IMPLEMENTATION

Increasing the Evidence Base for Psychosocial Care

By studying and learning about implementation of the Standards

GRANTS & STUDIES

Implementation of the Psychosocial Standards of Care

September 2019

Spencer Moorman, MSSW, CSW, was hired as the first full time Pediatric Hematology/Oncology Social Worker at The University of Louisville Physicians Pediatric Cancer and Blood Disorders/Norton Children’s Hospital, in 2015. Without a previously established psychosocial path to emulate and the overwhelming responsibility of every oncology and bleeding disorder patient under her umbrella, Spencer began tallying the various topics, issues, and concerns encountered in daily practice in an effort to identify the resources, assessments, and foundational support needed to help fill gaps in patient care. When she stumbled upon the Standards of Care in early 2016, they immediately provided her an invaluable template from which to work from in categorizing topics, organizational resources, talking points, interventions, and to access baseline psychosocial care delivery. Their establishment motivated Spencer to create a psychosocial road map and tracking tool complete with individualized checklists pertinent to each standard in an effort to promote proactive psychosocial support, operationalized care across the board, and clearly defined expectations for families.

 

The Standards also provided Spencer with the evidence-based artillery needed to advocate for increased support at her institution in order to improve psychosocial standard of care execution and holistic wellness for children and families impacted by childhood cancer. Thanks to Mattie Miracle’s mission and the gift of these game changing Standards, two additional full-time social workers have recently joined forces with Spencer while the continued building of a comprehensive psychosocial program remains a priority at her center amidst the exciting integration of healthcare institutions. Spencer recognizes Mattie’s legacy and the strength of these crucial Standards in helping to make rapid growth, progress, and ever widening awareness that “It’s not just about the medicine” possible.

Implementation Focus Group

April 11, 2018

Mattie Miracle is proud that its vision for the development of Psychosocial Standards of Care became a reality on December 23, 2015. Such a vision would never have been achieved without the incredible leadership of our core team of psychosocial professionals. However, Mattie Miracle’s commitment does not end with the publication in Pediatric Blood & Cancer. We are determined to have these evidence based Psychosocial Standards of Care implemented at all cancer treatment centers in the United States. The purpose of the Standards is to ensure that children with cancer and their families have access to optimal psychosocial care from the time of diagnosis, throughout treatment, and into survivorship or end of life and bereavement care.  

 

We realize that the Standards must be streamlined and presented in a more usable format for clinicians. So that clinicians can assess, implement, and improve on the delivery of the Standards of Care at their sites. In an effort to achieve this implementation goal, on April 11, Mattie Miracle hosted a focus group luncheon at the Association of Pediatric Oncology Social Workers (APOSW) 42nd Annual Conference in Austin, TX.  The focus group was attended by 13 social workers from around the country and was facilitated by Dr. Lori Wiener and Greg Baiocchi.

 

Greg Baiocchi (a Four Diamonds Social Worker at Penn State Children’s Hospital) stated, “the group came prepared to engage in discussion and were very excited to be involved in such an important task. The 13 participants came from different treatment sites and have varying levels of experience. The blend made for a wonderful interaction.  All of the focus group members are committed to continue their participation in this most worthwhile process. I would like to extend a very special thank you to the Mattie Miracle Cancer Foundation for sponsoring this focus group luncheon. It was delicious and added to the group process. Thank you for your ongoing support!”

Implementation Grants with the American Psychosocial Oncology Society (APOS)

March 2018

Mattie Miracle offers $20,000 in psychosocial grants to researchers!  Grants are offered through the Association of Pediatric Hematology/Oncology Nurses (APHON) and the American Psychosocial Oncology Society (APOS)! We thank both APHON and APOS for standing behind our psychosocial mission.

Recently we created The Mattie Miracle Early Investigator Award for APOS clinicians who wish to support research that aims to help implement any of the 15 published Pediatric Psychosocial Standards of Care for Children with Cancer and Their Families.  

The goal of implementing the Standards is to ensure optimal psychosocial care for children with cancer and their families from the time of diagnosis, throughout treatment, into survivorship or end of life and bereavement care.

Implementation Grants with the Association of Pediatric Hematology/Oncology Nurses (APHON)

March 2018

This hour-long webinar is co-presented by Mary Baron Nelson, Ph.D., RN and Kathy Patterson Kelly, Ph.D., RN.  They discuss the development process of the Standards for Psychosocial Care for Children with Cancer and Their Families and the role of the Mattie Miracle Cancer Foundation in supporting implementation of these Standards of Care.  Strategies for developing an Evidence Based Practice (EBP) proposal to implement one of the two selected Standards for the 2018 Mattie Miracle/APHON EBP Grant will be compared: (1) Assessment of adherence to oral medication OR (2) Psychosocial follow‐up in survivorship.

Psychosocial standards of care for children with cancer and their families: A national survey of pediatric oncology social workers

Journal of Social Work in Health Care - 2018, VOL. 57, NO. 4, 221–249

Jones, B., Currin-Mcculloch, J., Pelletier, W., Sardi-Brown, V.A., Brown, P.J., & Wiener, L.

ABSTRACT:

In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families.  This paper presents data from a national survey of pediatric oncology social workers and their experiences in delivering psychosocial care to children and families.  In total, 107 social workers from 81 cancer institutions participated in a 25-item online survey that mirrored the 15 Standards for Psychosocial Care.  Both closed and open-ended questions were included.

Social work participants reported that psychosocial support is being provided at most cancer centers surveyed, primarily by social workers and child life specialists, addressing adaptation to the cancer diagnosis, treatment, and transitions into survivorship or end-of-life care and bereavement.  While social workers reported offering comprehensive services throughout the cancer trajectory, many of the 2015 Standards are not being systematically implemented.  Areas for improvement include funding for psychosocial support staff and programs, incorporation of standardized assessment measures, assessment for financial burden throughout treatment and beyond, consistent access to psychology and psychiatry, integrated care for parents and siblings, and more inclusion of palliative care services from time of diagnosis.

Delivery of care consistent with the psychosocial standards in pediatric cancer: Current practices in the United States

Pediatric Blood & Cancer Volume 65, Issue 3 March 2018 e26869

Scialla, M.A., Canter, K.S., Chen, F.F., Kolb, E.A., Sandler, E., Wiener, L., & Kazak, A.E.

ABSTRACT


Background: With published evidence-based Standards for Psychosocial Care for Children with Cancer and their Families, it is important to know the current status of their implementation. This paper presents data on delivery of psychosocial care related to the Standards in the United States.

Procedure: Pediatric oncologists, psychosocial leaders, and administrators in pediatric oncology from 144 programs completed an online survey. Participants reported on the extent to which psychosocial care consistent with the Standards was implemented and was comprehensive and state of the art. They also reported on specific practices and services for each Standard and the extent to which psychosocial care was integrated into broader medical care.

Results: Participants indicated that psychosocial care consistent with the Standards was usually or always provided at their center for most of the Standards. However, only half of the oncologists. (55.6%) and psychosocial leaders (45.6%) agreed or strongly agreed that their psychosocial care was comprehensive and state of the art. Types of psychosocial care provided included evidence-based and less established approaches but were most often provided when problems were identified, rather than proactively. The perception of state of the art care was associated with practices indicative of integrated psychosocial care and the extent to which the Standards are currently implemented.

Conclusion: Many oncologists and psychosocial leaders perceive that the delivery of psychosocial care at their center is consistent with the Standards. However, care is quite variable, with evidence for the value of more integrated models of psychosocial services.

Implementing the psychosocial standards in pediatric cancer: Current staffing and services available

Pediatric Blood & Cancer Volume 64, Issue 11 November 2017 e26634

Scialla, M.A., Canter, K.S., Chen, F.F., Kolb, E.A., Sandler, E., Wiener, L., & Kazak, A.E.

ABSTRACT

Background: Fifteen evidence-based Standards for Psychosocial Care for Children with Cancer and Their Families (Standards) were published in 2015.1 The Standards cover a broad range of topics and circumstances and require qualified multidisciplinary staff to be implemented. This paper presents data on the availability of psychosocial staff and existing practices at pediatric oncology programs in the United States, providing data that can be used to advocate for expanded services and prepare for implementation of the Standards.

Procedure: Up to three healthcare professionals from 144 programs (72% response rate) par-ticipated in an online survey conducted June–December 2016. There were 99 pediatric oncolo-gists with clinical leadership responsibility (Medical Director/Clinical Director), 132 psychosocial leaders in pediatric oncology (Director of Psychosocial Services/Manager/most senior staff member), and 58 administrators in pediatric oncology (Administrative Director/Business Administrator/Director of Operations). The primary outcomes were number and type of psychosocial staff, psychosocial practices, and identified challenges in the delivery of psychosocial care.

Results: Over 90% of programs have social workers and child life specialists who provide care to children with cancer and their families. Fewer programs have psychologists (60%), neuropsychologists (31%), or psychiatrists (19%). Challenges in psychosocial care are primarily based on prag-matic issues related to funding and reimbursement.

Conclusion: Most participating pediatric oncology programs appear to have at least the basic level of staffing necessary to implement of some of the Standards. However, the lack of a more comprehensive multidisciplinary team is a likely barrier in the implementation of the full set of Standards.

A Summary of Pediatric Palliative Care Team Structure and Services as Reported by Centers Caring for Children with Cancer

Journal of Palliative Medicine. November 2017, ahead of print. https://doi.org/10.1089/jpm.2017.0405

Weaver, M.S., Rosenberg, A.R., Tager, J., Wichman, C.S., & Wiener, L.

ABSTRACT


Background: Little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (PPC) providers serving children and adolescents with cancer. Objective: To summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care.

Methods: Cross-sectional online survey about the palliative care domains determined by the Psychosocial Care of Children with Cancer and Their Families Workgroup.

Subjects: A total of 142 surveys were completed with representation from 18 countries and 39 states. Results: Three-fourths of sites reported having a PPC program available for the pediatric cancer population at their center. Over one-fourth (28%) have been in existence less than five years. Fewer than half of sites (44%) offered 24/7 access to palliative care consultations. Neither hospital-based nor local community hospice services were available for pediatric patients at 24% of responding sites. A specific inpatient PPC unit was available at 8% of sites. Criteria for automatic palliative referrals (‘‘trigger’’ diagnoses) were reported by 44% respondents. The presence of such ‘‘triggers’’ increased the likelihood of palliative principle introduction 3.41 times (p < 0.003). Six percent of respondents perceived pediatric oncology patients and their families ‘‘always’’ were introduced to palliative care concepts and 17% reported children and families ‘‘always’’ received communication about palliative principles. The most prevalent barriers to palliative care were at the provider level.

Discussion: Children and adolescents with cancer do not yet receive concurrent palliative care as a universal standard.

Who is responsible for delivering palliative care to children with cancer?

Pediatric Blood & Cancer Volume 65, Issue 3 March 2018 e26889

Rodenberg, A., Weaver, M.S., & Wiener, L.

No ABSTRACT Available

Conclusions: First, education in pediatric palliative care ("PPC") concepts must begin in pediatric hematology/oncology fellowship.Prior studies suggest pediatric oncologists with formal training in PPC concepts report more confidence and success in treating complex end-of-life symptoms. At a minimum, fellows must become familiar with effective communication techniques, basic psychosocial assessment and support, and symptom assessment, including the evidence supporting each. Second, this education must be complemented with scholarship. By recognizing existing barriers, integrating formal training in PPC concepts, and creating opportunities for ongoing PPC oncology research, we will ultimately take better care of children with cancer and their families. The question of “Who is responsible for delivering PPC to children with cancer?” is best answered with a resounding “us,” and this collective “us” benefits from early preparation, formal training, and empowered partnership.

Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings

Palliative and Supportive Care, 2018 01-February, online publication, 1–6

Wiener L., Rosenberg A.R., Lichtenthal, W.G., Tager J., & Weaver, M.S.

ABSTRACT

Objective: The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this stan-dard is being implemented in current healthcare and palliative care practices, as well as bar-riers to its implementation.

Method: Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric pal-liative and bereavement program characteristics, as well as challenges and barriers to imple-mentation of the published standards of care.

Results: The majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child’s death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child’s death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool.

Significance of results: Lack of routine assessment of bereavement needs, inconsistent dura-tion of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.

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Mattie Miracle Cancer Foundation

P.O. Box 6485
Arlington, VA. 22206-0485

A 501(c)3 Public Charity

EIN: 27-1238358