Veritas: Harvard ALI and the My Kite Will Fly Story

My Kite Will Fly
 
"When we strengthen families, we ultimately strengthen the community." 
T Berry Brazelton, MD, Founder Brazelton Touchpoints, Boston, Mass.

 

“Children are the best sources of information on their own experiences…” 
Joseph Blatt, Parents and teachers together: A pocket guide to doing what’s best for kids in school, New York, Random House, 2012.

 

Sometimes tragedy shapes a leader’s personal and professional life in extraordinary and unintended ways.

Growing up in rural Australia had its advantages – a close-knit and supportive community together with strong ties to family and the land.

At age 16, Cynthia Holland left home to attend university in metropolitan Melbourne and the language of music, the piano, and the law appealed to her all in the context of living in a world wider than she had previously known.

During her final third year music exams, however, “one single night became a lifetime.” Scheduled to face a History of Opera exam the following morning, Cynthia decided not to join her six house friends for dinner as they set out for a mountain restaurant just an hour’s drive away.

The following morning she awoke at 6 am confronted by devastating news: all six friends had been killed in a car accident overnight.

It was a long walk to the church. Overwhelmed and profoundly shocked, she managed to deliver the eulogy for her best friend Sandra in her hometown where bereavement had united all. For Sandra’s parents the loss was inconsolable.

Yet, Cynthia was challenged to provide a reasoned response to a simple but universal question from Sandra’s five-year-old brother: ‘What does gone mean?’ her brother asked. Sandra’s younger brother couldn't understand what was different in the household, what all the crying was about and where was Sandra? But silence was the family code.

Although she didn’t recognize it at the time, this was a defining moment for her professional life that would become a call to action in the field of grief and loss, and lead her directly to Harvard University.

Fast-forward to 1991, the Royal Women’s Hospital, Melbourne, Australia and Cynthia Holland was working in a Comprehensive Cancer Care team managing women recently diagnosed with gynecological malignancies and their young families. It was here that the early foundations of the My Kite Will Fly (MKWF) program took shape aimed at improving communication and understanding in young children when a mother is diagnosed with a life-threatening gynecological cancer.

Whilst working at the Royal Women’s, Cynthia had identified “a very big disconnect between theory and real lived experience” for patients and families during cancer treatments. Her clinical work began to reinforce the view that children must feel safe to ask questions about things that they don’t understand and in turn, receive honest answers in language they understand. Subsequently commencing PhD research in the Medical Faculty at the University of Melbourne, along with the award of a Nauru Traveling Fellowship to Boston, Mass., offered her the major opportunity of direct contact with international palliative care and bereavement programs in clinical settings attached to Harvard Medical School and affiliated Boston hospitals.

It was through this personal exposure to the work of Drs. Avery Weisman and J. William Worden in the Department of Psychiatry at Harvard Medical School and their groundbreaking patient coping and cancer distress studies from the mid-1970s that Cynthia was inspired to forge new paths for her own investigative and clinical work in Psychosocial Oncology in Australia.

The nucleus of the MKWF program focused not only on recurrent parent concerns about their own prognosis, but also on stabilizing the futures of their vulnerable and dependent young children. Parents routinely asked such direct and emotionally confronting questions as: “How will I be able to care for my children while I am going through all this?” and ‘‘What will happen to our family and my children if I die?’’

Accordingly, the immediate aim of the program was to develop an effective ‘‘resource toolbox’’ for multidisciplinary practitioners to deepen a child’s understanding of the complex physical and emotional processes involved in parental cancer treatments and to simultaneously equip parents with effective communication strategies.  

The use of ‘art in crisis’ was another innovative element of the MKWF program drawn from the principles set out in Marge Heegaard’s inspirational books identifying art therapy as a valuable psychotherapeutic tool to assist children overwhelmed by feelings they might neither understand, nor express, when a mother is diagnosed with a life threatening cancer.

MKWF Collage

Stage 1 (1991-2006) of the program formed the nucleus of Cynthia’s initial PhD research, while Stage 2 (2009-2015) was sequentially undertaken as a postdoctoral thesis also located within the Faculty of Medicine at the University of Melbourne focusing on children 3-9 years living in families with life-threatening parental malignancy. The Stage 2 project offered children well-timed information and resources aimed at easing some of the profound sense of loss by creating a memorable ‘‘workbook’’ which they could reflect on and use for the rest of their lives as a record of their parent’s special knowledge about them once their lived memories began to fade. Children collected family details about childhood memories, favorite self-portraits and family adventures together. During a parent’s illness, children entered their stories into a ‘digital storybook’ with mothers participating in the story gathering process as their health allowed.

In 2009, further consolidation was made possible with a Jack Brockhoff Foundation Winston Churchill Memorial Trust Fellowship that enabled travel in 2010 to a number of world-leading Cancer Centres and Programs in New York and Boston including – Beth Israel Deaconess Medical Centre (Boston), The Good Grief Program (Boston), Brazelton Touchpoints Centre (Boston), Dana Farber Cancer Institute (Boston), and Harvard University Graduate School of Education (Cambridge). The work of the Boston based Good Grief Program, the insights of Harvard education specialist Betsy McAlister Groves, and the deeply informed research and writings of Harvard pediatrician T. Berry Brazelton in childhood development and trauma, were all fundamental to MKWF program development.

Undoubtedly one of the great professional highlights of her career and MKWF was participation in the Harvard Advanced Leadership Initiative, a program specifically “designed to enhance and leverage the skills of highly accomplished, experienced leaders who want to apply their talents to solve significant social problems, including those affecting health and welfare, children and the environment, and focus on community and public service in the next phase of their careers.”

As an ALI Fellow in 2012 – the first ever Australian candidate to be invited – Cynthia found daily opportunities to draw upon many sources of mentorship and inspiration from both the Harvard professors attached to the program, as well as her ALI Fellows alike. As she reflects, “I felt completely at home. For me, Harvard was all about authentic academic pursuit. Within the ALI program itself, there were a wide range of people with major global accomplishments coming together to find meaning and apply insights from their achievements and moving to the next step of their lives.”

Holland in the ALI Fellowship

Cynthia found the mentorship of Prof. Rosabeth Moss Kanter, Prof. Charles Ogletree Jr., and Prof. Fernando M. Reimers truly inspirational within their respective fields of knowledge.

Time taken with Joe Blatt (Senior Lecturer on Education, Faculty Director ­– Technology, Innovation, and Education; Sesame Street consultant) and his student cohort also invaluably progressed the digital elements of the MKWF program and the pedagogy behind content delivery.

John Kendzior, Director of Candidacy in the ALI program, became a pivotal cornerstone of the ALI mission, developing an empowering, engaged community filled with common values of trust, honesty, integrity, commitment and true academic grit. “John’s profound guidance and insightful acumen all helped move the MKWF program to a next stage”, says Cynthia.

So where to now with the MKWF program in an ever-changing technological world?

Some of the major challenges ahead surround the process of ensuring careful implementation and ‘treatment fidelity’ in program delivery so that the interventions continue to be delivered sensitively with later study populations.

The important challenge of building reliable and effective supportive interventions for patient–families during terminal illness still remains. Building the ‘digital legacy’ elements in an increasingly universal digital world is a crucial goal and enduring responsibility.

Cynthia Holland with children

 

Recent milestones for the program have been achieved in the publication of My Kite Will Fly (MKWF): Improving Communication and Understanding in Young Children When a Mother is Diagnosed with Life-Threatening Gynaecological Cancer in The Journal of Palliative Medicine, along with a 25-year clinical review paper documenting the evolution of the MKWF program, its clinical outcomes and future directions (in press).

The Harvard ethos of veritas has proven to be an important personal and educational leitmotif across so much of the research and development that has informed the evolution of MKWF over the past 25 years. As Cynthia suggests, “With over 3000 cases behind me and 28 years of work in Oncology, helping parents and children reach a fulfilling adulthood is my enduring goal. Participation in the Harvard ALI program equipped me with the time and opportunity to pursue ultimate discovery and allowed me to reach for the stars.”

It is with this long intellectual association with Harvard in mind that Cynthia continues to strive to move the MKWF program forward to ensure that its ultimate legacy will be an enduring treatment model at every comprehensive cancer treatment centre where children face grief and distress following a parent’s diagnosis of a life threatening gynecological cancer. 

Cynthia Holland, Melbourne, Australia
June 2018
 

Cynthia gratefully acknowledges the assistance of journalist Marcus D. Niski in compiling this profile of the My Kite Will Fly (MKWF) program and details of her association with Harvard University. Marcus has contributed significantly to written communication about the program since 2007, including publication of the recent MKWF Journal of Palliative Medicine paper, https://doi.org/10.1089/jpm.2017.0058. Marcus’s website: www.thewritingpractice.com