Sharing Care: The Integration of Family Approaches with Child Treatment

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For at least a year, they had suspected Peter was abusing drugs. For the first two family sessions, Peter, his older sister Nancy, 18, and their parents attended. In fact, the father often was sarcastic and sometimes hostile toward Peter, disparaging his attitude and problems.

Furthermore, Peter wanted to retaliate against his father by causing problems in the family. In this respect, Peter was succeeding. His substance abuse and falling grades had created a hostile environment at home. Although the family terminated treatment prematurely after eight sessions, some positive treatment outcomes were realized. They included an improved relationship between Peter and his father, improved academic performance, and an apparent cessation of drug use a belief based on negative urine test results.

He attended Alcoholics Anonymous AA , worked every day, and saw his probation officer regularly. In many ways, Delbert was progressing well in his recovery. However, he and his wife, Renee, continued to have daily arguments that upset their children and left both Delbert and Renee thinking that divorce might be their only option.

Sharing Care: The Integration of Family Approaches with Child Treatment

Delbert had even begun to wonder whether his efforts toward abstinence were worthwhile. Delbert and Renee finally sought help from the continuing care program at the substance abuse treatment facility where Delbert was a client. Their counselor, using a behavioral family therapy approach, met with them and began to assess their difficulty. What became obvious was that their prerecovery communication style was still in place, despite the fact that Delbert was no longer drinking.

The counselor, realizing the couple lacked the skills to communicate differently, began to teach them new communication skills. Each partner learned to listen and summarize what their partner had said to make sure the point was understood prior to response. As they were able to do so, their views of each other slowly changed. After 15 sessions of marital therapy, their arguing had decreased, and both saw enough positive aspects of their relationship to merit trying to save it.

The therapy also helps families interact with the larger systems in their lives. For many families, dealing with larger systems is not a problem. Their dealings with the larger systems are routine and positive; when they have occasional difficulties they can navigate within larger systems. Other families, however, have recurrent problems and more frequent dealings with larger systems. For example, families with substance abuse problems interact more regularly with the judicial system, because of arrests e.

This connection can have an adverse effect on the family. It may limit finances, time together, and unity; stress family relationships; and result in loss of child custody. It can also complicate the therapeutic process, especially if the family is ordered to come to treatment. However, even though a family may resist and feel coerced, the judicial system can be the stimulus that gets the family treated and reconnected with social services. The counselor helps initiate contact with other systems, including agencies that can provide services to the client and his or her family members.

The counselor can help the client navigate the maze of systems that he is involved with, including courts, law enforcement, social service agencies, and child welfare. To some extent, the counselor is a community liaison, who can provide information to clients about the resources in the community and advocate in the community for more funding and other support for substance abuse treatment. Family strengths and supports can be enhanced by resources in the criminal justice system.

La Bodega was created in as a demonstration project of the Vera Institute of Justice and recently incorporated as Family Justice, Inc. Participants and their families help design and implement their service plans, increasing the likelihood of compliance with the plan and success in rehabilitation and reconnecting with their communities. La Bodega also serves a prevention function, exposing children, other family members, and neighbors to the ideas and skills needed to live without alcohol and illicit drugs.

Most case managers hold advanced degrees and have special training in family work. The milieu is carefully managed and monitored to model the principles and behavior that families are encouraged to integrate into their daily lives. Constant training and supervision are provided to support the paradigm shift required to consider participants, their families, and government partners in a new light: For example, when participants relapse or otherwise fail to comply with justice mandates, the justice and treatment systems usually narrow their focus.

Using the principles and tools of FPCM, however, La Bodega widens the focus to consider the participant and the relapse in a broader context of family, neighborhood, and community.

Collaboration in Family Therapy

Network therapy harnesses the potential of therapeutic support from people outside of the immediate family, especially when conducting effective substance abuse interventions. By gathering those who genuinely care about the individual with a substance use disorder——especially friends and extended family members——the counselor helps encourage the individual who uses drugs to stop using and remain abstinent. Galanter also points to the importance of AA in network therapy.

Network therapy also attempts to connect people to the larger community. Network therapy is compatible with traditional healing practices, alternative medicine, AA attendance, and participation in community events such as pueblo feast days and arts and crafts fairs. Network therapy is especially useful for reconnecting urban American Indians with the larger community.

The counselor keeps people in the network informed and involved and encourages the client to accept help from the network and to accept the rewards that the network can offer. It became apparent to the social worker at the child welfare agency that her financial and parenting difficulties were related to her alcohol dependence. After multiple failures in outpatient treatment, Debbie was faced with losing custody of her child. In this program, family therapy was initiated, with Debbie asking a female friend from a church she had been involved in to attend these sessions. As Debbie made progress in substance abuse treatment, the frequency and length of the visits increased.

The substance abuse counselor took on the role of advocate to appeal the unfortunate timing of the hearing. The counselor acted as an advocate for the client in a system that was not considering the full impact of its actions on a newly sober mother. Bowen family systems therapists believe that all family dysfunctions, including substance abuse, come from ineffective management of the anxiety in a family system.

More specifically, substance abuse is viewed as one way for both individuals and the family as a group to manage anxiety. The person who abuses alcohol or drugs does so in part to reduce anxiety temporarily, and when the entire family can justifiably focus on the individual who uses drugs as the problem, it can deflect attention from other sources of anxiety. Ideally, family members are able to strike a balance between emotional reactivity and reason and are aware of which is which.

This is called differentiation. Further, family members are autonomous, that is, neither fused with nor detached from others in the family. Bowen family systems therapy is also based on the premise that a change on the part of just one family member will affect the family system.

Such changes can decrease or even eliminate the problem that brought the family into treatment. In Bowenian therapy, it is assumed that the past influences the present. The Bowenian approach to substance abuse often works through one person, and its scope is highly systemic.

Introduction

For instance, Bowen attempts to reduce anxiety throughout the family by encouraging people to become more differentiated, more autonomous, and less enmeshed in the family emotional system. Some intergenerational patterns that may require therapeutic focus are. Although no demonstrated outcomes substantiate Bowenian therapy to address substance abuse, counselors have often used it to treat clients with substance use disorders who have immigrated to this country.

It is believed that this therapeutic approach is a good match for such clients because it emphasizes the intergenerational transmission of anxiety and the effects of trauma that are passed down through generations. For many the circumstances of migration are traumatic. Such losses are not only carried from the past, but continue to occur in the present as family members are subject to the indirect consequences of migration, such as unemployment or underemployment, marginal or overcrowded housing, untreated health problems, and poverty.

In this situation, alcohol and drugs can provide an expedient way to blot out pain and hopelessness. Healing cannot begin until both the counselor and the client understand the significance of the loss of past cultural identification in light of a current substance use disorder. Rather than focusing on an extensive description of the problem, SFBT encourages client and therapist to focus instead on what life will be like when the problem is solved.

The emphasis is on the development of a solution in the future, rather than on understanding the development of the problem in the past or its maintenance in the present. Exceptions to the problem—that is, times when the problem does not happen and a piece of the future solution is present—are elicited and built on. SFBT has been increasingly used to treat substance use disorders since the publication of Working with the Problem Drinker: Quite the contrary, SFBT counselors insist, people who abuse substances can direct their own treatment, provided they participate in the process of developing goals for therapy that have meaning for them and that they believe will make significant change in their lives.

SFBT is consistent with research that stresses the importance of collaborative, nonconfrontational therapeutic relationships in substance abuse treatment Miller et al. In fact, even substance abuse counselors who firmly believe in the disease model also accept and use SFBT as one component of substance abuse treatment Osborn As yet, however, little definitive research has confirmed the effectiveness of SFBT for substance abuse. Gingerich and Eisengart found and evaluated 15 studies on the outcome of SFBT in treating various problems.

Of the 15 studies, only two poorly controlled ones looked at the substance abuse population. He achieved more days abstinent and more days at work per week during treatment as compared to before treatment Polk The other study involved a therapist who used SFBT with 27 clients in treatment for substance use disorders. A larger percentage of the SFBT clients recovered by study definitions after two sessions and after seven sessions than did the comparison clients, but no details were given about the severity of the cases or specific client outcomes Lambert et al. In SFBT, the counselor helps the client develop a detailed, carefully articulated vision of what the world would be like if the presenting problem were solved.

The counselor then helps the client take the necessary steps to realize that vision. In addition, the counselor encourages clients to recall exceptions to problems, that is, times when the problem did not occur, and to examine and increase those exceptions. They include the miracle question, exception questions, scaling questions, relational questions, and problem definition questions.

The miracle question traditionally takes this form:. The miracle question serves several purposes. It helps the client imagine what life would be like if his problems were solved, gives hope of change, and previews the benefits of that change. Its most important feature, however, is its transfer of power to clients.

It permits them to create their own vision of the change they want. It does not require them to accept a vision composed or suggested by an expert Berg What would you notice during breakfast? What would you notice when you got to work? How would that make a difference? Some clients say their miracle would be to win the lottery. Sometimes a continual problem is less severe or even absent. As a clear vision of change emerges, techniques begin to focus on helping the client make change happen. At this point, one especially useful technique is the scaling question.

It might ask, On a scale of 1 to 10, where 1 means one of your goals is met and 10 means all your goals are completely met, where would you rate yourself today? Such questions help clients gauge their own progress toward their goals and see change as a process rather than an event. A good relational question is, What will other people notice about you as you move closer and closer to your goal? For instance, an adolescent client might declare that he is completely confident that he will not relapse.

This technique, used with the families of people with substance use disorders, defines the steps that each person takes to produce an outcome that is not a problem McCollum and Trepper The therapist helps the family define a problem it would like to solve, and then constructs the part each member plays in the sequence of behaviors leading up to that problem. Next, the therapist helps the family examine exceptions to the problem sequence and uses the exceptions to construct a solution sequence. Darcy had been diagnosed with an alcohol use disorder.

In family therapy, she and her husband Steve came to recognize a problem sequence known as a pursuer—distancer pattern. When Steve sensed Darcy distancing from him emotionally, he would begin to worry that she was in danger of going on another drinking binge. His response to this fear was to suggest that Darcy call her sponsor or go to extra AA meetings. Steve would then insist that she call her sponsor, and the tension between them would escalate into an argument. The quarrel often ended when Darcy stormed out of the house to spend the night with her sister, who was not a healthful influence.

After Darcy and Steve defined this sequence, the therapist helped them look for exceptions to it——times when the sequence started, but did not end in a binge. Both Darcy and Steve were able to identify a solution sequence. Darcy remembered a time when Steve was pestering her. Then she called and had lunch with her sponsor before going to an AA meeting where her sponsor was the speaker that day. When she came home, she was able to reassure Steve that she was not tempted to drink at that point and suggested they go to a movie together. Steve recalled an occasion when he was getting anxious about Darcy, but instead of pestering Darcy, he mowed the lawn.

The physical activity dissipated his anxiety, and he was then able to talk to Darcy calmly about his concerns without pressuring her to take any specific action. The therapist helped Darcy and Steve to build on these successful times, identifying ways to more positive sequences of behavior. Together, the levels of family recovery are. For instance, family members may be aware of a drinking problem sooner than the person who is doing the drinking. When a person who drinks excessively comes to treatment, both the client and the family need education about alcohol abuse, and both need to think about seeking help to stop the drinking.

Similarly, once the person who drinks decides to stop drinking and makes plans to do so, the family must learn to stop supporting the drinking.

Familiar ways of interacting must change if the family is to maintain a healthy emotional balance and support abstinence. In short, as both the individual and the family change, both have to adjust to a change in lifestyle that supports sobriety or abstinence, the changes needed to maintain sobriety or abstinence, and a stable family system. Different models of integrated treatment suggest different techniques that can be used at different levels of recovery.

As the family addresses its challenges and the client addresses a substance use disorder, they will progress from attainment of sobriety to maintenance. Techniques useful during the stage when the client and the family are preparing to make changes in their lives include the following:. Multidimensional family therapy Liddle Motivate family to engage client in detoxification. Contract with the family for abstinence.

Contract with the family regarding its own treatment. Define problems and contract with family members to curtail the problems. Behavioral family therapy Kirby et al. Interview the family in relation to the larger system. Interview the family and people in other larger systems that assist the family. Interview larger system representatives, such as school counselors, without the family present. Bowen family system therapy Bowen Reduce levels of anxiety. Create a genogram showing multigenerational substance abuse; explore family disruption from system events, such as immigration or holocaust.

Orient the nuclear family toward facts versus reactions by using factual questioning. Alter triangulation by coaching families to take different interactional positions. Ask individual family members more questions, so the whole family learns more about itself. During the time that the client and the family are getting used to the changes in their lives, the following techniques are suggested by different models of family therapy:. Realign subsystem and generational boundaries. Reestablish boundaries between the family and the outside world.

Multidimensional family therapy Liddle ; Liddle et al. Teach communication and conflict resolution skills. Assess developmental stages of each person in the family. Consider family system interactions based on personality disorders, and consider whether to medicate for depression, anxiety, or posttraumatic stress disorder. Consider whether to address loss and mourning, along with sexual or physical abuse.

Cognitive—behavioral family therapy Azrin et al. Establish a problem definition. Employ structure and strategy. Use communication skills and negotiation skills training. Employ conflict resolution techniques. Delineate and redistribute tasks among all service providers working with the family. Use rituals when clients are receiving simultaneous and conflicting messages. Ask scaling and relational questions. Identify exceptions to problem behavior.

Identify problem and solution sequences. The following techniques are suitable during the period when the gains made by the client and the family during treatment are being solidified and safeguards against relapse or returning to old habits are being implemented:. For instance, agree with Child Protective Services that once the family has completed treatment, the child ren can be returned to the home.

Treatment goals for children in alcoholic families and adult children of people with substance use disorders include educating children about drinking; helping parents assume appropriate responsibility as parents; and examining the role the adult played in his family of origin and how that role affects current relationships Bepko and Krestan Harm reduction concepts e.

Turn recording back on. National Center for Biotechnology Information , U. Integrated Substance Abuse Treatment and Family Therapy Most substance abuse treatment agencies serve a variety of clients—men and women, young and old, homeless and affluent individuals, from every racial and ethnic majority and minority group—with a wide range of substance abuse profiles.

Value of Integrated Models for Clients Models of family therapy have been evolving over the past 60 years as counselors and researchers have worked to identify the determinants of substance use disorders, the factors that maintain these disorders, and the complex relationships between people with the disorders and their family members McCrady and Epstein Paying attention to such issues has a number of advantages: When families are involved in treatment, the focus can be on the larger family issues, not just the substance abuse. Both the individual with the substance use disorder and the family members get the help they need to achieve and maintain abstinence Collins Integrated models can help reduce the impact and recurrence of substance use disorders in different generations.

Consensus Panel Member Fred Andes. Value of Integrated Models for Treatment Professionals In addition to the benefits for clients and their families, integrated models are advantageous to treatment providers. Nevertheless, the therapist should recognize when sufficient venting has occurred. A good rule of thumb is to allow caregivers to vent 5—10 minutes at the beginning of sessions and then redirect the session toward achieving therapeutic goals. At times, a forceful communication style slightly louder volume, firm voice can be used strategically to help a therapist better match to a caregiver.

However, forceful language should only be used for strength-focused content that is intended to a praise or b infuse hope. Caregivers are often relieved when the therapist acknowledges that a communication mismatch is occurring. By using this approach, therapists can increase authenticity in their relationship and model effective communication. For example, a therapist might say,. What do you think is happening right now? Agreeing on an agenda and preparing clients for interruptions can help make transitions easier.

So I might cut in sometimes to make sure that we take care of all the things we want to accomplish today. So if there is a time when I stop you and you feel like there was a concern that you did not get to express, can you let me know so we can reserve time at the end of the session to revisit your concern?

Ana was a year-old girl of Dominican descent who was referred to MST due to community re-entry problems after 8 months of residential treatment. These problems included delinquent behaviors such as school truancy; running away overnight to spend time with an over-age, gang-affiliated boyfriend; and stealing from the home. Ana was previously diagnosed with Conduct Disorder and Major Depressive Disorder and was being treated with antidepressants at the time of referral.

She resided with both parents, whose primary language was Spanish, and two younger siblings in a low-income urban area. Similarly, Marie experienced anxiety about the possibility of the family engaging more with the interpreter who was also from the Dominican Republic.

They had a fear that everything was going to be pulled out from under them. So I tried to be very practical. That was my avenue to get into the family, to get them through the process. Marie noted that a supportive, nonjudgmental style demonstrated mostly through reflective listening was essential to drawing family members out. Marie initially approached this matter directly, leading the father to walk out of a session. Marie recognized that she had made a misstep and acknowledged such during the next session.

That we still needed to accomplish these ends, but that they could guide us in getting there. Marie emphasized her previous successes treating families with similar problems and recalled the competence the family had demonstrated thus far. As the end of treatment approached, Marie evaluated the sustainability of changes made by the family by delineating factors that had contributed to their success.

When doing so, she observed that Ana had become increasingly disengaged in sessions as termination approached. By reorienting the family toward a strength-based view, Marie imbued them with confidence to manage their daughter beyond treatment termination. Due to their achievement of overarching goals and the elimination of referral behaviors, Ana and her family did not require additional services after MST.

In the months following termination, Ana successfully completed probation and maintained good attendance and improved grades in school. Many of the engagement and collaboration strategies used by MST and other evidence-based family therapies are similar to those used by virtually all psychotherapies e. The latter include the identification of strengths across multiple systems, harnessing family supports to assist with interventions and during times of disengagement, and the maintenance of a family versus a child focus during treatment.

Although research has not examined which combination of collaboration strategies is most effective in engaging families, there is little doubt that these family therapy methods are key to building collaborative relations with families that have traditionally presented substantive barriers to the delivery of mental health or substance abuse treatment. Moreover, these engagement strategies are seen as essential to facilitating the attainment of treatment goals. In family therapy, neither collaboration nor therapist-offered characteristics are viewed as the curative factors.

Rather, engagement strategies are viewed as critical preconditions to motivate families to change their styles of functioning to better support the psychosocial needs of their children. Favorable clinical outcomes for youths are driven by the behavior changes that families make. The authors wish to thank Dr. Sylvia Rowlands and the BlueSky program staff at the New York Foundling for sharing their clinical experiences and providing thoughtful contributions to this article. National Center for Biotechnology Information , U.

Author manuscript; available in PMC Jul 3. Elena Hontoria Tuerk , Michael R. McCart , and Scott W. Author information Copyright and License information Disclaimer. Medical University of South Carolina. Correspondence concerning this article should be addressed to Scott W.

Elena Hontoria Tuerk, Michael R. McCart, and Scott W. The publisher's final edited version of this article is available at J Clin Psychol. See other articles in PMC that cite the published article. Abstract This article summarizes and illustrates the collaboration strategies used by several family therapies. Collaboration, family therapy, multisystemic therapy, engagement strategies, therapeutic alliance.

Collaboration in Family Therapy A fundamental assumption of the new generation of evidence-based family therapy approaches is that family engagement and collaboration are essential for therapeutic progress. Identifying Strengths across Multiple Systems Families referred for MST often have a history of treatment experiences that focused primarily on individual- and family-level deficits. Empathy The importance of therapist empathy cuts across schools of psychotherapy.

Family-Centered Care: Current Applications and Future Directions in Pediatric Health Care

The following phrases can be used to help therapists identify warning signs of bias in their work: Therapist — 1, Family — 0 e. The Grass is Greener on the Waiting List e. Ad Hominem Attacks e. Perspective taking For this strategy, therapists recall a particular incident or client statement that produced a negative reaction.

What underlying message was the client trying to convey when this occurred? What was he or she feeling? What got in the way of the client communicating his or her message in a way that would make me feel more positively? How did the client get to this point today, this month, in their lifetime? How has communicating in this way been useful for the client in the past? How does it demonstrate his or her suffering?

How can I show the client that he or she does not need to behave in this way to get help from others? Collecting data Therapists can also make a conscious effort to seek evidence that refutes their negative attributions. This can be accomplished through the following exercise: The therapist records the thought that needs to be disconfirmed e.

The therapist then generates a list of client statements or behaviors that suggest effort, motivation for change, or positive feelings — anything that could disconfirm the maladaptive thought. The therapist remains patient with the process of finding evidence that disconfirms the maladaptive thought e. The therapist also recognizes that clients are moving targets. For example, a mother might show little evidence that she cares about her son right now, but the therapist remains open to the possibility that this situation is likely temporary.

Reframing Family negativity is often exacerbated by the harsh views that family members have toward each other. Authenticity and Flexibility Therapists strive to be authentic and flexible when working with families. Bucci-Rechtweg agreed, stressing that current incentives benefit companies late in the life cycle of drugs rather than earlier in drug development.

In , FDA created a program in which it could give priority review vouchers to sponsors of drugs for rare pediatric diseases Varond and Walsh, But that benefit has been diluted by other priority review mechanisms at FDA, Reaman said. Reaman suggested that another option is to develop public—private partnerships to fund the development of new drugs for childhood cancers. Collaborations among private foundations can also be useful see Box 2. Since the Society was formed in , it has invested more than a billion dollars in research grants.

Greenberger noted that their career development awards for researchers early in their careers have been especially productive because those who receive them tend to continue to do research on blood cancers. Some ended up running major programs in this area 15 to 20 years later, including two researchers at the forefront of discovering or testing innovative immunotherapies that are showing promise in treating a number of cancers.

Once that initial evidence is available, drug companies are more likely to do the additional testing needed to bring a drug into the market. TAP also has a clinical trials program that helps patients gain access to trials in their local communities. Pizzo noted that the Cystic Fibrosis Foundation collaborated with researchers who discovered drugs that target some of the genetic defects that cause cystic fibrosis and fostered the development of those drugs, which are currently on the market.

Reaman echoed the plea for parents and advocates to become more involved in drug development and noted that advocates did make a difference in adult drug development. However, he added that the one-foundation-one-disease approach may fracture the ability to make progress, noting that there are about 3, organizations involved in raising money related to cancer, all with their own agendas.

He pointed out that many genetic discoveries on pediatric cancers have proven beneficial in adult cancers and vice versa. Baber suggested more general public funds, such as small business innovation research grants, could be used to support drug development for pediatric cancers, and that there be more targeted use of disease foundation funds for drug discovery and development. She stressed the gap between government and foundation funding for research that generates data on promising drug targets, and the pharmaceutical and venture capital funding of clinical trials based on those discoveries.

Baber became aware of that gap when her month-old son was diagnosed with a brain tumor. At that time she and her husband both conducted basic research on the DNA damage and repair pathways that can determine cancer susceptibility, and they were advocates for the precision medicine approach that this research suggests is possible. They were shocked to discover a lack of biomarkers available for clinical use that could help them decide the best treatment for their son, even though researchers had published papers on potentially useful biomarkers.

Closing that gap will require collaboration among all stakeholders, including patients and families, clinicians, funding agencies, philanthropic organizations, academic research institutions, the pharmaceutical industry, regulatory agencies, advocates, policy makers, and payers, she stressed. Reaman also suggested there should be more patient-focused drug development, in which the benefits of treatments are also measured by how they reduce disease-related symptoms and enhance function in daily life, rather than simply focusing on length of survival.

Smith stressed this as well, noting that current legislative incentives and industry paradigms for drug development are not patient focused and do not foster the conduct of the clinical trials that may be most needed for specific patient populations. Instead of asking what is the best clinical trial for a given drug, researchers should.

This is especially true for rare pediatric cancers in which the number of patients available for clinical trials is limited, he pointed out. A key focus of the workshop was the integration of palliative care throughout the pediatric cancer care continuum to improve quality of life as well as survival. For children and their families, treating the pain, symptoms, and stress of cancer is as important as treating the disease Kaye et al. Pediatric palliative care lessens physical, psychosocial, emotional, and existential suffering and focuses on improving quality of life for both the child and family.

It is appropriate at any age and any disease stage and should be provided along with curative treatment. Pediatric palliative care specialists also help parents and children have a voice in realizing their treatment goals.

One study found that about half of cancer patients ages 7 to 12 who completed a questionnaire reported experiencing fatigue and about one-third reported having pain. Nearly half also reported being worried or nervous. Another study found that 89 percent of children who died of cancer experienced substantial suffering.

Addressing these concerning findings, evidence emerging over the past decade has firmly established the importance of pairing palliative care, including psychosocial support, with oncology treatment for adults and children in all care settings throughout cancer treatment and across the continuum of survivorship.

Palliative care is also naturally aligned with other interventions such as cancer rehabilitation that focus on treating specific impairments and improving function as well as alleviating symptoms. Together, these integrated services offer vital support for maintaining patient and family quality of life during and after disease-directed treatment.

As such, multiple professional organizations and accrediting entities have now endorsed early integration of palliative care to improve the quality of care for all seriously ill adults and children across the full trajectory of care AAP, ; ACS, ; CoC, ; IOM, b, ; Levetown et al. Despite recognition of the importance of palliative care for pediatric patients, health care professionals have been slow to implement recommended pediatric palliative care in their practices and institutions, according to Lori Wiener, co-director of Behavioral Science Core and director of the Psychosocial Support and Research Program in the Pediatric Oncology Branch of the NCI Center for Cancer Research.

One study found that the two main barriers to pediatric palliative care integration were ineffective communication including about palliative care between health care providers and families, and a lack of resource alignment with patient and family needs Kassam et al. Generalist Plus Specialist Palliative Care. A large majority of health care providers lack formal education, training, or experience in pediatric palliative care or in providing care for children at the end of life, said Wiener. Several participants stressed the importance of supporting initiatives for training and increasing access to both generalist- and specialist-level palliative care in pediatric oncology programs, and making these essential services available in all settings where children receive cancer care—whether inpatient, ambulatory clinic, or at home.

Training needs noted for physicians, nurses, social workers, child life specialists, and other professionals specifically included enhancing communication skills such as discussing prognosis, goals of care, and care. Generalist palliative care involves the basic management of pain, symptoms, and communications e.

Both levels of care can and should coexist, support each other, and expand palliative care delivery, said Chris Feudtner, the Steven D. End-of-Life Care and Bereavement Care. For children with cancers that are not responsive to treatment, high-quality pediatric end-of-life care such as hospice care is needed. These services may be available via a free-standing hospice facility, a hospital, or at home, but many workshop participants stressed that such care must be accessible to all families where they live.

More than 3, hospices in the United States currently will provide end-of-life care for children, but there is a dearth of free-standing, pediatric in-patient hospice programs, Wiener reported. The first such program opened in California in For example, efforts to build a pediatric hospice targeting unmet end-of-life and respite care needs for children and families in Seattle 5 have been stalled for lack of funding.

Unfortunately, even when hospice care is available in the community, it does not always adequately meet the specific needs of pediatric patients and their families. One father reported that the care his son received while he was at home, in his final days, was nowhere near the quality of care that he received while he was getting treatment. As a result, 7-year-old Evan died in his home experiencing excruciating pain, breathlessness, and associated anxiety—circumstances that were also extremely distressing for his parents see Box 3. The death of a child has a profound and lasting impact on the entire family.

Bereavement care is provided to help support coping and recovery for the surviving parents and siblings after a child dies. Bereaved parents have been shown to be at increased risk for prolonged grief, isolation, potential economic and health decline, and behavioral health and emotional concerns, Wiener reported Rosenberg et al.

One study of parents whose children had died of cancer between 6 months and 6 years ago found that 40 percent of the parents expressed the need for bereavement services, but were not receiving any. More than one-third had received such service, but had dropped out because they believed the therapist did not understand them.

In another study, nearly half expressed a need for bereavement services 2 to 4 years after the loss of their child Lichtenthal, However, screening for bereavement needs, if it is performed at all, is usually only done within the first year after the death of the child, Wiener noted. Three parents who had lost children to cancer spoke about their experiences and provided personal perspectives on the suffering they witnessed and experienced firsthand.

She suffered 13 months of debilitating procedures before her death. Her treatment led to extensive and unrelenting mouth sores, severe sepsis when she was neutropenic, and finally, a seizure that led to blindness, muteness, and complete incapacitation. Cullen also described the worst horrors she and her husband endured as parents: Zipping up a white body bag. Purchasing a pink coffin. And then having to carry on with life and raise a son. But unfortunately, care supporting those goals was not provided adequately.

Instead we had nurses who came to see us from an adult hospital. Their experience and expertise was in caring for adults. Because the nurses were not comfortable administering intravenous pain medicines to pediatric patients, Evan was not given effective pain relievers and experienced extreme discomfort, distress, and anxiety. In addition, Evan had respiratory challenges that were not appropriately anticipated or addressed.

Home was the right place for my son to pass, but what was wrong was the type of care he received. We put our trust and faith in the providers and in the system and that was a mistake on our part. There was a lack of communication. There was a lack of transparency about what was happening and why.

Children with cancer fight too hard every single day to be left with a fate like that. The hospice system failed our son and as a result, we feel like we failed our son. Those thoughts stay with you. On your worst days, they haunt you. Lindberg stressed the need to improve accessibility of high-quality end-of-life care for children at home.

Because we can fix licensing, fund-. During the panel discussion, a participant noted that his daughter also received inadequate home hospice care until the adult nurse caring for her was replaced with a pediatric nurse.

Victoria Sardi-Brown lost her son Mattie, who had bone cancer, when he was 7 years old. Mattie died in the hospital. Throughout his 14 months of treatment, Mattie also experienced tremendous pain that was not validated and treated adequately by his practitioners. Nor did they ever use a distress thermometer or other assessment tool to gauge his degree of distress and pain.

Cancer care is much more than just about the medicine. Otis Brawley of the American Cancer Society underscored the importance of these moving personal testimonies that so glaringly reveal the shortcomings of cancer care for children and their families. Big momentum comes from parents with personal experiences talking to people on Capitol Hill who have been elected.

The Role of Communication.

It also can relieve distress and uncertainty and provides supportive care by building a therapeutic relationship. Because of the worry that relaying bad news may cause distress and take away the hope of patients and their families, many clinicians avoid opportunities to communicate and wait for patients or parents to ask for information instead of offering it, or speak in euphemisms or offer overly optimistic information, according to Mack. In the end-of-life setting, parents of children who ultimately died of cancer tended to recognize that the child had no realistic chance of cure more than 3 months later than the physician did Wolfe et al.

Although it seems counterintuitive, honest communication of bad news can not only be helpful, it can also relieve distress, Mack explained. Her studies show that parents of children with cancer consider communication about prognosis to be very important to them and helpful to decision making, even when they also find it upsetting, and parents who feel they have too little information about prognosis are actually those most likely to feel upset.

Prognostic disclosure is also linked with a greater. Although these findings can be puzzling at first glance, Mack pointed out studies that show uncertainty is distressing and makes people fear the worst. Honest communication can relieve that uncertainty and distress Mack et al. Ultimately, promoting false hope is not a goal of medicine, but being with patients and families through hard times is. Victoria Sardi-Brown, the parent of a child who died from cancer, noted that it was a nurse, not a doctor, who pulled her aside to tell her that her child was dying.

Once I found out we were dealing with end-of-life care, I did have hope. Hope changes along the continuum. Such communication and empowerment is important at the end of life, but families should be having conversations with their providers early on about care options and planning for their children, said Wolfe. Wiener also stressed the importance of doing care planning soon after diagnosis to help ensure treatments are aligned with patient and family goals.

Both advanced care planning and palliative care are associated with positive outcomes, she noted, including care consistent with patient preferences, better quality of life, less distress, and longer survival. Wiener developed an advanced planning guide for adolescents and young adults called Voicing My Choices. A recent IOM report also recognizes the importance of such conversations and recommends a life-cycle model, in which advanced care planning occurs at key developmental milestones, including when a life-limiting illness is diagnosed IOM, This plan should be revisited periodically by both patient and providers and should become more specific as changing health status warrants.

Listening is another key component of provider communication and the ability of health care practitioners to administer effective palliative care, Mack stressed, as it builds the therapeutic relationship and gives patients and their families the opportunity to explore what is important or what is lacking in their care. Helpful questions include those that ask patients and their families to contemplate the future and indicate what is most important to them and what they are most worried about, as well as what hopes they have; parents are asked what it means to them to be a good parent in the situation they are facing Feudtner, ; Feudtner et al.

One study found that clinicians often reach a decision about the preferred direction of care and then present it to parents, but parents often wish for a more active role in care decisions de Vos et al. Parents also often seek options beyond what is offered by the oncologist, who needs to listen to those options before making recommendations, Mack said Bluebond-Langner et al. Wiener pointed out that one reason effective communication about palliative care is often not provided is because palliative care suffers from an identity problem—many clinicians mistakenly equate palliative care with end-of-life care and hospice Parikh et al.

Most pediatric oncologists learn to give such care by trial and error Hilden et al. Nurses also often lack training in pediatric palliative care, she added Pearson, Parents frequently are not knowledgeable about palliative care or misunderstand it as appropriate only at the end of life when cure is not possible. As with the CAPC poll, few parents in the ACCO survey were knowledgeable about palliative care, but the majority 86 percent; Kirch and Ullrich, confirmed they would want it for their child when palliative care was defined as care focused on quality of life for the patient and family that manages the pain, symptoms, and stress of serious illness and can be provided along with curative treatment, Wiener noted.

Wolfe presentation, March 9, Emerging evidence supports the notion that pediatric palliative care is beneficial to children and their families, Wolfe reported. Pediatric cancer patients who received this care were more likely to have fun 70 percent versus 45 percent and to experience events that added meaning to life 89 percent versus 63 percent Friedrichsdorf et al. Children receiving pediatric palliative care also experience shorter hospitalizations and fewer emergency department visits Ananth et al.

In addition, families who received palliative care for their children with cancer report improved communication Kassam et al. When children with cancer and their parents are accurately told what palliative care offers, most indicated they would want to meet a palliative care team around the time of diagnosis Levine et al.

However, despite the need for pediatric palliative care, few facilities adequately provide it, Wolfe noted. Contrary to American Academy of Pediatrics AAP policy, which recommends broad availability of pediatric palliative care services based on child-specific guidelines and standards AAP, , only 58 percent of COG member institutions have access to a pediatric palliative care service Johnston et al.

Another study found that only 3 of 15 valued elements of palliative care were accessible to the families of children with cancer Kassam et al. Several studies done by Wolfe and others have documented that there is insufficient relief of the pain and suffering of pediatric cancer patients, even at facilities that offer robust palliative care. Most children in the last month of life suffer from pain, fatigue, and difficulty breathing, according to the reports of parents Wolfe et al.

Another study found that most children with advanced cancer reported experiencing pain, fatigue, and other symptoms that were linked to high distress levels. Feudtner stressed that pain medications can be effective. Several workshop participants suggested various policy measures that could improve access to high-quality pediatric palliative care across the care continuum, including developing standards and incentives for such care, educating health care providers and parents about palliative care, and providing more funding for and research on such care.

Wiener pointed out the need for more evidence-based standards in pediatric palliative care, noting that there is only one standard, which is supported by 36 studies: The same is true for standards. Peter Brown, co-founder of the Mattie Miracle Cancer Foundation, also called for the development of standards for palliative care and psychosocial support, similar to medical standards of care. He also suggested that accreditation entities for health care institutions should require screening for psychosocial needs. Wiener suggested that core competencies in pediatric palliative care be implemented in schools of medicine, nursing, social work, psychology, and counseling.

Feudtner called on medical schools to train physicians in practicing kindness, and imbuing them with a sense of duty and responsibility around kindness. Parents also need to be educated about pediatric palliative care and how it can help them and their children throughout the care continuum, Wiener pointed out. Once they are aware of what palliative care offers, few parents would turn it down, she said.

No, we make the referral right away because we want the child to have the very best care possible. Wolfe added that there are family. Several participants also called for more research on pediatric palliative care. Feudtner observed that there is a huge gap in what is known and what needs to be known in this area. Wolfe said one study found that the key gaps center around knowing what matters most to parents and their children receiving palliative care, defining the best practices in pain and symptom management, implementing effective strategies in alleviating suffering, and identifying the bereavement needs of families Steele et al.

Another study provided the basis for consensus on 20 pediatric palliative care research priorities thematically grouped into decision making, care coordination, symptom management, and quality improvement Baker et al. Mack also stressed the need to support research on the most effective communication techniques to use when providing pediatric palliative care. Several participants pointed out the lack of funding for pediatric palliative care programs. It is too important not to be supported. Other states, such as California and Florida, have Medicaid waiver programs that enable enhanced pediatric hospice care in the home setting, she added.

From the time of diagnosis onward, cancer poses many psychosocial challenges for a child as well as for his or her family, including anxiety over treatment or the possibility of dying, the stress of dealing with demanding treatments, and school and peer issues. Workshop participants discussed the psychosocial needs of children and their families and provided examples of ways to predict and screen for distress as well as interventions to alleviate distress.

Participants also discussed standards of psychosocial care, capacity for providing that care, and research needs. Mary Jo Kupst, Professor Emeritus at the Medical College of Wisconsin, gave an overview of some of these psychosocial challenges, beginning with diagnosis when there can be stress from information overload, with families expected to make rapid treatment decisions so the child can quickly begin treatment.

In addition, both the patients and their families are navigating a new environment with new staff, especially if care occurs away from their communities. Even if families remain in the same town, they are spending an inordinate amount of time away from their homes and in the hospital with their children, who are receiving painful or distressing procedures with disturbing side effects. Survivorship requires continued monitoring of health status for the late effects of treatment that can disrupt life plans and goals.

Surviving cancer can affect academic, vocational, social, and spiritual pursuits, Kupst pointed out CCSS, When relapse and recurrence occurs, there is more treatment and uncertainty and a greater threat of death and difficulty maintaining hope. This is especially true once the child progresses to end-of-life care. Psychosocial Needs for Pediatric Patients. How pediatric patients react psychologically to a diagnosis of cancer and the subsequent treatment depends on their developmental stage, Kupst noted.

Very young children have a number of issues they have to cope with, including fear of separating from their parents or of having painful or frightening treatments. In response to these stresses, their behavior can change and regress. They may attempt to control what they cannot control, have tantrums, cling to their parents, exhibit aggressive behavior, or withdraw from social interactions, Kupst said.

Thus, she said the need for psychosocial support varies greatly among pediatric patients, and interventions should be targeted to the needs of individual patients. Disruption of school is one of the biggest strains on school-aged children. School-aged children also experience a loss of peer interactions and activities while undergoing treatment, as well as distress over various procedures to which they are subjected.

These older children have a greater understanding of the seriousness of their cancer and may seek emotional and social support. One parent of a 7-year-old diagnosed with cancer noted that after undergoing major treatments that put him in a wheelchair, he suffered from depression, anxiety, and posttraumatic stress disorder. Adolescents have many of the same issues as younger children, Kupst pointed out, with the addition of the strain the cancer is placing on their quest for independence at this stage.

Adolescents with cancer have an increased need for and use of social support, and are more focused on identity issues and image. They tend to use humor, self-talk, diversion, and positive reappraisal to cope with the stress of having cancer, but can also exhibit risk-taking behavior, according to Kupst Kupst and Bingen, Cancer in young adults may postpone, interrupt, or alter their romantic relationships and academic or vocational pursuits.

They tend to have more concerns about how the long-term effects of cancer will affect their careers, fertility, and finances, Kupst said. Their coping strategies are similar to those of adolescents with cancer, she added, although more research is needed in this regard. To assess peer relationships among pediatric cancer patients, he relies on two sets of peer measures: Such peer reports tend to be reliable and predictable of occupational and social success, according to Noll.

Although he expected pediatric cancer survivors would be isolated and victimized, have fewer friends, and be less well liked, he did not find evidence for that, except for those who had brain tumors. The only difference peers reported were that cancer survivors were less aggressive and disruptive Reiter-Purtill et al. However, peer reports on pediatric survivors of brain tumors, provided 3. When this becomes a problem for these children is not known exactly, but Noll suspects that when they first return to school after treatment they may socially resemble those of their peers, but over time they start to develop not only neurocognitive problems, but some significant social problems.

Psychosocial Needs of Families. Pediatric cancer is devastating to families, but Kupst said that most children and families are ultimately able to cope with the disease, treatment, and its aftermath Abrams et al. Eric Sandler noted the fatigue and social and school difficulties his daughter experienced during and after treatment for leukemia. Other parents spoke of rigorous cancer treatments and the psychological toll it took on their child and themselves. Alexandra had such extensive mouth sores from high-dose chemotherapy that she had to be fed intravenously, and the treatment required around-the-clock baths to wash off chemicals that can cause skin burns.

As a consequence, Mattie had clinical depression, anxiety, and posttraumatic stress disorder, which required him to take psychotropic medications. The predominant focus is always on medical care and drug development, yet any of us who has helped a child endure medical treatment knows that there are psychosocial issues just as complex and heartbreaking to manage, such as when your child tells you he feels ugly and that no one wants to be his friend because he is so different, or when he is in such excruciating pain that he is screaming uncontrollably, or worse, when he is telling you he knows he is dying.

Anne Kazak, co-director of the Nemours Center for Healthcare Delivery Science and professor of pediatrics at the Thomas Jefferson University, agreed, stressing that although the majority of families are resilient, many have psychosocial concerns that could be addressed with evidence-based treatments. Kupst pointed out the variability in how families cope with cancer, and said that the ability of the child to cope influences how well the parents cope and vice versa. Some families pull together in response to cancer, while others are pulled apart by the disease.

A cross-sectional study that takes only a snapshot at one time might indicate a family is doing poorly, while a longitudinal study may show them adapting and improving over time Compas et al. These children and families experience significant distress, posttraumatic stress, or other problems at some time during and after treatment that indicate need for increased care Abrams et al. Posttraumatic stress is often high in parents of children with cancer and in pediatric cancer survivors, but can lessen over time.

Psychological growth also can occur over time, Kupst noted Picoraro et al. There are also more evidence-based interventions, especially starting early in treatment, Kupst added. Predicting and Screening for Distress. Identifying children and families in distress is a first step in targeting psychosocial interventions to address their unique needs. In this model, all families are provided basic psychoeducation and family-centered support.

Families with more acute or elevated distress or significant risk factors are provided with interventions specific to their symptoms or needs. Families with severe, escalating, or persistent distress are offered more intensive clinical psychosocial services. They are going to require the expertise of a. This model uses a three-tiered approach to address the psychosocial care needs of the child and family. Basic psychoeducation, family-centered support, and screening for psychosocial risk factors are provided to all families. There are three levels of psychosocial risk: Interventions are tailored to families based on their unique needs and risk level.

Kazak and others have developed a number of screening tools for psychosocial distress, with varying complexity. One of the easiest and briefest screening tools is called a distress thermometer and is akin to the pain thermometer patients use to report their degree of pain. In addition to rating their distress on a scale of 1 to 10, there are additional categories for.

Structured clinical interviews can generate a richer amount of information, but take more time to conduct. These interviews are not widely used because of the training and time involved in conducting them, according to Kazak. There are also standardized instruments for measuring distress that take less time to use, including one Kazak developed called the Psychosocial Assessment Tool PAT.

PAT is a brief parent-reported screen of psychosocial risk. It has also been translated into several languages, and there are low-literacy versions in English and Spanish. PAT is composed of a two-page questionnaire and is currently being used in more than 50 sites in the United States and 30 sites internationally, mostly in oncology settings, Kazak reported. Based on research findings and clinical expertise, PAT generates a numerical score for the answers parents give in a number of domains, including family demographics, structure, resources, beliefs, problems, stress responses, and social resources see Table 1.

PAT has been clinically validated and is available in a number of formats, including paper or digital versions compatible with iPads and electronic medical record systems.

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