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Music Therapy in Children’s Hospices. Jessie’s Fund in Action

br2005_55Pavlicevic, Mercedes (Ed). (2005). Music Therapy in Children’s Hospices. Jessie’s Fund in Action. London: Jessica Kingsley Publishers. 188 pages & reference to CD which may be purchased separately.

Music Therapy in Children’s Hospices – Jessie’s Fund in Action is comprised of 11 chapters with a forward by Victoria Wood, a well known British comedian, musician, actress & writer; an introduction by Mercedes Pavlicevic, the Editor of this book; a conclusive chapter written by an adolescent client describing his experiences of his music therapy program; an index of CD extracts and an advertisement for purchasing the accompanying CD (188 pages in total).

This book provides a valuable contribution to the expanding area surrounding music therapy and palliative care with a particular focus on children. Part of this contribution lies in the way this book was created, that is, how the idea of “Jessie’s Fund” first came about. This book celebrates the “birth” of music therapy services for children in hospices in the United Kingdom (UK), or as described by the Editor in the opening of the introduction – “a celebration of Jessie’s Fund in action” (p. 18).

Jessie, the daughter of Leslie and Alan and sister to Hannah, was diagnosed with an aggressive brain stem tumour at nine and a half years of age. Her prognosis was poor and despite courses of radiotherapy, homeopathy and nutritional therapy, she passed away less than 6 months after her diagnosis. Jessie’s mother, Leslie is the author of Chapter 1 entitled “When I grow up…” where she describes the story of Jessie’s illness and its impact upon the family. Both of Jessie’s parents are professional musicians and before Jessie’s death, a campaign to raise money for Jessie’s treatment was launched. This was initially supported by colleagues of Leslie and Alan and called “Jessie’s Fund – named by Jessie herself.

During the final months of Jessie’s life she attended a children’s hospice in Yorkshire, England called Martin House. It was here that the idea of creating a music therapy service for children receiving palliative care was first introduced. The fund began by purchasing an arrangement of quality musical instruments and with the assistance and consultation of Leslie Bunt, created a series of workshops whose aim was to teach hospice staff in exploring ways of using music therapeutically with children in their hospice settings. Following the establishment of a music therapy position at Martin House, another position was soon established at Acorns, in Birmingham in 1996 and so began the expansion of music therapy services in paediatric palliative care throughout the UK. By 1999 eight music therapists had been appointed to children’s hospices through Jessie’s Fund. By the time of this book’s publication (2005), approximately 20 of the music therapists working in settings established by Jessie’s Fund had been invited to write of their experiences in working with these children. The success of Jessie’s Fund has provided for such services to exist in supporting the children and their families in dealing with their terminal illness.

As the initial paragraphs of this review do indeed tell a story of the origins of Jessie’s Fund, so to does each chapter tell a story of the experiences and music making of children, music therapists and the children’s families. Most chapters are written in a descriptive narrative style with an emphasis on the way music was created and expressed with each child. It is this style of writing that allows the reader to follow through each chapter so easily and effortlessly. While the chapters of this book often cite and refer to published studies or chapters on paediatric palliative care, it is not the intention of this collection to explore the refereed literature on this topic. Instead it is a collection of “windows into the world of paediatric palliative care” from the perceptions of all involved in each therapeutic process and relationship, that is, the child, the music therapist, the parents, the siblings, friends and staff at each hospice; a kaleidoscope of experiences, reflections of the day to day work of a music therapist in a children’s hospice.

Chapter 2 by Cathy Ibberson introduces to the reader the ways in which a music therapy service was first provided to the children on Martin House and provides an overview of some of the issues confronted by a music therapist in creating such services. As in all of the proceeding chapters, each author sets out to provide the reader with a picture or image of the music therapy session conducted. It is these components of each chapter that clearly assist the reader in being able to follow and understand the ways in which music was created between client(s) and therapist and the therapeutic bond of trust and openness that followed. From descriptions of music therapy within a medical setting (Chapter 3); groups for bereaved siblings (Chapter 4) to sharing brief encounters in music therapy (Chapter 5) and the use of music therapy in supporting adolescents with muscular dystrophy (Chapter 6), each author includes several case vignettes which describe the precious moments where a child is able to engage in a creative process that promotes their own unique being. As described by one child’s mother of her experience of a single music therapy session (p. 87).

That was one good moment – the absolute extreme opposite of the horrendous memory of his last breaths. If I didn’t have that good and precious moment to counter all of the horrific moments, I don’t know how I’d cope.

Chapters 7 to 9 provide an overview of other “windows” into the world of a music therapist in pediatric hospice care by focusing on various types of settings including the open music therapy group session (Chapter 7); the challenges of working with both children and adults in a hospice setting (Chapter 8) and the importance of thanksgiving and reminiscence sessions (Chapter 9).

One of the final chapters (Chapter 10) presents to the reader the story of the establishment of a project to provide music therapy services in an outreach setting, that is, from beyond the hospice to the home environment. Such a project presents itself as an area of potential growth in the expansion of music therapy services and illustrates the way in which music therapy is able to extend itself in service provision beyond the walls of hospice care. Chapter 11 is written in the style of a children’s story and focuses on the importance of having supportive colleagues in our profession. The writing style of this chapter is inviting and evocative as it encourages the reader to enter the world of music therapy in this creative way.

The conclusion of this book is written by Chris, a nineteen-year-old man who speaks of his experiences as a client of music therapy. Written together with his music therapist, Chris retells his own story, the challenges faced throughout his illness and the importance of music therapy in his life journey. This reviewer believes in the importance and relevance of our client’s experiences of therapy – not just documented through us as their therapists in our words but through their words, their stories.

Each chapter in this book touches on and reveals the stories of these children and adolescents (and at times their families). This main theme of story telling using a narrative style appears to reflect some of the current understandings of the models of grief and loss theories reported in the literature. While there is insufficient space to explore the similarities between these models and the themes contained in this book, the reviewer found it interesting to note that all contributors wrote of the importance of the role of music therapy in creating “bonds” either between child and therapist, child and family, child to child or even internal “bonds” within the child himself. One aspect of “continuing bonds” as reported by Davies (2004) places emphasis upon parents being able to hold on to their relationship with their child rather than letting go. As documented in the music therapy literature in paediatric palliative care (Aasgard, 2005; Daveson & Kennelly, 2000; Daveson, 2001; Fagen-Schulman, 1982) music therapy is able to provide opportunities to create, maintain and extend these bonds through story telling in the forms of music making – the ways in which we listen, sing, write, play, move and relax to music.

Many chapters in this book highlight the importance of the creation of music (compositions) or musical memories which are left behind for families to treasure and hold once their child has passed away. These memories, stories and “windows of music making wonder” are well described in a consistent, flowing style of writing which will not only appeal to music therapists working with this population but also to other health care workers involved in children’s hospices.

It highlights to this reviewer, the significance of storytelling in our clinical work and the richness and depth of such description which is vital to the expansion and consolidation of music therapy theory, research and practice. The final comments made in the conclusive chapter by Chris, a nineteen year old client of music therapy, seems to perfectly describe the unique relationship between client and music therapist– the special qualities that music possesses which enable such a relationship to nurture and grow:

We understand one another. When I say ‘grey’, normally someone assumes either ‘black’ or ‘white’; not Jane, she…. thinks ‘grey’. (p. 177).

References:

Aasgard, T. (2005). Assisting Children with Malignant Blood Disease to Create and Perform Their Own Songs. In F, Baker & T. Wigram (Eds). Songwriting Methods, Techniques and Clinical Applications for Music Therapy Clinicians, Educators and Students. London: Jessica Kingsley Publications.

Daveson, B. (2001). Music Therapy and Childhood Cancer: Goals, Methods, Patient Choice and Control During Diagnosis, Intensive Treatment, Transplant and Palliative Care. Music Therapy Perspectives, 19, 114-120.

Daveson, B & Kennelly. J. (2000). Music Therapy in Palliative Care for Hospitalized Children and Adolescents. Journal of Palliative Care, 16 (1), 35-38.

Davies, R. (2004). New Understandings of Parental Grief: Literature Review. Journal of Advanced Nursing, 46 (5), 506 – 513.

Fagen-Schulman, T. (1982). Music Therapy in the Treatment of Anxiety and Fear in Terminal Paediatric Patients. Music Therapy, 13-23.

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