Chapter 66 Psychosocial recovery and reintegration of patients with burn injuries

Laura Rosenberg, John W. Lawrence, Marta Rosenberg, James A. Fauerbach, Patricia E. Blakeney

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Introduction

The process of psychosocially adapting to a severe burn is complex. Common issues faced by burn survivors include traumatic stress, depression, body image disturbance, social anxiety, grief, pain, itching, sleep disturbance, substance abuse, adapting to physical limitations and coping with permanent burn scarring. In addition, burns often interfere with a person’s ability to work and perform familial responsibilities. Sometimes the survivor’s family is also traumatized, and the family’s material and social resources can be greatly taxed during the course of burn recovery. Despite the sudden life-altering nature of burn injuries, studies of the psychological morbidity for burn survivors suggest that most burn survivors are resilient and adjust well over time. However, approximately 30% of both adult and children burn survivors experience moderate to severe long-term psychosocial difficulties.^1,² The current chapter reviews the challenges of providing quality psychosocial treatment for burn survivors through the course of recovery. The goal is to assist individuals in attaining optimal psychological, emotional and social functioning (Figs. 66.1, 66.2).

Figure 66.1 Quinceañera cutting cake with parents.

(Reprinted from: Herndon DN, ed. Total burn care. London: WB Saunders; 2007).

Figure 66.2 A relaxing day before attending college.

Integrating psychological treatment with physical treatment

Comprehensive burn treatment requires a coordinated interdisciplinary team. Usually the burn team consists of physicians, nurses, care coordinators, physical and occupational therapists, and mental health professionals such as child life specialists, social workers, and psychologists. It may be convenient to think of physical and psychosocial recovery as being two different processes overseen by different sets of professionals, but the two are so intertwined that a team approach to burn recovery is essential. The mental health professionals both consult with other caregivers about the patient’s psychological and social issues and implement psychosocial interventions psychotherapy, and a community reintegration plan. Thus, the mental health professionals on a burn team work both indirectly through consultation and provide patient direct care.

Integrating the patient’s family into the treatment plan from the beginning also facilitates successful outcomes.³ For the psychotherapist on the burn team, the family unit is often the patient. Each individual within the family, including the burn survivor, is an essential element of this unit whose needs must be addressed as they all adapt to the changes in the family.

Assisting with grief following trauma

Traumatic events are frightening experiences that create uncertainty, anxiety, and a sense of threat for victims and their families.^4,⁵ An individual who experiences a burn injury may face multiple changes and losses including separation from one’s support network and home environment, uncertainty regarding the length of hospitalization and process, changes with physical appearance, and in certain circumstances death of loved ones. On the burn unit, these issues often become the focus of psychosocial intervention. Successful grief therapy requires mental health professionals to have an understanding of the traumatic event, knowledge of the individual’s past experiences with loss and coping styles, and cultural and religious beliefs.⁴ Mental health professionals can assist re-establishing a sense of equilibrium following trauma by facilitating the grieving process.

The terms bereavement, grief, and complicated grief may be confusing and merit clarification. Bereavement refers to coping with the death of a loved one; whereas grief is a broader term referring to coping with loss in general.⁶ For example, a burn survivor may grieve the loss of his or her physical abilities or his or her pre-scarred skin. Grief reactions are individually unique and age dependent.^5,⁷ Complicated grief occurs in adults when the grieving process is compromised by trauma. Prigerson and Jacobs (2001) described complicated bereavement as difficulty comprehending and accepting the death of a loved one, persistent and intense longing for the deceased, intrusive thoughts about the deceased, and avoidance of painful memories.⁸ Children can also experience childhood traumatic grief when there is traumatic loss or bereavement.^5,^9,¹⁰ This construct evolved from the literature in child development and trauma and occurs when trauma symptoms interfere with the child’s ability to grieve normally. The child may engage in avoidance behaviors which interfere with the normal grieving process.^5,^9,¹⁰ Traumatic grief can co-occur with psychiatric disorders such as depression and posttraumatic stress disorder.^5,^9,¹¹ The prevalence of burn survivors and family members who experience traumatic grief is unknown. Clinical experience suggests that many burn survivors progress through the grieving process without complications and are resilient when faced with loss.

Emerging research has focused on differentiating normal grief reactions from those of traumatic grief responses. Brown and Goodman (2005) studied 83 children who lost their fathers in the tragedy of the World Trade Center on September 11th and identified normal and traumatic grief as distinct constructs. Significant positive correlations were found between traumatic grief scores and secondary adversities related to the trauma, symptoms of PTSD, general anxiety and depression, and less adaptive coping styles.⁵ The authors reported that children who retained a positive memory and ongoing presence of their loved one were able to grieve normally. A subsequent study by Brown et al. (2008) substantiated these previous findings. The investigators evaluated 132 children and adolescents who experienced the death of a loved one and found significant correlations between childhood traumatic grief scores and PTSD, depression, and anger. In addition, the severity of the traumatic grief response was associated with the view of the death as traumatic.¹⁰

On the burn unit, mental health professionals may need to inform the burn survivor about multiple losses and life changes which may include changes in appearance, loss of body parts, the death of others such as family and friends, loss of a pet, loss of a home, etc. In some circumstances, it requires informing, supporting, and preparing the family for bereavement of the burn trauma victim. This is a delicate process that requires appropriate timing and psychosocial planning. Important factors to consider when planning the disclosure process with patients and families include the patient’s medical stability and ability to participate in conversations; the readiness of the patient and family to hear the news; identification of what they know about the trauma and the factors related to the traumatic event; their wishes regarding disclosure; and knowledge of their cultural, religious and spiritual needs.¹² Bronson and Price (2007) in their article for the Phoenix Society discussed important principles to keep in mind when working with grieving children after burn trauma. They suggest a process which includes supportive and compassionate truth-telling, acceptance, respectfulness of individual differences and feelings, and giving the individual an opportunity to say good-bye.¹³ If death occurs on the burn unit, staff can psychologically support the family by obtaining desired spiritual assistance, assisting them with paperwork for the burial process, allowing them quiet, private time with the deceased, and providing distraught family with memory items if they wish to have them.

Cultural sensitivity

Burn patients come from diverse cultures, and burn care teams must be sensitive as to how cultural issues can affect patients and families in all the phases of the recovery process. ‘Culture’ refers to the socially transmitted expectations, beliefs, traditions, and behavioral patterns typical of a given community at a point in time.¹⁴ Some of the factors influencing culture include country of origin, geographical location within the country, ethnicity, and socioeconomic background. Staff must also be aware of their own biases, values, and assumptions that stem from their cultures.^15,¹⁶

Acculturation is the process in which individuals from one culture embrace patterns, customs, beliefs, values, and the language of the dominant culture.^17,¹⁸ Patients and their families on first arriving at a burn care facility must rapidly adapt to the culture of the hospital environment. Even if the hospital is within their own community, they experience some level of culture shock and acculturation. This process is even more complicated for those who are transported for care to communities far removed from their homes and perhaps in another country. For some patients, this traumatic situation is also the first time they have traveled to another country, and the first time they have had to deal with differences in language, currency, living accommodations, and foods. Individuals’ concepts of time and space, appropriate hospitality, importance of greetings, how non-verbal gestures are interpreted, and ways of expressing gratitude may differ greatly among cultures. Ideas of what caused the burn injury and what is necessary for healing to occur also are determined by cultural values.^19,²⁰

Coping with such a multitude of unfamiliar experiences in a traumatic situation is an extraordinary challenge that can inhibit a patient’s or family’s ability to participate in the recovery process. The burn team must be aware of cultural differences and make culturally appropriate accommodations to a patient’s treatment plan. Cultural traditions can be incorporated into treatment plans to enhance participation toward recovery. For example, if a Latino family believes that the burn incident was a result of ‘evil eye’ they may request a cleansing ritual.¹⁷ It is impossible for providers to know the beliefs and expectations of every culture; however, cultural sensitivity and a willingness to learn are necessary for good patient–provider communication and improves outcomes. Staff can acknowledge their lack of familiarity and pose a question to the patient/family of whether there is anything the team can do to help meet their cultural, spiritual, and religious needs. The question conveys respect for cultural differences and a desire to help through the acculturation process.

Knowledge and sensitivity of cultural practices is also important when focusing on safety and prevention education with patients and their families. Epidemiological research has focused on identification of sociodemographic risk factors and cultural practices that have contributed to burn injuries in developed and developing countries and found differences among these countries.²¹^–²⁴ The highest incidence of severe burns occurs in low and middle income countries²⁵ with children being at highest risk.²¹ In developing countries, factors such as poverty, crowding, food preparation practices, unstable cooking methods, and inconsistent supervision practices place young children at high risk for scald burns.^22,^26,²⁷ Identification of these modifiable risk factors and cultural practices during the course of treatment can facilitate prevention education for the patient/family and hopefully this education will be disseminated throughout their communities.

Approach to assessment and intervention

Our general approach to assessment and care of burn survivors is described throughout the chapter as we suggest interventions to deal with specific difficulties commonly experienced at each phase of recovery. It is basically a behavioral approach based on learning principles (e.g. operant conditioning, cognitive restructuring, and social learning theories) where maladjusted behavior is the target of intervention. Assessment and treatment are integrally related and both occur simultaneously throughout the recovery and rehabilitation process.

The longitudinal pattern of psychological recovery

Psychological healing occurs across time commensurate with physical healing in a relatively predictable and consistent pattern.²⁸ Awareness of this process permits family members and patients to anticipate the development of psychosocial issues, view concerns as normal reactions to the trauma instead of symptoms of psychological impairment, and facilitate coping with these issues. The following sections address psychosocial issues patients deal with in each phase of the recovery process.

Pre-injury adjustment

Shortly after being admitted to the burn unit, a psychosocial assessment is done through a clinical interview with the patient and/or family to gather information regarding variables which may influence the patient’s recovery and treatment plan. These variables include previous stressful events, risk factors, pre-burn physical and psychological health, coping skills, family and social support, and family’s strengths and weaknesses.^29,³⁰ Gathering information about factors which contributed to the circumstances of the burn is emphasized in instances of suspected abuse and neglect. Part of the clinical interview involves initiation of a therapeutic alliance with those who are most likely to be involved in assisting a patient’s recovery.

Because patients will be dependent to some extent on family or other caretakers during recovery, it is essential to identify risk factors in the family system. Historical risk factors which may predispose individuals to burn injury and which may affect post-burn recovery include: physical illness, substance abuse, psychiatric illness, behavioral problems, poverty, inadequate social support, and heightened family disruption.³⁰^–³³

Admission crisis

On admission to the ICU, individuals with burns may experience terror, confusion, shock, disbelief, pain, anxiety, and may believe death is imminent. The hospital environment can be confusing and frightening. While the physiological emergency is treated medically, the psychological crisis must be addressed. The goals at this time are to establish therapeutic rapport with the patient, help decrease anxiety, and assess strengths and needs of the patient. The first two tasks are addressed immediately by orienting the patient, assisting the patient to focus on immediate priorities, and assuring the patient the burn team is composed of knowledgeable experts who will provide excellent care. The patient’s heightened anxiety can be expected to interfere with his/her comprehension, so it is usually necessary to repeat statements of reassurance. To prevent a patient from becoming emotionally overwhelmed, it may be necessary initially to avoid or limit talking about trauma-related content. Patients, especially children, in this early stage of recovery, may exhibit signs of cognitive and emotional regression, and it is important to respond to them on that level. Techniques such as hypnotherapy and relaxation with focused imagery can help decrease patients’ anxiety.

Family members are also traumatized and typically experience difficulty eating and sleeping for the first days. Other symptoms of trauma response often experienced by family members include problems focusing and concentrating, a feeling of loss of control, and a generalized sense of incompetence and helplessness. They may need frequent repetition of information and direction in providing comfort to the patient. The psychotherapeutic tasks to be accomplished with the family are similar to those for the patient, i.e. to establish a therapeutic relationship and diminish anxiety. This can be done by assisting with orientation to the hospital, and providing information about the normal reactions and responses to trauma. Validating that their distress is normal and temporary helps communicate empathy and understanding. Learning about the injury and its treatment helps restore a family’s sense of competence and provides opportunities for them to experience the reality of their roles in helping the patient. The manner in which an individual and family will ultimately adjust to long-term sequelae of a burn is often determined in the early stages of recovery.

Critical care phase

In this phase, intensive medical and surgical care is provided until the majority of open wounds are covered. This period is important psychologically. Patients experience pain, anxiety, and fear of treatment procedures. Organic factors stemming from the injury and its treatment can contribute to psychological symptoms of disorientation, confusion, sleep disturbance, transient psychosis, and delirium. Helpful interventions include repeated orientation to person, place and time; placing comforting objects in the patient’s view or so that he/she can touch them; and making the patient’s environment as soothing as possible. Visits from family and friends can provide familiarity and reassurance to a patient. A schedule that approximates a regular wake/sleep cycle helps a patient begin to feel normal.

Reassurance from staff about the normal aspects of recovery can help decrease a patient’s anxiety. Information about the recovery process, treatment plan, and how staff plan to help improve function can provide a sense of hope. When a patient is alert, the psychotherapist can facilitate grief work to help the patient adjust to the effects of the burn. Patients with altered mental states may be hearing although not responding and discretion should be used regarding what is said near them. Psychological interventions are aimed at diminishing anxiety and increasing comfort instead of correcting the person’s perception of reality.³⁴

Pain and anxiety management are crucial in this stage of recovery. Providing good pain control enhances the burn care staff’s effectiveness in promoting psychological recovery. Routine and scheduled assessments of background and procedural pain,³⁵^–³⁷ and anxiety,^35,³⁷ validates a patient’s concerns but also sets an expectancy of relief. The use of standardized scales provides the message that to experience a range of pain is normal, and allows the patient to participate to some degree in mastering discomfort. When staff assess comfort as routinely as vital signs, patients are less likely to feel anxious about their pain management.

Psychological interventions should be used in conjunction with pharmacological management for both pain and anxiety. The perception of pain can be influenced by anticipatory anxiety over procedures. Cognitive and behavioral interventions which enhance a patient’s mastery or control can help decrease pain and anxiety. Patients often tolerate procedures better when the reasons for each procedure are explained. They may feel more comfortable by participating in their own care; they may gain some mastery over pain when they are allowed to remove their own dressings or participate in wound debridement. The presence of a supportive person can be effective in decreasing pain as well. Instructing a family member on how to comfort their loved one is important during these procedures.

Interventions which redirect a patient’s attention away from painful procedures can facilitate pain and anxiety management. Music therapy is an excellent adjunct to analgesia during burn care with pediatric patients.³⁸^–⁴⁰ Fratianne et al. (2001) found that music therapy interventions significantly decreased the perception of pain in children during wound care. Although anxiety also decreased, results were not significant.⁴¹ On the other hand, Haythornthwaite et al. (2001) reported a sensory focused intervention was more effective in reducing pain in comparison to music distraction with adult burn survivors.⁴²

Other interventions which have been effective in decreasing pain and distress associated with burn treatment include deep breathing, progressive relaxation, visual imagery, biofeedback, hypnosis and virtual reality. Hypnosis induces a relaxed and focused state of awareness which can be extremely helpful in facilitating comfort for adult and pediatric patients. Hypnotic inductions and suggestions must be modified to facilitate a patient’s use of imagery. Some patients will respond well to suggestions of imagining a ‘favorite place’. Children aged 3 and over respond well to storytelling, with suggestions for comfort and mastery interwoven into the story.⁴³ Recent research reported that immersive virtual reality, in which individuals’ attention was immersed in a computer generated world, was effective in reducing pain during wound care.^44,⁴⁵ This intervention may also be helpful during physical therapy.^46,⁴⁷ Mott et al. (2008) found that augmented reality, where a character is viewed on a screen, was also effective in decreasing pain ratings of pediatric burn patients during prolonged wound care.⁴⁸ In addition, child life interventions such as medical play which gives children control by having them role play and manipulate medical equipment, preoperative preparation about procedures or surgeries, and procedural support can facilitate coping in children and decrease anxiety during burn care. The child’s age and development need to be considered when selecting the intervention.⁴⁹

Although over time family members may become more at ease with hospital routines, they will continue to have difficulty coping, feel anxious, and need updates about their patient’s present and future status,⁵⁰ and may develop new concerns as they are placed in new roles and responsibilities. Being away from support systems can be difficult. It is helpful to provide information about what to expect in the immediate future, to facilitate patient interaction, and to provide honest information while allowing family members to protect themselves from overwhelming despair. Family may be reluctant to touch the patient for fear of causing pain and may feel uncomfortable talking aloud to a non-responsive patient. Staff can find ways to allow family members to nurture their loved one and can assist them in becoming comfortable in caring for their patient’s needs. Taking the time to treat the family is a very important part of treating the patient. In addition, this treatment facilitates the family’s resumption of feelings of competence and control, desensitizes them to the sights and odors in the room, and encourages them to join with the burn team in the healing and rehabilitation of the patient. A family must find reason to hope, and staff can assist them by suggesting realistic and optimistic outcomes. Psychotherapeutic work with the family should also identify and plan for management of family issues which may impede a patient’s recovery and rehabilitation, such as financial support, family alliances, historical family events, and beliefs that influence current perceptions and behaviors.

In-hospital recuperation phase

In this phase of recovery, patients become physically stronger yet face new challenges. Patients often reminisce about the past, begin to comprehend the extent of their injury, and experience difficulty adapting to physical limitations and changes in their appearance. They may feel anxious about the future and grieve losses. They can also experience a loss of control and autonomy because they have now become dependent on others for their care, yet be ambivalent about resuming self-care to increase independence. The team can help motivate the patient to participate in treatments and assume responsibility for his/her recovery. Patients who desire optimal recovery need to comply with the medical team’s instructions, many of which require significant physical discomfort. Pain continues to be a concern as patients become increasingly active in rehabilitative exercises, and pain and anxiety management are important to regain optimal physical functioning. As in the previous phase of recovery, music therapy, hypnosis, relaxation techniques, and virtual reality can facilitate pain and anxiety management.

Emotional lability and cognitive and behavioral regression may also occur, especially with younger children. Because children often have difficulty expressing verbally their feelings and frustrations, they may exhibit behavioral outbursts. Parents may be relieved to find out such behaviors are normal, and often require guidance with implementation of treatment plans that target and positively reinforce desirable behaviors (e.g. reinforcement plans with short-term goals such as star charts). Patients may feel frustrated, angry, hopeless, and depressed. These emotional reactions can be difficult for family members to cope with. Hopelessness is more likely to result when patients feel a lack of control and eventually give up trying, which can lead to chronic depression. Although depressive symptoms may decrease during the initial hospitalization,⁵¹ Ullrich et al. (2009) found depression during hospitalization was related to physical functioning of patients up to the first year post-burn.⁵² Psychotherapeutic work with the patient may involve helping the patient experience control, combat feelings of hopelessness and helplessness, facilitate healthy expression of emotions, achieve success, and feel rewarded while progressing through difficult procedures. Desired behaviors (e.g. pressure garment use or walking on treadmill) can be reinforced through verbal praise.

A psychotherapeutic challenge of this phase is to accept and validate the patient’s emotional demonstrations as normal behaviors in the recovery process while also setting limits on the ways in which emotions are expressed. Early in this phase, as the patient begins to ask about the future, the psychotherapist can describe the predictable pattern of emotional vicissitudes indicating they are normal and can be endured and managed. Staff can demonstrate positive regard and acceptance of the patient while also helping the patient to exercise control over destructive behaviors. Responses to questions should be honest but hopeful regarding the expectations of treatment and recovery. Interventions aimed at facilitating grief work, coping with body image concerns, management of anxiety and depression, and social skills training to facilitate social interactions are helpful during this phase of recovery.

Much psychotherapeutic work during this phase is accomplished with patient and family together. Families must learn how to assist a patient in adjusting to the new situation, and the family system must accommodate to the changed situation. Research has shown the high importance of strengthening the family unit, facilitating family closeness, and supporting their attempts to organize their lives to incorporate the additional duties involved in providing continued care for their patient.^3,⁵³ Families must plan and implement adjustments in their relationships and in their home environments that will be necessary for the continuation of the patient’s recovery and rehabilitation after discharge.

Reintegration phase

Preparing for a patient’s discharge to outpatient status and eventually home begins upon admission to the burn unit. A major objective is to facilitate a patient’s reintegration to life at home and his/her community. Community reintegration is the process of becoming involved in the community, in school and work, and in leisure activities.⁵⁴ Returning home signifies social interactions with the larger community of extended family, friends, and strangers. Patients as well as family must prepare for those encounters. Patients often feel ambivalent and anxious, fear social rejection, worry about being accepted and receiving social support.⁵⁵ Returning to a cohesive and supportive family environment^3,⁵⁶ and loyal friends⁵⁷ can make this transition easier.

Psychotherapeutic activities in this phase involve education and preparation of patient and family about difficulties which may be anticipated at discharge. Coping skills that can help are discussed and practiced. Patients and families often deny that they will have problems; however, psychotherapists can help prepare such patients by offering suggestions to address problems that other people have experienced. Issues such as recurrence of posttraumatic stress symptoms, sleep disturbance, irritability, or fear of resuming sexual activities should be discussed prior to discharge.

Social skills programs are available to facilitate positive reintegration to society, improve social comfort, and increase confidence in social interactions. The program Be Your Best by Barbara Kammerer Quayle and The Phoenix Society for Burn Survivors Inc. (2006) was developed to help burn survivors with community reintegration.⁵⁸ Another program Changing Faces by James Partridge, an organization dedicated to assisting persons with facial disfigurement, recommends a brief social skills training program called ‘3–2–1-GO!’⁵⁹ Both programs provide strategies to prepare patients to answer questions related to the burn, and for dealing with staring and stigmatizing behaviors. The patient may benefit from rehearsal using these skills on brief outings outside the hospital. If difficulties are encountered, the patient can consult with the burn team for direction and support to develop an alternate plan. Groups of inpatients, outpatients, and their families can be extremely helpful in the process of anticipating difficulties at discharge and rehearsing solutions while also providing emotional support.

The burn team may prepare the community to which a patient will return (e.g. extended family, neighbors, church groups, social clubs, a patient’s workplace, and for pediatric patients, the school). Instructing those unfamiliar with burns in what to say or do to ease a survivor’s re-entry may assist with reintegration.⁶⁰^–⁶² Variables that may affect burn survivors’ ability to return to work once they are discharged from the hospital include size and severity of burn,^63,⁶⁴ duration of hospitalization,^64,⁶⁵ location of burn,^63,⁶⁴ physical impairment,⁶⁴^–⁶⁷ pain,^66,⁶⁷ prior employment history,^63,^64,⁶⁷ lack of vocational training,⁶⁸ work environment impediments,⁶⁵ and psychosocial difficulties.⁶⁴^–⁶⁸ Variables found to assist with return to work were psychosocial support, positive thinking and vocational training.^67,⁶⁸ A recent literature review reported 66% of burn survivors returned to work within the first 2 years post-burn.⁶⁴ In a study of young adults who sustained burns during childhood, Meyer et al. found that 65% of the sample were employed either full-time or part-time.⁶⁹ Individuals who do work report improved quality of life.^70,⁷¹