–12. 15. Thombs BD, Notes LD, Lawrence JW, et al. From survival to socialization: a longitudinal study of body image in survivors of severe burn injury. J Psychosom Res 2008;64(2):205–12. 16. Lawrence J, Fauerbach J, Mason S. Understanding and improving body image. Burn Injury Model Systems in collaboration with the University of Washington Model Systems Knowledge Translation Center. 2011. Available at: https://www.phoenixsociety.org/resources/entry/body-image-msktc. Accessed December 12, 2016. 17. White WL. Addiction recovery mutual aid groups: an enduring international phenomenon. Addiction 2004;99:532–8. 18. Chedekel DS, Tolias CL. Adolescents’ perceptions of participation in a burn patient support group. J Burn Care Rehabil 2001;22(4):301–6. 19. Hibbard MR, Antor J, Baratz H, et al. Peer support in the community: initial findings of a mentoring program for individuals with traumatic brain injury and their families. J Head Trauma Rehabil 2002;6(47): 112–31. 20. Hildingh C, Fridlund B. Patient participation in peer support groups after a cardiac event. Br J Nurs 2001;10(20):1357–63. 21. Solomon P. Peer support: peer provided services underlying processes, benefits, and critical ingredients. Psychiatr Rehabil J 2004;27(4):392–9. 22. Badger K, Royse D. Adult burn survivors’ views of peer support: a qualitative study. Soc Work Health Care 2010;49:299–313. Available at: http://dx.doi. org.ezproxy.uky.edu/10.1080/00981380903493095.
Aftercare, Survivorship, and Peer Support 23. Williams NR, Reeves PM, Cox ER, et al. Creating a social work link to the burn community: a research team goes to burn camp. Soc Work Health Care 2004;38(3):81–103. Available at: http://dx.doi.org. ezproxy.uky.edu/10.1300/J010v38n03_05. 24. Grieve B, Shapiro GD, Wibbenmeyer L, et al. Assessment of the role of peer support groups in psychosocial recovery from burn injury: a life impact burn recovery evaluation (LIBRE) study. Proceedings of American Burn Association 48th Annual Conference May/June 2016; 37(3); [abstract: 65]. 25. Phoenix Society for Burn Survivors. Phoenix World Burn Congress. Available at: https://www.phoenixsociety.org/wbc/. Accessed December 14, 2016. 26. Phoenix Society for Burn Survivors. Burn Support Magazine. Available at: https://www.phoenix-
society.org/our-programs/burn-support-magazine. Accessed December 14, 2016. 27. Phoenix Society for Burn Survivors. Phoenix SOAR (Survivors Offering Assistance in Recovery). Available at: https://www.phoenix-society.org/our-programs/ soar. Accessed December 14, 2016. 28. Juris C. David Schury: discovering the reason why. Burn Support News 2009. Available at: https://www. phoenix-society.org/resources/entry/david-schury. Accessed December 12, 2016. 29. Interprofessional Educational Collaborative. Core competencies of interprofessional healthcare collaborative practice. 2011. Available at: http://www. aacn.nche.edu/education-resources/IPECReport. pdf. Accessed June 23, 2017.
7