volume 1 issue 1
T: 029 2053 2245 E: mandy.brimble@tyhafan.org
insight - ty hafan
inside this issue: insight - t yˆ hafan
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the spiritual nature of the child
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join the debate duchenne muscular dystrophy (DMD) 4-5 t yˆ hafan dads’ group 6-9 success at rcn congress for t yˆ hafan 10 using M technique® to manage symptoms: a case study 11
15 years of being there
sharing best practice in paediatric palliative care
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sharing best practice in paediatric palliative care. volume 1 issue 1
welcome to the first edition of
insight - t yˆ hafan The aim of this journal is to provide a platform for sharing experience, evidence and ideas on best practice in paediatric palliative care. Whilst authorship of articles in this issue is confined to those working at Tˆy Hafan I hope that colleagues from all disciplines who work in paediatric palliative care will be encouraged to contribute to this publication. Guidelines for submission of articles can be found on the back page.
I took up this challenging, newly created, post in November 2012 following a nine year period of working as a Lecturer in Children’s Nursing for the School of Nursing and Midwifery Studies at Cardiff University. Prior to that I worked as a Health Visitor and Children’s Nurse in general medicine, day surgery and outpatient services. In addition to my Nursing Diploma and BSc in Community Health Studies, I am a registered nurse prescriber, hold a Post Graduate Certificate in Education and a Masters
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in Education. I retain my strong links with Cardiff University as, on leaving, I was appointed to the role of Honorary Clinical Tutor. In addition I am maintaining my university based academic skills by continuing as an external examiner for the Florence Nightingale School of Nursing at Kings College, London. This new exciting and innovative role requires me, to provide leadership in education, professional development and research; alongside promoting Tˆy Hafan as a provider of high quality education of children’s palliative care in Wales. I hope that you will share your experiences, ideas and thoughts with us.
the spiritual nature of the child Cath Thompson, Head of Care Services Recently a mother shared with me the pain she feels every time she looks at her child. “I don’t know what she understands” she said, “so what does her life mean?”
Mandy Brimble, Editor, Lead Practitioner for Education & Research, Tyˆ Hafan
My role as Lead Practitioner for Education and Research at Tˆy Hafan has been in existence for only a short time and I see the launch of this new journal as a fundamental step sharing best practice in the care of life limited and life threatened children, young people and their families. For those of you who don’t know me, I have prepared a brief outline of my career below.
T: 029 2053 2245 E: mandy.brimble@tyhafan.org
Reflecting on this encounter later in the day I considered how easy it is to overlook the obvious when seeking to answer the searching questions of parents. So what did this child’s life mean to herself and her family? The existential nature of such a question leads to an examination of the spiritual nature of the individual.
“This new exciting and innovative role requires me to provide leadership in education,” professional development and research”
Narayanasamy1 insists that spirituality is the essence of our being and one that gives meaning and purpose to our very existence, the lived and real experience for many. McSherry and Smith2 argue that if we subscribe to the belief that there is such a thing as spirituality then the logical extension is that we all possess spiritual needs. Spiritual needs have been identified as including meaning and purpose in our lives, love, harmonious relationships and connectedness, forgiveness, hope and strength, trust, personal beliefs and values and spiritual practices 3 4 5 6 . Children are spiritual beings and spirituality is an integral part of their lives. However, it is often a part of their life that is invisible to the adult world and not always valued or nurtured7 8 .
If you do wish to submit articles for future editions please email me on mandy.brimble@tyhafan.org
How do we see the spiritual nature of children? Hyde9 argues that children reveal their spirituality in the ordinary events and activities of childhood; playing, exploring, asking questions, making sense of an event and empathising with others.
But what if the child cannot fully engage with the activities of childhood? Spiritual needs do not require thought or speech to be expressed. Research has demonstrated that patients with dementia still have spiritual needs that can be met regardless of how far their illness has progressed10. If as Frankl11 espouses spirituality is the essence of our humanity, then understanding the humanness of one another would enable us to be attuned to the spiritual needs of another. Therefore, answering a mother’s question does not become an attempt to define her child’s cognitive or physical abilities but a recognition of her child as a spiritual being, just like the rest of us trying to make sense of the world around us, to feel a part of something, to love and to feel close to others. So, my answer to this mother’s question was, ‘Your child understands enough to know that each day is filled with experiences of the world around her, both good and bad; she understands enough to feel pain and peace, contentment and comfort. But most importantly she understands enough to know she loves and is loved.’ Do you have some experience of this aspect of palliative care? Please tell us about it. Email mandy.brimble@tyhafan.org
references 1. N arayanasamy, A. (2010) ‘Recognising spiritual needs’ in W. McSherry and L. Ross (eds) Spiritual Assessment in Healthcare Practice. Keswick: M&K Publishing pp37- 55. 2. McSherry, W. and Smith J. (2012) ‘Spiritual Care’ in W. McSherry, R. McSherry, and R. Watson (eds) Care in Nursing; Principles, values and skills. Oxford: Oxford University Press pp.117- 131. 3. Harrison, J. and Burnard, P. (1993) Spirituality and nursing practice. Aldershot: Avebury. 4. Narayanasamy, A. (2001) Spiritual Care: A Practical Guide for Nurses and Healthcare Practitioners. London: Quay Books. 5. Narayanasamy, A. (2006) Spiritual Care and Transcultural Care Research. London: Quay Books. 6. McSherry, W. (2007) The Meaning of Spirituality and Spiritual Care within Nursing and Health Care Practice. London: Quay Books 7. Adams, K., Hyde, B. and Woolley, R. (2008) The Spiritual Dimension of Childhood. London: Jessica Kingsley Publishers. 8. Hay, D. and Nye, R. (2006) The Spirit of the Child (revised edition). London: Jessica Kingsley Publishers. 9. Hyde, B. (2008) Children and Spirituality. Searching for meaning and Connectedness. London: Jessica Kingsley Publications. 10. D oherty, D. (2006) Spirituality and dementia. Spirituality and Health International, 7, 203 – 10. 11. Frankl, V. (1984) Man’s search for meaning (3rd ed.) New York: Washington Square Press
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duchenne muscular dystrophy (DMD): should newborn screening be reintroduced? Mandy Brimble, Editor, Lead Practitioner for Education and Research, Tyˆ Hafan Screening of any type can be controversial, usually because there is a ‘trade-off’ of sensitivity and specificity. In relation to child development, for instance, some countries promote it universally whilst others are more selective1. This is also true of newborn screening. Opinion is split on the value of newborn screening2 for life-limiting or life threatening conditions where no curative treatment is currently available. In relation to DMD much of this debate relates to the Wilson-Jungner guidelines 3 and the interpretation of whether this condition meets the following criteria:‘Treatment at an early stage should be of more benefit than at a later stage’. One could argue that this appears to be true of DMD, where there is evidence to suggest the benefit of steroid treatment in prolonging
“Treatment at an early stage should be of more benefit than at a later stage”
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ambulation 4,5. Furthermore, early detection may influence reproductive choices. However, there is also an ethical counterargument which does not accept the altruistic position on which early detection for others is based4. Newborn screening for DMD was introduced in Wales in 1990 and withdrawn in December 2011, just as UK wide action and support groups were debating whether the test should be introduced nationally7. Worldwide, no country currently screens for DMD at birth on a national level. Prior to the withdrawal of the test in Wales the Welsh Government stated that the USA Centre for Disease Control had been instrumental in forcing the decision as they had withdrawn the quality assurance mechanisms relied upon to ensure reliability of the test8. It is somewhat ironic that a year later American researchers continue to publish literature advocating the introduction of the test in the USA9.
In October 2011 the UK National Screening Committee10,11 provided a range of reasons why newborn screening for DMD is not recommended: 1. T here are concerns about the reliability of the current test. 2. It feels that there is uncertainty about the optimum age at which steroid treatment should be initiated. 3. T here is insufficient evidence that identification at birth influences long term outcomes. 4. T here is conflicting evidence relating to reproductive decision making. No significant changes were made when this policy was reviewed in May 2012. A further review is not due until 2015/16 unless significant new evidence emerges.
T: 029 2053 2245 E: mandy.brimble@tyhafan.org
This piece has already referred to evidence which goes some way to addressing points 2-4. In relation to point 1, concerns here surround false positives due to creatine kinase (CK), the marker used in identifying children affected by DMD, being elevated in many unaffected children following the birthing process. However, in 2012 the findings of an American study12 suggested that a 2 tier testing system would overcome these difficulties. Parents strongly advocate the reintroduction of the test in Wales13, as do some professionals6. Presumably, as the UK National Screening Committee has an advisory role only in Wales, reintroduction would be a possibility if the test is introduced in the USA and the necessary quality assurance mechanisms re-established.
Should newborn screening for DMD be reintroduced? Please e-mail your response together with any comments you would like to make or accounts of your experience to mandy. brimble@tyhafan.org All responses will be annonomised and reported in the next issue.
Parents strongly advocate the reintroduction of the test in Wales
references 1. B ellman, M, et al. (2013) Developmental assessment of children. British Medical Journal, 346:e8687. 2. B otkin, JR et al (2006) Newborn Screening Technology:Proceed with Caution. Pediatrics, 117, p1793-1799. 3. W ilson, JMG and Jungner, G (1968) Principles and Practice of Screening for Disease. Geneva. World Health Organisation. 4. R oss, LF (2006) Screening for conditions that do not meet the Wilson and Jungner criteria: the case of Duchenne muscular dystrophy. American Journal of Medical Genetics, 140, p914-922. 5. M oxley 3rd, RT and Pandya, S (2011) Weekend high-dosage prednisone: a new option for treatment of Duchenne muscular dystrophy. Neurology, 77, p416-417. 6. M oat, SJ, et al. (2013) Newborn bloodspot screening for Duchenne muscular dystrophy: 21 years experience in Wales (UK). European
Journal of Human Genetics advance online publication, 23 January 2013; doi:10.1038/ejhg.2012.301. 7. M uscular Dystrophy Campaign (20122) Meeting discusses newborn screening for Duchenne muscular dystrophy. Available online at http://www. muscular-dystrophy.org/research/ news/3536_meeting_discusses_ newborn_screening_for_duchenne_ muscular_dystrophy. Accessed 26.2.13. 8. P ublic Health Wales (2011) Newborn Screening for Duchenne Muscular Dystrophy to stop in Wales: Information prepared by the All Wales Newborn Bloodspot Screening Projecthttp:// www.wales.nhs.uk/sitesplus/ documents/863/Cessation%20for%20 Newborn%20Duchenne%20Screening. pdfAccessed 26.2.13. 9. A non (2012) Newborn Screening for Duchenne Muscular Dystrophy gains support. American Journal of Medical Genetics. 158A, 12, p viii-ix.
10. U K National Screening Committee (2011) The UK NSC policy on Duchenne muscular dystrophy screening in newborns. Available online at http://www.screening.nhs.uk/ musculardystrophy. Accessed 26.2.13. 11. U K National Screening Committee (2011) Newborn Screening for Duchenne Muscular Dystrophy: External review against programme appraisal criteria for the UK National Screening Committee (UK NSC). Version 4. London. Bazian Limited. 12. M endell, JR, et al. (2012) EvidenceBased Path to Newborn Screening for Duchenne Muscular Dystrophy. Annals of Neurology, 71, p304-313 13. B BC News (2012) Reinstate Duchenne muscular dystrophy test, say parents. Available online athttp://www.bbc. co.uk/news/uk-wales-16555292. Accessed 26.2.13
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sharing best practice in paediatric palliative care. volume 1 issue 1
T: 029 2053 2245 E: mandy.brimble@tyhafan.org
tyˆ hafan dads’ group
“Enhanced the level of dialogue between fathers and male staff”
Paul Fisher, Activity Worker and Mandy Brimble, Lead Practitioner for Education and Research Support is widely regarded as an important factor in helping children’s carers cope during difficult periods in their palliative care journey1. The need to recognise and accommodate the distinct and separate needs of fathers to children with long term conditions or disabilities is also well documented2,3,4. This naturally extends to paediatric palliative care where differing views and needs of couples has also been reported5. This article describes a group which aims to provide psychosocial support to fathers of life-limited and life threatened children and analyses literature relevant to this activity. The group was originally instigated by two male play workers at Tˆy Hafan and, due to staffing changes, is now facilitated by a play worker and a care team member. The long term aim is that primary responsibility for coordinating the group will be taken up by the fathers themselves. The story so far The group was formed at the end of 2006 in response to a comment made by a father that “everything seems to be catered for and around mums’’ The initial approach was an informal invitation to play five-a-side football at the hospice, with a view to using this as an impetus for further social events. The organisers of the group suggested that, if successful, the group may consider entering teams for an inaugural charity five a side tournament, due to take place early the following year.
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Initial attendance of 10-13 fathers per fortnight was promising and two teams, comprising fathers and staff, were entered into the tournament. Feedback from participants was very positive and the introduction of monthly meetings at the hospice followed. In particular, the benefits of physical exercise and the feeling of wellbeing gained from this.6 The organisers were keen to maintain the supportive essence of the group and sought opinions on a) perceived benefits of the group and b) other possible social activities. The return rate for the postal questionnaire was low at 10%. Nevertheless responses came from across the catchment area of the service, i.e. mid, south and west Wales. Reponses to why the fathers wished to become involved in the group primarily related to commonality of their situation and being around others who understood, overcoming isolation, having fun and the opportunity to put their situation aside for a short time. Informal verbal feedback has also been positive and reiterated the themes outlined above.
The work of McGrath1 specifically outlines the benefits of support from other parents in similar situations and is a particular strength of this group which supports fathers who are in a, thankfully, uncommon situation. In addition to the positives highlighted by group members, the group facilitators report that it has enhanced the amount and level of dialogue between fathers and male staff members. Thus opening another avenue for support. The benefits of the group in addressing the needs identified via the written and verbal feedback is highlighted by Steele7 who describes a tendency for parents to put their own lives ‘on hold’ and experience difficulties in maintaining friendships outside the family. The nature and extent of support required will depend on a range of factors8 such as previous life experience, pre-existing coping mechanisms, culture, environment, socio-economic background, parenting capacity, the child’s illness/disability and parental
understanding of the situation. This diversity of need inevitably makes any group activity difficult to facilitate and this has been evident in fluctuating attendance; which is dependent on the activity and naturally influenced by changes in the child’s condition or other family commitments. In addition to the issues which are experienced across family groups, much has been written about gender differences, particularly relating to loss and bereavement. Specifically, females being primarily emotive and males practical in their responses9. Although the group identifies itself as ‘social’ rather than ‘support’, it is inevitable that there will be some sharing of emotions whether that is overt or implicit in participation, such as the thought that ‘these guys really understand what I’m going through’. In fact, lowering distress in men who have experienced loss or bereavement has been achieved by helping them to adopt increased emotion-orientated behaviours9.
Therefore, the opportunity to be with those who are experiencing similar emotions, even if that does not entail sharing those emotions, is likely to be beneficial. Whilst gender generalisations may be useful in informing practice, it is also important to consider the work of Martin and Doka10 which highlights that responses are not always gender specific and can, in fact, be more closely related to factors such as those referred to by Collinson and Bleakley8. In particular, Martin and Doka10 highlight the influence of environmental factors, such as appropriate housing, on uptake of support and Collinson and Bleakley8 outline three interconnected components of support, i.e. practical, financial and emotional. It could be suggested, therefore, that provision which first addresses factors at the lower end of the hierarchy of needs11 before seeking to address those higher up the scale are necessary for success. Certainly, interventions which meet practical and financial needs would be necessary before addressing emotional
issues, as some peace of mind in these areas is vital for moving onto higher cerebral matters. So perhaps any nonengagement in the group may be more closely related to gaps in other aspects of holistic care provision rather than the group itself. Continuing with the themes identified by Martin and Doka10 such as the influence of transport and geographical location on the uptake of support, this is a logistical factor which has been considered by the group leaders, and although hospice centric activities are important in terms of an emotive bond with the site, there are difficulties in attending from a large catchment area; thus highlighting the need for ‘outreach’ plans which are currently being considered. In addition, although information is still provided to original group members whose child has since died, they no longer participate and whilst it is likely that there are a myriad of reasons for this, it may be linked to negative feelings about the place where their child received palliative care and perhaps died.
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Maintaining a viable group in terms of numbers, is also a challenge as some fathers are reluctant to join as they are unsure of its remit and concerned that participation will require them to discuss and divulge matters which they would prefer to keep private. These doubts are in keeping with the tendency away from emotive responses in males described by Stroebe and Schut 9. However, it is also in keeping with the findings of Brett12 in relation to parental difficulty in acknowledging their support needs and reluctance or even resistance in accepting what is offered, seeing it as a sign of failure on their part. This, alongside western media images and expectations of the strong, silent male will always be a challenge for those who wish to support fathers of children with palliative care needs.
references
The provision of support in palliative care is further complicated by variations in need, type and amount required throughout the child’s life and that this is, at times, unquantifiable13. Nevertheless, practitioners must be mindful to provide support which is in keeping with the families wishes and not ‘enforce’ their own interpretation of what is needed.
5. Tomlinson, D et al (2011) Concordance Between Couples Reporting Their Child’s Quality of Life and Their Decision Making in Paediatric Oncology Palliative Care. Journal of Paediatric Oncology Nursing, 28, 6, p
1. McGrath, P (2001) Identifying support issues of parents of children with leukaemia. Cancer Practice 9 (4), p 198-205.
7. Steele, R (2005) Strategies used by families to navigate unchartered territory when a child is dying. Journal of Palliative Care, 21 (2), p103-11
2. Davies, C (2007) Don’t forget dad. Nursing Standard, 21, 37, p22.
8. Collinson F & Bleakley (2009) Chapter 6 Supporting Children and Families in Price, J and McNeilly, P (2009) Palliative Care for Children and Families: An Interdisciplinary Approach. Basingstoke, UK. Pallgrave Macmillan.
3. Carpenter, B & Towers, C (2008) Recognising fathers: the needs of fathers of children with disabilities. Support for Learning, 23, 3, p118 4. Gore, N (2010) Support for fathers of learning disabled children. Community care. Available online at http://www.communitycare.co.uk/ articles/05/03/2010/113978/supportfor-fathers-of-learning-disabledchildren.htm
6. Penedo, F. J., & Dahn, J. R. (2005). Exercise and well-being: a review of mental and physical health benefits associated with physical activity. Current Opinion in Psychiatry, 18, 2, p 189.
“practical, financial and emotional support are important.”
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T: 029 2053 2245 E: mandy.brimble@tyhafan.org
Working with children and young people with life limiting and life threatening illness. publications of interest
9. Stroebe, M and Schut, H (1999) The dual process model of coping with bereavement. Death Studies, 23, p197-224.
Darlington, AS et al (2013) Granting wishes: parents’ perception of a wish fulfilment for a child with a lifethreatening illness. Acta Paediatrica 102, p 480-482
TL and Doka, KJ (2000) Men 10. Martin, Don’t Cry… Women Do: Transcending Gender Sterotyping of Grief. Series in Death, Dying and Bereavement. Philadelphia. George H Buchanan. 11. Maslow, AH (1943) A theory of human motivation. Psychological Review, 50 (4), p370-96. Available at http:// psychclassics.yorku.ca/Maslow/ 12. Brett, J (2004) The journey to accepting support: how parents of profoundly disabled children experience support in their lives. Paediatric Nursing, 16, 8, p 14. 13. N ICE (2005) Guidance on Cancer Services: Improving Outcomes in Children and Young People with Cancer: The Manual. Available online at www.nice.org.uk/nicemedia/pdf/ C&YPManual.pdf 14. M acdonald, ME, Chilibeck G, Affleck, W and Cadell, S (2010) Gender imbalance in pediatric palliative care research samples. Palliative Medicine, 24 (4), p 435-444. 319.
Korzeniewska-Eksterowicz, A et al (2013) Who Receives HomeBased Perinatal Palliative Care: Experience from Poland. Biomed Research International http://dx.doi. org/10.1155/2013/652321 Nyatanga, B (2013) Transition from pediatric to adult palliative care: more than a physical change. British Journal of Community Nursing 18 (9), p466
the future The dads group at Tˆy Hafan continues to meet approximately six times a year with a focus on sport, social and fundraising activities. In January 2013, a group newsletter was launched. The first edition gave a photographic look back on what had happened in 2012, set out plans and asked for ideas for 2013. There are also plans to develop a specific area of the Tˆy Hafan website. There is no doubt that this is a challenging area of practice within one which is highly demanding and emotive for both families and professionals. Although there is literature available to inform practice, this primarily relates to families rather than fathers specifically. Most studies which seek to explore the experience of parents in healthcare environments, acknowledge that their samples are lacking in male participants. This has been particularly highlighted in paediatric palliative care in a recent systematic review by Macdonald et al14. Substantive conclusions on the
specific support needs of fathers will not be possible until a significant body of knowledge is assimilated which identifies that these needs directly correlate with being male rather than the generic factors identified by Martin and Doka10 and Collinson and Bleakley8. Until then an approach which combines both sets of evidence is advisable. Current participants in the group are very keen to assist in developing this means of support and contributing to the evidence which underpins it. An evaluative study is planned for the near future. It is hoped that this will help, in a small way, towards informing other practitioners who wish to develop similar interventions in their own field of palliative care.
Acknowledgements to Dan Notley who was instrumental in setting up the group and Gareth Jenkins, whose contribution ensures its continuation.
Straatman, L & Miller, T (2013) Paediatric Palliative Care: A survey of paediatricians and family practitioners. BMJ Supportive and Palliative Care 3, p366-371 Williams-Reade, et al (2013) Paediatric palliative care: a review of needs, obstacles and the future. Journal of Nursing Management. Doi: 10.1111/ jonm.12095 Wool, C (2013) State of the Science on Perinatal Palliative Care. JOGNN, 42, p372-382
Please share you thoughts and experiences of working with fathers of life limited and life threatened children, email mandy.brimble@tyhafan.org
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sharing best practice in paediatric palliative care. volume 1 issue 1
T: 029 2053 2245 E: mandy.brimble@tyhafan.org
Courses, study days and conferences Cardiff University
Child Bereavement UK
Rainbow Trust
Pain Management (MSc/PGDip/PGCert) via Distance Learning / E-Learning.
Creative ways of helping bereaved children and families.
Neonatal Palliative Care Conference
24 March 2014 – Buckinghamshire and 11 July 2014 Cheshire.
Email for more information: care.conference@ rainbowtrust.org.uk
More information available at: www.childbereavementuk. org/Training/Ourcourses
care.conference@ rainbowtrust.org.uk
More information available at: courses.cardiff.ac.uk/ postgraduate/course/detail/ p231.html
1 April 2014, Central London.
University of South Wales Symptom Management for Paediatric Palliative care 10 credit e-learning MSc Module, managed by Sue Dunlop and Dr Richard Hain. Email for more information: sue.dunlop@southwales.ac.uk
using M technique® to manage symptoms in a child with Sanfilippo syndrome A case study: Angela Tucker, Complementary Therapist and Mandy Brimble, Lead Practitioner for Education and Research. Therapeutic touch has physiological effects and a psychological impact in the form of relaxation and comfort. ‘M’ technique® is described as a simple method of gentle, structured touch and has been shown to be effective in a number of settings. Palliative care for children and young people with life-limiting conditions is an ‘active and total approach to care’ and embraces the physical, emotional, social and spiritual aspects of a child’s life. These four aspects can be supported through ‘M’ technique ® as follows: Physical ‘M’® can relax and distract a child or young person from painful symptoms and procedures.
success at
Social ‘M’® can help a child or young person become more aware of their surroundings and their own body through the power of touch.
rcn congress
Emotional ‘M’® is a useful tool to enable nonverbal children and young people to communicate their feelings effectively.
for tyˆ hafan
Spiritual ‘M’® enables children and young people
Tˆy Hafan won first prize for two poster presentations at the 2013 Royal College of Nursing Congress in Liverpool. The chronic pain management entry, written by Elise Malpiedi (Care Services Team Member), Mandy Brimble (Lead Practitioner for Education and Research) and Cath Thompson (Head of Care Services), presented a literature review of pharmacological interventions for chronic muscle pain in children receiving palliative care. The complementary therapy entry by Angela Tucker and Mandy Brimble (see page 11) outlines a case study on using ‘M’ technique ® to manage symptoms in a child with Sanfilippo Syndrome.
What is ‘M’ technique®? It is a structured system of touch, which is suitable when a child or young person is very fragile, or at end of life. The ’M’ technique® is very different from massage. There are three fundamental differences: 1) Structure – the ‘M’ technique ® follows a set protocol. Each movement and sequence is done in a distinctive pattern that is never modified. 2) R epetition of strokes – each stroke is repeated three times. The rationale for this set form of repetition is simple; to build up confidence and remove anxiety in the child or young person. 3) Pressure and speed – the ‘M’ technique ® uses a set pressure of 3 on a scale of 0-10. The speed of the ‘M’® is slow, constant and rhythmical2.
references The posters were viewed by members of the forum and presenters were required to give a brief verbal overview of the work. The poster and the presentation were marked and then moderated by the judges. Mandy Brimble, Lead Practitioner for Education and Research, said: “The standard of posters and presentations was very high and it was extremely satisfying when the both posters were recognised.”
1. Breen Rickerby, K & Cordell, B (2012) Application of the M technique to two severely disabled children in Belarus. International Journal of Palliative Nursing. 18, 7, p 355-9. 2. Buckle, J et al (2008) Measurement of regional cerebral blood flow associated with the M techniquelight massage therapy: a case series and longitudinal study using SPECT. Journal of Alternative and Complementary Medicine. 14, 8, p 903-10. 3. Henricson, M et al (2008) The outcome
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to explore and make sense of the world around them.
of tactile touch on stress parameters in intensive care: a randomized controlled trial. Complementary Therapies in Clinical Practice. 14, 4, p 244-54.
Case Study Sally (a pseudonym) is a 15 year old girl who has Sanfilippo 3, which is a progressive life-limiting condition. Over the last few years she has lost her speech, her understanding and her ability to walk; she is fed through a gastronomy. Sally has been accessing Tyˆ Hafan for short break care for the last eight years. Slow but progressive deterioration has been evident over this period of time. During one of her visits to Tyˆ Hafan it was noted that she was becoming increasingly distressed, producing lots of secretions and choking, particularly in the afternoon. Her symptoms were estimated as 9 on the VAS scale, and would last all afternoon. A decision was made to try the ‘M’ technique ® foot routine. The rationale for this decision was that Sally did not tolerate touch well and therefore, the gentle nature of this therapy may be a suitable option. The treatments were carried out in her bedroom, on her bed. Music was not used because she could become distracted and agitated by it. The room was dimly lit and warm. She was propped up with pillows to make her comfortable. At the beginning of the treatment she was very unsettled; her right foot was treated using grape seed oil with a pressure of 3. Towards the end of treating this foot she started to settle, by the time the treatment was completed on the left foot her breathing was calmer and she was more relaxed; she had stopped choking altogether. Her symptoms were reassessed and graded at 3 on the VAS scale. The treatment lasted 10 minutes and was repeated every afternoon over the following three days, which seemed to help reduce the length and severity of the choking episodes. All sessions followed the same pattern and were well tolerated.
4. Robets, K & Campbell, H (2011) Using the M technique as therapy for patients at the end of life: two case studies. International Journal of Palliative Nursing. 17, 3, p114-8. 4. International Children’s Palliative Care Network [ICPCN] (2008) What is Palliative Care? http://www.icpcn.org. uk/page.
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would you like to submit an article? The primary function of Insight is to share best practice in paediatric palliative care. Although Tyˆ Hafan publishes the journal our aim is to provide a collaborative platform for all those working in this field. Therefore, your contributions are both welcomed and valued. All articles should be submitted electronically to Mandy Brimble, Editor and Lead Practitioner for Education and Research Email: mandy.brimble@ tyhafan.org Submissions will be scrutinised by the Editorial Board who may request changes or for the article to be rewritten. The Editorial Team may reject an article, or hold the article on file for a subsequent edition. Articles can be submitted by a single author or co-written. Submissions should be written in Arial 12 and submitted as a Word document. Referencing style is the footnote numbered system. Articles that include details of children and families must be anonymised. Submitted articles may fall under one of the following categories: Quality Improvement Articles (approximately 300-500 words) In this type of article the author wishes to highlight a new or current service or intervention which reflects the principles of children’s palliative care. The article must give a rationale for the service or intervention based on evidence from policy, research or a specialist body of knowledge. Case Studies (approximately 500-1,000 words). This article is intended to highlight the specific needs of the child and family and the support and interventions required to meet those specific needs. The article is
15 years of being there
intended to educate and should include details of condition and other relevant information. The article may look at specific palliative need or a specific condition with multiple palliative needs. D ebate (approximately 500-700 words) This article is intended to create debate amongst fellow professionals on a palliative care topic which divides and creates multiple opinions. The article may be contentious and a current ‘hot potato’ as it were. The article will be heavily based on available evidence to support the many arguments, and will actively seek the views of the target audience.
Regular features Every edition will contain newsworthy or relevant items such as, details of courses and study days, updates of policy and consultations, news from Managed Clinical Network and South Wales Paediatric Palliative Care Forum, Information noticeboard So please let us know if you would like something included.
R eflection (approximately 300-700 words). This article is intended to highlight an analysis of a particular topic of relevance to children’s palliative care. It may be current or historical. The word count allowances are an approximate guide, longer or shorter pieces will be considered.
If you have any queries about making a submission please ring Mandy Brimble on 029 2053 2245 or email on mandy.brimble@tyhafan.org
mandy.brimble@tyhafan.org Tyˆ Hafan - Head Office Hayes Road, Sully, CF64 5XX Tel: 029 2053 2245 Fax: 029 2053 2821 Charity no. 1047912