1. ‘Shadow grief: how might music therapy assist bereavement following miscarriage or stillbirth?’ Margaret Broad B.A. MSc

2. With heartfelt thanks to the participants who made this study possible, for their openness in sharing their personal narratives and for their interest in music therapy. It was a privilege to enter their journey through the valley of the shadow and to learn from them about their role in supporting bereaved parents.

3. Conception

4. ‘There are words to describe all kinds of bereaved people – widow, widowers, orphans – but none for a parent who has lost a child: it’s a fate too terrible for even language to contemplate.’ (Aslam, 2004)

5. Common grief Stages of grief – numbness – yearning – disorganisation and despair – reorganisation (Bowlby, 2005; Worden, 1991; Parkes, 1996; Kűbler-Ross, 2009) Manifestations of grief – loss of appetite – sleeplessness – anger especially towards health professionals – guilt, self blame (Penson, 1990) sadness, despair, confusion, low self esteem (Staudacher, 1988)

6. Specific issues Grief for an unlived life (Miscarriage Association, 2009) ‘A stillborn is someone who did not exist, a nonperson with no name. It is an empty tragedy and a painful emptiness difficult to talk about...’ (Hockey 1990, pp.40-1)

7. ‘Unable to find legitimate avenues of expression, the need to remember becomes paramount. The mothers believe that if they do not remember, no one else will; the memory of their child must be kept alive at all costs.’ (Peppers and Knapp 1980, p.49)

8. Miscarriage - pregnancy loss < 24 weeks gestation (NHS, 2009) Stillbirth - pregnancy loss > 24 weeks gestation, UK legal age of viability Neonatal death - birth to 28 days (SANDS, 2009)

9. Support Organisations ARC (ARC, 2009) termination of pregnancy Babyloss (Babyloss, 2010) October 15 International Pregnancy and Infant Loss Awareness Day International Stillbirth Alliance (2009) research to raise awareness of the issues surrounding infant death Tamba BSG (TAMBA BSG, 2009) loss of a child from a multiple pregnancy Miscarriage Association (Leroy, 1988) founded by bereaved mothers 1982 Stillbirth and Neonatal Death Society (SANDS, 2010 ) reduction of age of viability from 28 to 24 weeks

10. Training for health professionals (Riches and Dawson, 2000; Schott, Henley and Kohner, 2007; Hindmarch, 1993; Scottish Office Department of Health, 1996) SANDS guidelines (Schott, Henley and Kohner, 2007) empathy clear communication good listening skills sensitivity to individual needs and cultural differences respect and acknowledgement of parental loss Qualities of music therapist (Bunt and Hoskyns, 2002) tolerance sensitivity empathy flexibility ability to listen and communicate intuitively

11. ‘Stillbirths - a forgotten problem’ (The Independent, 14 April 2011) Global: – 3.2 million stillbirths per annum – 8700 stillbirths per day (The Lancet, 14 April 2011) UK: – 1/4 pregnancies results in miscarriage (NHS, 2009) – 3.5 stillbirths per 1000 births (ranks 33rd globally) – 17 stillbirth/neonatal deaths per day (Why17, 2010) > 70% of stillbirths occur in women with no significant medical condition Stillbirth 10x more common than cot death (The Independent 14 April 2011)

12. Music Therapy intervention in maternity care (Browning 2000; Allison, 1991 ; Chang and Chen, 2004 ; Kaiming, Shuping and Xiaofen,1997) bereavement: – death of spouse (Smeijsters, 1999) parent (Turry, 2005) terminally ill child (Lindenfelser, Grocke and McFerran, 2008) – expression of feeling states (O’Callaghan, 1996 ; Hudson Smith, 1991) – reminiscence (Bright, 2007) – grief-related support groups (Krout, 2005) palliative care (Bright, 2007 ; Aldridge, 2003) ‘The Tonic’ APMT/BSMT News (Bruce 2009)

13. Gestation

14. Research aims How might music therapy assist bereaved parents who have experienced loss through miscarriage or stillbirth? Which musical therapeutic strategies might be appropriate to assist the grief process of this population? At which stage of the grief process might music therapy be an appropriate intervention?

15. Methodology phenomenological-orientated approach – Examine life experience purposive sampling – befrienders recruited from a bereavement support organisation (themselves bereaved mothers) – n=4 ethical considerations – participant re-traumatisation (counselling sheet) – researcher vulnerability (personal therapy) semi-structured interviews – video footage (Nordoff-Robbins, 2010 ; Harpkit, 2010) – ‘Every Note Counts’ (Simpson, 2007) content analysis – categories and sub categories – coded manually trustworthiness and reflexivity – Peer debriefing – reflexive journal – verification of accuracy

16. Birth

17. Data analysis : categories

18. Key findings context of the support organisation nature of the need for support factors which may inhibit support how support is currently facilitated within the organisation

19. role of music within current support system befriender perceptions of the therapeutic value of music in bereavement befriender receptivity to music therapy potential strategies for implementing music therapy stages of grief when music therapy might be an appropriate intervention

20. Organisational context Open door policy Befriending Meetings Attendees Patterns of attendance

21. Parental need for support Need for expression of feeling states – “It’s quite amazing the full spectrum of emotions that can be around at a meeting. But, yes, a lot of tears and a lot of emotional depth and they’re difficult. They’re very draining”. Need for social inclusion – “ I think they feel supported because a lot of people, up until they come along, feel that it’s just them. They are on their own”. Need for coping strategies – “I lived for that meeting every month. It was like a pressure cooker building up and then you had your meeting and you got a chance to talk and you know, you sort of simmered down again for another month”. Intrinsic need for remembrance – “I think at the beginning I was worried I would forget. That was a fear. I think a lot of people have the fear of forgetting. But I know now, that you don’t forget”.

22. memory boxes scan photographs / photos of the dead baby scrapbooks certificates of birth / hospital appointment cards (Schott, Henley and Kohner 2007) ‘Wave of Light’ services naming ceremony (Jenkins and Merry 2005) balloon releases ( Babyloss 2010) web pages to post on-line messages expressing loss – ‘Forget-me-not Meadow’ / ‘Lights of Love Tree ’ (Miscarriage Association 2010) body art / tattoos Creating memories

23. Bereavement lifeline (Scottish Office Department of Health 1996) Gauging level of support Befriender supervision and support needs Facilitation of support

24. Support inhibitors Bereaved parents may experience: – dilemma in acknowledging bereavement – fear of losing emotional control – denial of subsequent pregnancy/ unresolved grief in subsequent pregnancy Gender differences in grieving Cultural differences in grieving Lack of social awareness about acknowledgement of bereavement Family restraints on expression of grief Lack of understanding by health professionals

25. Music Activities – Music valued in remembrance service – Support product CD of remembrance service – Song-writing by bereaved parent Genre Music for expression of feeling states Conscious / unconscious use of music Background music in support meetings

26. Potential for Music Therapy Befriender perspective towards music therapy lack of awareness about availability of music therapy “If there was another channel in which they could have said – ‘Look, there’s some music therapy open to you here’ - I absolutely would have taken it but there wasn’t”. awareness of music therapy as concept receptivity to music therapy to assist bereaved parents

27. Befriender suggestions for Music Therapy as a non-verbal intervention for grief to facilitate communication to match intensity of grief for empathic attunement to interact with current support services for referral by health professionals to music therapy introductory DVD about music therapy for bereaved parents introductory music therapy sessions for bereaved parents group / individual sessions to facilitate expression of feeling states – drumming as outlet for anger for support at different stages of grief

28. Feeling States Stage of griefFeeling statePotential for Music Therapy Newly bereaved Numbness Shock Self absorption with grief For comfort To trigger emotion To offer sensitive support without words Subsequent pregnancyAnxious preoccupation Stress Guilt For relaxation To induce calmness Later stages of griefLaughter Comedy Joy To support parents trying to conceive another baby Shadow griefTo open a channel for grieving

29. Future development

30. consider : – the effects of specific music therapeutic strategies on the mourning process of this population – their un/conscious mourning processes support : – gender differences in grieving – grandparents’ grief – bereaved mothers with PTSD (Hughes and Cockburn 2007) – supervision and support needs of befrienders collaborative working with health professionals to assist bereaved parents policy changes to include music therapy

31. References Aldridge, D. (2003). Music therapy references relating to cancer and palliative care. British Journal of Music Therapy, 17(1), pp.17-25. Allison, D. (1991). Music therapy at childbirth. In Bruscia, K.E. ed. Case studies in music therapy. Gilsum: Barcelona Publishers, pp. 529- 546. Ansdell, G. and Pavlicevic, M. (2001). Beginning research in the arts therapies: a practical guide. London: Jessica Kingsley Publishers. ARC. (2009). Antenatal Results and Choices. Retrieved from http://www.arc-uk.org. http://www.arc-uk.org Aslam, N. (2004). Maps for lost lovers. London: Faber and Faber Ltd. Babyloss. (2010). Baby Loss Awareness Campaign. Retrieved from http://www.babyloss-awareness.org/events.htm. http://www.babyloss-awareness.org/events.htm Bright, R. (2007). Music therapy, death and grief. Nordic Journal of Music Therapy 16(2) pp. 179-80. Retrieved from http://web.ebscohost.com/MEDLINE. http://web.ebscohost.com/MEDLINE Browning, C.A. (2000). Using music during childbirth. Birth:issues in perinatal care 27(4), December pp. 272-6.. Retrieved from http://web.ebscohost.com/CINAHL. http://web.ebscohost.com/CINAHL Bruce, A. (Ed.) ( 2009, January). The Tonic: members questions answered. BSMT News., p.10. London: Association of Professional Music Therapists British Society for Music Therapy. Bunt, L. and Hoskyns, S. (2002). The handbook of music therapy. Hove: Brunner-Routledge. Chang, S. and Chen, C. 2004. The application of music therapy in maternity nursing. Journal of Nursing 51(5) Oct, pp 61-6. Retrieved from http://web.ebscohost.com/CINAHL. http://web.ebscohost.com/CINAHL FoetusDM. (2010). Retrieved from http://www.dailymail.co.uk/health/article-510975/Abortion-time-limit-reduced-foetuses-feel-pain- 24-weeks-MPs-told.html.http://www.dailymail.co.uk/health/article-510975/Abortion-time-limit-reduced-foetuses-feel-pain- 24-weeks-MPs-told.html Harpkit. Reverie Harp Story 1. (2010). Retrieved from http://www.youtube.com/watch?v=ejQLvtz0u_U. http://www.youtube.com/watch?v=ejQLvtz0u_U Hockey, J.L. 1990. Experiences of death: an anthropological account. Edinburgh: Edinburgh University Press. Hudson Smith, G. (1991). The song-writing process: a woman’s struggle against depression and suicide. In: Bruscia, K. ed. Case studies in music therapy. Gilsum: Barcelona Publishers, pp.479-496. International Stilbirth Alliance. (2009). Research. Retrieved from http://www.stillbirthalliance.org.

32. Jenkins, C. and Merry, J. (2005). Relative grief. London: Jessica Kingsley Publishers. Kaiming, Z., Shuping, D.and Xiaofen, Y. (1997). Use of music in nursing care of induced abortion. Shanxi Nursing Journal 11(4) Aug, pp.159-60. Retrieved from http://web.ebscohost.com/CINAHL. http://web.ebscohost.com/CINAHL Krout, R.E. (2005). Applications of music therapist-composed songs in creating participant connections and facilitating goals and rituals during one-time bereavement support groups and programs. Music Therapy Perspectives. [23 (2), pp. 118-128. Retrieved from http://web.ebscohost.com/PsycINFO. http://web.ebscohost.com/PsycINFO Kűbler-Ross, E. (2009). On death and dying. 4th ed. Abingdon: Routledge. Leroy, M. (1988). Miscarriage. London: Macdonald Optima. Lindenfelser, K.J., Grocke, D. and McFerran, K. (2008). Bereaved parents’ experiences of music therapy with their terminally ill child. Journal of Music Therapy, XLV (3), pp. 330-348. Miscarriage Association. (2009). Acknowledging pregnancy loss: how you might feel. Retrieved from http://www.miscarriageassociation.org.uk/ma2006/information/leaflets.htm. http://www.miscarriageassociation.org.uk/ma2006/information/leaflets.htm Miscarriage Association. 2010. Support: remembering/marking the loss.. Retrieved from http://www.miscarriageassociation.org.uk/ma2006/support/remembering.htm. http://www.miscarriageassociation.org.uk/ma2006/support/remembering.htm NHS. (2009). Choices: your health your choices. Retrieved from http://www.nhs.uk/conditions/miscarriage/ Pages/Introduction.http://www.nhs.uk/conditions/miscarriage/ Nordoff-Robbins. (2010). An Introduction. London: Nordoff-Robbins O’Callaghan, C. (2004). Music Therapy’s Relevance in a Cancer Hospital Researched Through a Constructivist Lens. Journal of Music Therapy. XLI(2), pp. 151-185. Parkes, C.M. (1996). Bereavement: studies of grief in adult life. 3 rd ed. London: Routledge. Penson, J. (1990). Bereavement: a guide for nurses. London: Chapman and Hall. Peppers, L.G. & Knapp, R.J. (1980). Motherhood and mourning: perinatal death. New York: Praeger Publishers. SANDS. (2009). Promoting research. Retrieved from Retrieved from http://www.uk-sands.org/Research.html.http://www.uk-sands.org/Research.html.

33. SANDS. (2010). Our history. Retrieved from http://www.uk-sands.org/About-Sands/History.html. http://www.uk-sands.org/About-Sands/History.html. Schott, J., Henley, A. and Kohner, N. (2007). Pregnancy, loss and the death of a baby: guidelines for professionals. 3 rd ed. Shepperton on Thames: Bosun Press. Scottish Office Department of Health. (1996). The management of early pregnancy loss: a statement of good practice. Report of the National Medical Advisory Committee. London: HMSO. Simpson, F. (2000). Speaking with clients: perspectives from creative music therapy. British Journal of Music Therapy, 14(2), pp.83-92. Smeijsters, H. (1999). Music therapy helping to work through grief and finding a personal identity. Journal of Music Therapy 36 (3), pp. 222-252. Retrieved from http://web.ebscohost.com/PsycINFO. http://web.ebscohost.com/PsycINFO Staudacher, C. (1988). Beyond grief: a guide for recovering from the death of a loved one. London: Souvenir Press (E & A) Ltd. Stillbirth – a forgotten problem. (2011, April14). The Independent.p. 18 Stillbirth. (2011, 14 April). The Lancet. Retrieved from http://download.thelancet.com/flatcontentassets/series/stillbirths.pdf. TAMBA. (2009). Bereavement Support Group. Retrieved from http://www.tamba-bsg.org.uk. http://www.tamba-bsg.org.uk. Turry, A. (2005). Music psychotherapy and community music therapy: questions and considerations. Voices: A World Forum for Music Therapy 5(1) March 1.. Retrieved from http://www.voices.no/mainissues/mi40005000171.html.http://www.voices.no/mainissues/mi40005000171.html What is Why17? Retrieved from http://www.why17.org/About-the-Campaign.html. http://www.why17.org/About-the-Campaign.html Worden, J.W. (1991). Grief counselling and grief therapy: a handbook for the mental health practitioner. 2 nd ed. London: Routledge.