Briefly discuss a few facts that you learned about Garry Landreth What is CCPT? What are four beliefs/practices of CCPT? What was your impression of th

PART IV The Use of Medical Play With Terminal Illness in Children

Handbook of Medical Play Therapy and Child Life : Interventions in Clinical and Medical Settings, edited by Lawrence C. Rubin, Taylor & Francis Group, 2017. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/apus/detail.action?docID=5185372. Created from apus on 2025-04-30 02:21:25.

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Handbook of Medical Play Therapy and Child Life : Interventions in Clinical and Medical Settings, edited by Lawrence C. Rubin, Taylor & Francis Group, 2017. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/apus/detail.action?docID=5185372. Created from apus on 2025-04-30 02:21:25.

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CHAPTER 11 Child-Centered Play Therapy With Children Who Are Dying Kristie Opiola and Dee C. Ray

We are multifarious creatures, forever becoming more of who we might be. —Haugh (2012)

Even in the face of death, children work toward safety, health, creativity, and relation- ship. Children who confront life-limiting circumstances may suffer from physical and psychological pain, yet they maintain the biological motivation to enhance their under- standing and ways of being. We, as therapists, can trust that children who are dying strive to move toward greater functioning even under such challenging conditions. Like the bloom of the fl owers in the desert, a hospitalized child encountering death and dying struggles to break through austere realities to experience the healthiest version of life and peace in death. The therapist’s responsibility is to provide a relationship that fosters and supports the child’s struggle, allowing the child to access the biologi- cal force to enhance self in the midst of what may be considered the harshest of life’s conditions.

Child-centered play therapy (CCPT) is recognized in the medical community as an intervention that meets a child’s developmental needs while facilitating the child’s natural progression toward self-acceptance and enhancement. Children naturally communicate through play, therefore “play therapy is a developmentally and cultur- ally responsive intervention particularly suited to treat young children’s social, emo- tional, and behavioral problems” (Bratton, 2013, p. 30). Specifi cally, CCPT identifi es the safe and trusting relationship between child and therapist as vital to the healing process. CCPT is a therapeutic approach that relies on the interpersonal relationship between a child and trained play therapist that utilizes the child’s natural medium of communication—play—to facilitate the development of a safe environment for the child to fully express and explore his or her feelings, thoughts, experiences, and behav- iors (Landreth, 2012). In this chapter, we present CCPT as a responsive approach for terminally ill and dying children. In the medical setting, where children are likely to lose a sense of autonomy and control over their actions and bodies, CCPT offers a

Handbook of Medical Play Therapy and Child Life : Interventions in Clinical and Medical Settings, edited by Lawrence C. Rubin, Taylor & Francis Group, 2017. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/apus/detail.action?docID=5185372. Created from apus on 2025-04-30 02:21:25.

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KRISTIE OPIOLA AND DEE C. RAY196

child the experience to feel fully capable to direct his or her process of grief, loss, and pain. Children who encounter imminent death have little control over their biological processes, but they maintain the ability to direct how to cope with their losses in self- enhancing ways.

REALITIES OF CHILDREN WHO ARE DYING

The death of a child is an uncommon, diffi cult, and painful event (Doka, 1995). Approximately 400,000 children die each year in the United States (Heron, 2016), with over 20% of deaths due to complications or progression of complex chronic conditions (Niswander, Cromwell, Chirico, Gupton, & Korones, 2014). The leading causes of disease-related deaths for children under the age of 15 are chromosomal and congenital abnormalities, malignant neoplasms, heart disease, respiratory dis- tress, infl uenza, cerebrovascular disease, and neurodegenerative diseases. The death of a child can be sudden, such as in accidental or homicidal deaths, or can occur from a chronic illness, such as cancer. Although on the decline, cancer is the leading cause of death by disease in the United States. Dying children who enter the terminal phase of a chronic or life-threatening illness no longer receive aggressive treatment options and the focus turns from curative to palliative or hospice care (Pearson, 2005). At this point in care, the emphasis is on optimizing quality of life and managing pain and disease symptomology (Friebert & Williams, 2015). For other children, diagnoses may be terminal, such as spinal muscular atrophy (SMA), and the child’s care focuses on quality of life instead of curative treatment (Hynson, 2012). Palliative care services are a complementary service and address the holistic needs of dying children, their family members, and the community through a multidisciplinary medical team. The foci of palliative care providers are the physical, emotional, intellectual, and spiritual needs of dying children and their families (Pearson, 2005). Friebert and Williams (2015) noted that the National Hospice and Palliative Care Organization (NHPCO) reported most children die in hospitals, but there is an increased trend of planned at-home deaths for children. Feudtner and colleagues (2011) affi rmed NHPCO’s report by noting that an increasing number of children with complex chronic conditions planned to die in a home setting instead of a hospital setting over the past 15 years.

Impact on Child

Early life experiences can impact the child’s ability to cope with and overcome chal- lenging situations. Children who experience medical challenges early in life can have behavioral, emotional, cognitive, and social problems. Children at end of life have many concerns and need help to process through their fears and curiosity (Pearson, 2009). Children with a terminal or life-ending illness often suffer from associated and easily understandable emotional disorders, such as anxiety and depression (Aldridge & Sourkes, 2012). According to Weaver and her colleagues (2016), children’s anxiet- ies are heightened when children’s fears about treatment and illness are not addressed. Anxiety can intensify as the terminally ill child slowly worsens and lives with the

Handbook of Medical Play Therapy and Child Life : Interventions in Clinical and Medical Settings, edited by Lawrence C. Rubin, Taylor & Francis Group, 2017. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/apus/detail.action?docID=5185372. Created from apus on 2025-04-30 02:21:25.

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197CHILD-CENTERED PLAY THERAPY

uncertainty of life and death (Aldridge & Sourkes, 2012). Children also experience heightened anxiety due to their concrete and literal cognitive abilities. When caregivers do not openly communicate treatment related information to children, they “are left to wonder, interpret and imagine what is happening to them” (Orloff & Jones, 2011, p. 212), potentially causing greater fears and misunderstandings. Therefore, children need open communication about diagnosis, treatment, and prognosis. Children benefi t from small amounts of information explained on a developmentally appropriate level. Children who have battled chronic illness for a period of time often comprehend more about illness and health than their same-aged peers. Terminally ill children are often perceptive and instinctively read nonverbal cues from their parents and health care providers. They are able to notice changes in the parent’s affect and behaviors that indicate changes in their care and often understand changes in their health care before a parent tells them.

Developmental Understanding

A child’s response to death is impacted by overall developmental cognitive under- standing based on the child’s age and cognitive functioning (Pearson, 2009). Cogni- tive understanding of death progresses across age ranges. Researchers confi rm that by the age of 4, children have a considerable understanding of some concepts related to death, such as fi nality of life and non-functionality of being dead, yet other concepts such as causality and universality of death are grasped later, around the ages of 7 to 10 (Bonoti, Leondari, & Mastora, 2013; Rosengren, Gutierrez, & Schein, 2014). Children’s previous experiences, family communication style, and culture can also con- tribute to and infl uence a child’s understanding of death and dying. Children who have previous experience with death understand death at earlier ages and with a greater sense of maturity, specifi cally the concept of causality (Bonoti et al., 2013). Because causality is a later-embraced concept for children, their egocentricity may contribute to them believing that their actions led to the progression of their illness or impending death. At early ages, children are concerned and develop understanding regarding the biology of death, aligning with their more concrete cognitive abilities. At later ages (over 7), children embrace more spiritual and religious conceptualizations of death and grow in their beliefs regarding life continuity beyond death (Rosengren et al., 2014) indicating strong cultural and religious infl uences on understanding of death for mid- dle childhood. Children’s understanding of death is infl uenced by parents’ willingness and openness to discuss death. Parents often operate under the myth that because children cannot developmentally comprehend death as a concept, the subject is best avoided. However, children’s curiosity regarding death and their cognitive abilities to understand aspects of death indicate that open discussion is useful and at times nec- essary in order to avoid sending the message that death is not an embraceable topic. As school-age children mature, they fi nd it challenging to speak about death directly, perhaps due to family and cultural messages that death is a scary and avoidable topic. Children may subtly ask questions or externalize their discussions about death to avoid direct discussion. Providing both verbal and non-verbal methods of approaching the subject of death is critical for parents, caregivers, and therapists.

Handbook of Medical Play Therapy and Child Life : Interventions in Clinical and Medical Settings, edited by Lawrence C. Rubin, Taylor & Francis Group, 2017. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/apus/detail.action?docID=5185372. Created from apus on 2025-04-30 02:21:25.

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KRISTIE OPIOLA AND DEE C. RAY198

Loneliness and Isolation

Two common emotions expressed by terminally ill children are loneliness and isolation (Aldridge & Sourkes, 2012). These children spend a large amount of time away from home and their peers. As the child’s disease progresses, the child often stops attend- ing school due to frequent hospitalization and specialty medical visits or due to pain management issues (Orloff & Jones, 2011). They are less involved in social activities and events and have fewer interactions with their same-aged peers. They spend sub- stantial time with adults instead of same-aged peers. Due to long hospital stays and potentially needing to travel for services, terminally ill children often spend less time with the siblings as well, increasing their loneliness. Many terminally ill children seek control over their environments (Aasgaard, 2006) to keep loved ones near and avoid separation or seek protection from parents and caregivers (Hynson, 2012). Control is often manifested through excessive demands and commanding others to bring about a sense of safety in the environment.

Loss

Terminally ill children experience a multitude of losses in relation to their illness (Aldridge & Sourkes, 2012), particularly that of normalcy. Illness is unpredictable and the child’s predictable and safe world changes as his or her disease progresses. The child also experiences a loss of one’s ability as the disease progresses. For instance, a school-aged child may lose the ability to control his or her bowels and along with it, the trust and confi dence in his or her body to function normally. As the child physi- cally deteriorates, the child’s autonomy is also lost. The child becomes more dependent on others for daily care. Strong emotions often accompany loss. Children may feel sadness, frustration, resignation, or anger toward the changes. Anticipatory grief is a common reaction to loss and entails the process of grieving in advance when a person knows loss is inevitable (Wolfelt, 1996). According to Wolfelt, grief is a natural and necessary process of coping. Grief and loss are two sides of the same coin and often accompany one another. Children express their grief and reaction to loss in multiple ways, with young children typically processing through their grief through the use of play (Pearson, 2009).

Preparing for Death

In preparing for death, Sourkes (2006) highlighted children’s preoccupation with time. They appear eager to complete tasks to accomplish important projects. For instance, one 9-year-old child created a list of her favorite items and identifi ed to whom she planned to give the items. A 12-year-old female made and decorated picture frames with her signature drawings for each of her family members as a legacy project. A 10-year-old child began to ask his mother to read to him. The child’s request created alone time for him and his mother. The child appeared to create meaningful interac- tions with his mother. Each of these activities was an important step for the child so they felt prepared to die. As a child nears death, the children may turn inward and pull

Handbook of Medical Play Therapy and Child Life : Interventions in Clinical and Medical Settings, edited by Lawrence C. Rubin, Taylor & Francis Group, 2017. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/apus/detail.action?docID=5185372. Created from apus on 2025-04-30 02:21:25.

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199CHILD-CENTERED PLAY THERAPY

away from their external world (Aldridge & Sourkes, 2012). They may talk less and retreat from interacting with others. During this time, children still enjoy the presence of a safe person.

Communication

Children and parents may hide their feelings to protect each other. Aldridge and Sourkes (2012) highlight the importance of emotional support. Children seek support from a variety of people. They may seek emotional support from a parent, caregiver, medical personnel, or psychosocial team member. Children tend to test the acceptance and emotional readiness of providers as they seek support. When children identify a person as safe, they may share their concerns, fears, and questions. Children are curi- ous and may ask many questions (Pearson, 2005). It is not uncommon for the child to repeat the question several times or ask several people the same questions as they seek understanding and to increase their trust that others are telling them the truth and not protecting them. A child’s ability to cope with diffi cult emotions is improved when they have a safe person with whom they can share their concerns (Sourkes, 2006). Early and prompt referrals to mental health professionals can alleviate long-term emotional suffering for children (Weaver et al., 2016).

Impact on Families

Families whose children have a life-threatening diagnosis experience a multitude of transitions. Each family member experiences these transitions of illness-related identi- ties in unique ways (Hynson, 2012), and this process typically begins immediately upon time of diagnosis. The child who is sick is diagnosed, then transitions from health to illness. The child also makes a transition from child to patient, while the parent transi- tions from ‘typical’ parent to a parent of a sick child. Over time, additional transitions occur. Parents take on a greater role in providing medical care at home and transition from parent to temporary nurse. Families may transition from spending most time at home to frequent visits to the hospital or doctor’s offi ces. For children with chronic and potentially life-threatening illnesses like cancer, they may experience a transition from diagnosis to cure to incurable prognosis. No matter the transition, the families experience an array of psychosocial needs.

The effects of chronic and terminal illnesses on a family can be vast and devastat- ing. The loss of a child is uncommon and parents frequently experience long periods of emotional distress and chaos (Pearson, 2005). According to Doka (1995), parents often experience shock, disbelief, helplessness, panic, fear, anger, emptiness, with- drawal, and longing. Parents’ emotions come in phases of predictable or unpredict- able (Hynson, Aroni, Bauld & Sawyer, 2006). Parents reported predictable emotions are easier to handle and they experience less anxiety when they know how they will feel. Unpredictable emotions are diffi cult for parents to manage and cause higher anxiety for parents. Foreman, Willis, and Goodenough (2005) discussed parents’ expressions of sadness and isolation, as they did not feel that they could share their emotions with their extended family and friends because they do not feel understood

Handbook of Medical Play Therapy and Child Life : Interventions in Clinical and Medical Settings, edited by Lawrence C. Rubin, Taylor & Francis Group, 2017. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/apus/detail.action?docID=5185372. Created from apus on 2025-04-30 02:21:25.

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KRISTIE OPIOLA AND DEE C. RAY200

or their extended support systems are not empathic to their needs or diffi culties. For instance, parents of children with cancer are inundated with many stressors that place them at risk for emotional diffi culties (Streisand, Kazak, & Tercyak, 2003). Initially, parents receive signifi cant support from friends and family. Unfortunately, as treat- ment persists, support often decreases and families feel like they are fi ghting the battle alone (McGrath, 2001). According to Hynson and colleagues (2006) and Weaver and colleagues (2016), parents desire social support and wish more opportunities existed for support groups with other parents experiencing similar losses. Providing parents with resources and connecting them with trained parent partners may alleviate their feelings of isolation.

Some of the key losses for parents of terminally ill children are the loss of identity, security, and way of life. The parent’s role of protector and nurturer is challenged by a child’s illness (Hynson et al., 2006). Their long-term dreams, hopes, and desires for their dying children are forever changed and often lost. Parents struggle with anxiety and the unpredictable nature of death while trying to comfort and support their child (Best, Streisand, Catania, & Kazak, 2001; Manne et al., 1996). Their daily routines are altered, and they experience increased emotional and physical demands.

Parents who care for dying children experience an increased demand on their time, efforts, fi nances, and coping skills (Robinson et al., 2006). Parents of terminally ill children are forced into many different roles (Orloff & Jones, 2011). Frequent in-home medical visits, administration of medications, monitoring appropriate and healthy diets and fl uid levels, and management of the stressors and demands of daily family life add to a parent’s stress level. Parents fear the strain of multiple roles and demands placed on them due to their child’s terminal illness prevents them from appropriately attending to other responsibilities and causes them to feel as if they are failures (Weaver et al., 2016). As their terminally ill child deteriorates, parents’ focus streamlines to the needs of the ill child and they may struggle to meet the needs of other children (Orl- off & Jones, 2011). Marital relationships may become strained as the parent is more focused on their parenting role than nurturing their spousal role. Commonly, parents feel guilty as they are unable to respond to everyone’s needs.

Siblings often become forgotten within the family (Orloff & Jones, 2011). Accord- ing to Houtzager and colleagues (2004), siblings often experience feelings of isolation, anxiety, uncertainty, jealousy, guilt, anger, and loneliness. The family structure and routine can be permanently altered when a parent’s focus is on the dying child. Siblings may be forced to give up extracurricular activities because family times are allocated to taking care of the dying sibling (Pearson, 2005). Within the family structure, sib- lings are not typically involved in the treatment process—they often stand by and wit- ness their dying sibling’s suffering (Orloff & Jones, 2011). Changes in mood, such as withdrawal, attention-seeking behavior, and mood swings can indicate negative coping strategies, which are common in siblings (Wolfelt, 1996). Often, siblings feel unim- portant as parents may or may not be physically present at activities (Orloff & Jones, 2011). Siblings may feel confused by their parent’s emotional distance and misinterpret the reason for the change in behavior. In addition, parents may employ extended fam- ily and close friends to care for siblings, increasing unpredictability in who will pick the child up from school or where the child may sleep that night. Siblings, in particular

Handbook of Medical Play Therapy and Child Life : Interventions in Clinical and Medical Settings, edited by Lawrence C. Rubin, Taylor & Francis Group, 2017. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/apus/detail.action?docID=5185372. Created from apus on 2025-04-30 02:21:25.

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201CHILD-CENTERED PLAY THERAPY

girls and older siblings, take on more responsibility to help parents, and therefore suf- fer more from restrictions on their daily lives and overall development.

Because parents and siblings are dealing with their own grief and unreasonable stress, they may often be limited in their presence and full acceptance of the emotional needs of a child who is dying. The child who is ill may need someone to sit quietly or someone who will simply play with him or her without discussion. The child who is dying may need to openly play out or discuss the details of death, or the realness of pain and struggle. When family members are focused on helping the child feel better and maintain hope regarding a cure, the child may feel misunderstood and discon- nected, thereby increasing a sense of isolation and belief that something is unaccept- able about how he feels or thinks. The therapist is in the position of being able to provide a safe environment that allows full expression for both a terminally ill child and family members.

MENTAL HEALTH PROVIDERS

Children who are dying receive services from medical and psychosocial professionals. Each professional has a unique role in supporting the dying child and his or her family. Psychosocial team members include social workers, child life specialists, psychiatrists, psychologists, and counselors. A collaborative, team approach to care services is the best approach (Weaver et al., 2016). Many of the providers function from a medical model and attempt to cure or resolve the child’s grief. In the medical model, the responsibility to create change or cure the patient is placed on the professional. The most common approach to mental health services in the health care setting is cognitive therapies (Orloff & Jones, 2011). Sourkes (2006) identifi ed that many dying children begin therapy ser- vices because of the stress related to their illness. The professional may utilize prescriptive cognitive activities to help the child grieve and cope with pending losses. Psychosocial care is not formulaic and requires fl exibility (Aldridge & Sourkes, 2012). Wolfelt (1996) expressed concern for formulaic and prescriptive approaches, as he believes grieving chil- dren need a safe space to mourn with a companion. He believes that prescriptive models underestimate a child’s ability to grow and heal. In addition, prescriptive and cognitive activities have a specifi c focus and limit the professional’s opportunity to learn the child’s experience and fully hear and understand the child’s perspective.

Aldridge and Sourkes (2012) encourage mental health professionals to follow the child’s lead in the therapeutic relationship. Mental health services should provide chil- dren with a space where they can process their feelings, fears, and uncertainty (Orloff & Jones, 2011). Bluebond-Langner (1978) encouraged mental health professionals to provide a safe relationship where children can openly talk or play about their illness and prognosis. The professional maintains the child’s need for privacy and desire to protect their parents from diffi cult conversations. Counseling offers the child a safe space to gain awareness of one’s feelings and make sense of the intangible parts of grief and loss (Orloff & Jones, 2011). Glazer and Landreth (1993) encouraged counselors to provide a warm and accepting environment where children can resolve their fear, pain, and guilt about death.

Handbook of Medical Play Therapy and Child Life : Interventions in Clinical and Medical Settings, edited by Lawrence C. Rubin, Taylor & Francis Group, 2017. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/apus/detail.action?docID=5185372. Created from apus on 2025-04-30 02:21:25.

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CHILD-CENTERED PLAY THERAPY

Child-centered play therapy (CCPT) is a developmentally responsive therapeutic approach to help children with an array of emotional, behavioral, and social concerns (Axline, 1969; Ray & Landreth, 2015), and one of the most widely utilized therapeu- tic approaches for play therapists when working with children (Lambert et al., 2007). CCPT therapists believe in the power of the child-therapist relationship as a catalyst for therapeutic change for terminall

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