tŷ hafan insight vol 3 issue 1

insight

volume 3 issue 1 ISSN 2397-8007

inside this issue: studying pain management at masters level culturally sensitive service provision for black, asian minority ethnic families

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6-9

assessing dyspnoea

10-13

evaluating care: a researcher’s perspective

14-17

out of the wilderness

18-22

sharing best practice in paediatric palliative care

sharing best practice in paediatric palliative care. volume 3 issue 1

welcome to the forth edition of

insight

Mandy Brimble, Editor, Lecturer Cardiff University and Academic Associate at T yˆ Hafan Welcome to our first issue of 2016, the fourth since our launch. The feedback on Insight continues to be positive and in this issue we offer a range of interesting and informative articles.

Alison Griffiths, who is a shift leader at Tyˆ Hafan and a member the Equality and Diversity group, discusses culturally sensitive service provision. This article is based on Alison’s studies at the University of South Wales (details of this module can be found on the Courses, Study Days and Conferences page). The benefit of academic study is also showcased in a reflective account by Elise Malpiedi who has recently completed an MSc in Pain Management at Cardiff University. As Elise describes, this is a distance learning programme which offers a flexible way of furthering your knowledge and skills. The issue of assessing dyspnoea in paediatric palliative care is discussed by nurse, Sophie Jenkins, another piece drawn from academic study. Paediatric palliative care is a relatively new speciality and Sophie’s discussion demonstrates that there is a real need to develop new assessment tools which fully meet the needs of the children, young people and their families.

In our last issue, Anna Bowyer, Sibling Support Co-ordinator at Tyˆ Hafan, described her experience at the European Association of Palliative Care Conference.

In this issue, Anna shares a researcher’s perspective of evaluating palliative care.

Although Anna’s study explored adults receiving palliative care, much of what she says can be applied to research with children and their families. I’m sure you will find this insight into the world of a researcher interesting and informative.

The Dads’ Group, which was the topic of the feature article in our very first edition, has now been formally evaluated.

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This evaluation helped to inform the development of a new role at Tyˆ Hafan which is a dedicated Male Family Support Worker. This is a role which is unique to Tyˆ Hafan and we will bring you more on this in a later edition. In the meantime, Hannah Williams and I present the evaluation of the Dads’ Group which is entitled ‘Out of the Wilderness’. The title is based on a quotation from one of the dads who took part in the evaluation.

We chose this quotation for the title of the article because we feel it captures what this group means to the dads who participate.

Since our last issue, Carol Killa has joined Tyˆ Hafan as Director of Care, which is an exciting new appointment for the organisation. Carol will chair the editorial panel of Insight and I look forward to working alongside her and our other panel members, details of whom can be found on the facing page - we have included biographies for new panel members. You will see that Hayley Humphries, formerly Lead Practitioner for Hospice Care and now Head of Governance and Quality, also joins the panel. Hayley’s knowledge, expertise and eye for detail will be a welcome addition to the editorial team.

As always, we would love to hear from you. If you would like to write a piece for Insight, please see the guidelines on the back page. There are a range of article options. You could also comment on an article, share an experience or submit an information request to gain the benefit of other readers’ specialist knowledge.

The email for submission of items is insight@tyhafan.org or phone Carol Killa on 029 2053 2200.

Mandy

Mandy Brimble: Editor - Lecturer, School of Healthcare Sciences, Cardiff University and Academic Associate, Tˆy Hafan

Tracy Jones: Assistant Editor Head of Community Services and Partnerships, Tˆy Hafan

T: 029 2053 2252 E: insight@tyhafan.org

editorial panel senior team - Mandy Brimble (as shown), Tracy Jones (as shown) Carol Killa: Chair – Director of Care, Tˆy Hafan I grew up in Swansea where I started my general nurse training in 1980. After three eventful years, during which I gained a solid grounding in the nursing process of planning implementing and evaluating care, I trained as a midwife. I was fortunate to spend ten years as a practicing midwife in several busy maternity and obstetric units. In 1998, I qualified as a health visitor and worked in the community in both rural and city areas and gained huge experience in the complexities of wider public health issues resulting from poverty and deprivation.

I was fortunate that Wales was forward-thinking and from the Children’s First grant funding, was able to take up one of the first Looked After Children’s Nurse posts in Wales. Working with children and young people who have undergone separation, physical, social and emotional challenges was one of the most rewarding roles I have had the privilege of carrying out.

I returned back into acute hospital work in 2010 and have been heavily involved in the review of nurse documentation, assessment and care planning processes within ABMU Health Board. While I have held management and senior posts in Health Visiting and Nursing, my love of working with children and families and supporting them through the most difficult periods of their lives has led me to Tyˆ Hafan. I am privileged to be able to lead a dedicated, skilled and committed team and am honoured to be able to provide some support and help to families who are caring for children with life-limiting conditions.

external reviewers

Cath Thompson - Clinical Manager, Skanda Vale Hospice, Landysul, Ceredigion.

Melda Price - Lecturer, School of Healthcare Sciences, Cardiff University

Vera Clement - Palliative Care Clinical Nurse Specialist for Children and Young People, Cwm Taf Local Health Board

Hayley Humphries, Head of Governance and Quality, Tˆy Hafan I began working at Tyˆ Hafan in 2005 as a paediatric nurse on the Care Services team, having previously worked in neonatal care. The role far exceeded my expectations and turned out to be the most unique place to work, among amazing children, young people and families.

After five years of developing my skills at Tyˆ Hafan as part of the experienced team and having progressed to shift-leader level, I moved to the University Hospital of Wales in Cardiff in

their busy paediatric A&E. In 2012, I was lucky to have the opportunity to return to Tyˆ Hafan as a Team Leader and became a Lead Practitioner in January 2015. My current role as Head of Governance and Quality and Registered Manager was formed out of the restructure of the senior management team.

production representatives Sara Webber - Marketing, Communications and Events General Manager, Tˆy Hafan Suzie Howe Care Services Team Leader, Tyˆ Hafan

Henry Dernie - Marketing and Communications Manager, Tˆy Hafan

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sharing best practice in paediatric palliative care. volume 3 issue 1

courses, study days and conferences courses Cardiff University MSc/PGDip/PGCert in Pain Management via Distance Learning/E-Learning.

More information available at: http://courses.cardiff.ac.uk/postgraduate/course/detail/p231.html SMSc/PGDip in Palliative Medicine/Palliative Care. More information available at: http://courses.cardiff.ac.uk/postgraduate/course/detail/p233.html 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 Sue for more information: sue.dunlop@southwales.ac.uk

conferences 22 April 2016: Building Bridges: Home, Hospital and Hospice.

Laura Lynn Children's Hospice, Leopardstown, Dublin 18, Dublin, D18X063. Contact: info@cpcconf.ie Phone number: +353 1 268 6654. Website: http://cpcconf.ie/

18 – 21 May 2016 2nd ICPCN Conference: Children’s Palliative Care – NOW! Paediatric Teaching and Training Centre, Dr Carlos Gianantonia of the Argentinean Society of Paediatrics, 1244 Jerónimo Salguero St., Buenos Aires, Argentina.

Website: www.icpcn.org/event/2nd-icpcn-conferencechildrens-palliative-care-now

publications of interest Cobb, A.D. (2016) Acknowledged Dependence and the Virtues of Perinatal Hospice. Journal of medicine and philosophy, 41 (1), pp.25-40.

Humphrey, L. and Kang, T.I (2015) Palliative care in pediatric patients with hematologic malignancies. The American Society of Hematology Issue:1, pp.490-5.

Keele L, et al. (2015) The Effect of Palliative Care Team Design on Referrals to Pediatric Palliative Care. Journal of Palliative Medicine. doi:10.1089/jpm.2015.0261.

Lichtenthal, W.G. et al (2015) Bereavement Follow-Up After the Death of a Child as a Standard of Care in Pediatric Oncology.

Pediatric Blood and Cancer, 62, pp.S834.

Ling, J et al (2016) Parental decision-making on utilisation of out-of-home respite in children's palliative care: findings of qualitative case study research - a proposed new model. Child: care, health and development, 42 (1), pp.51-9.

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Morrison, W et al (2015) Children’s hospital ICU nurse and physician rankings of important considerations in pediatric end of life decision making. American Journal of Bioethics Empirical Bioethics, 6 (3), pp.50-58.

Ward, C, et al. (2015) Care in the home for seriously ill children with complex needs: A narrative literature review. Journal of Child Health Care, 19 (4), pp.524-531.

Weaver, M.S, et al. (2015) Palliative Care as a Standard of Care in Pediatric Oncology. Pediatric Blood and Cancer, 62, pp.S829-833.

T: 029 2053 2252 E: insight@tyhafan.org

studying pain management at masters level Elise Malpiedi, Care Services Team Leader, T yˆ Hafan Effective pain management is widely accepted as being vital in paediatric palliative care as it affects the children and families quality of life1.

However, pain is one of the most common symptoms reported to be often not effectively managed2. My experience with caring for the children and families at Tyˆ Hafan gave me the passion to increase my knowledge in managing pain in this specialised area of practice. I, therefore, embarked on a Masters in Pain Management at Cardiff University in 2013.

My aim for completing this course was to improve the pain symptoms of the children and young people throughout their palliative care and also at the endof-life stage. Providing palliative care for children can be especially challenging and requires specialist knowledge. I knew there were some gaps in practice that required further development which brought me to the decision to take this course. These gaps included the nursing knowledge in managing pain in children, the inconsistencies and inadequate assessment of chronic and acute pain, and the challenges in diagnosing the pain. I was anxious at first, questioning my ability to complete assignments at Masters level, however, I knew my strengths would benefit the distance learning format and my capability to set goals and be disciplined enough to reach those goals.

The course was part-time over a two year period which permitted me to continue to work alongside the study. The format of the course allowed me to choose topics that would directly impact my practice

within the paediatric palliative care field.

This, therefore, meant I could focus on the areas I felt needed improving. An example of this is an assignment I wrote on the effectiveness of the observation pain assessment tool F.L.A.C.C for the cognitively impaired child. The knowledge I gained from reading and reviewing the studies that evaluated the validity and reliability of the F.L.A.C.C tool lead to the implication of an adapted tool that I designed to use in the daily practice at Tyˆ Hafan. This, in turn, has enhanced the care delivery and reducing the children’s pain symptoms.

Through the research, I have also written clinical guidelines that include the recommendations on the appropriate treatment and care of children with acute and chronic pain in palliative care. These clinical guidelines are based on the best available evidence and are designed to make it easier to ensure that evidencebased care is provided.

I am vice chair of the Education and Research sub-committee. Through this, I organised a small group of professionals at the hospice including nurses, complimentary therapists, care team and family support practitioners to be involved in a subgroup called ‘Symptom Management’. Due to the awareness I had gained from the course, I suggested that our first topic of care should be on pharmalogical management of chronic pain. I designed a poster to

“I feel more confident to contribute in the discussions of managing pain with the multidisciplinary team and give my opinions of the correct plan of care”

signpost the staff on areas of managing this pain. This is the beginning of a line of education posters that will be designed.

I have always been a critical thinker, but the course has greatly sharpened my critical analysis skills. I was challenged to scrutinise studies and pick every detail to develop a satisfying evaluation of its significance and importance. I learnt to make connections between studies and how to sustain a logical argument in an organised manner, which helped develop a deeper understanding of the significance to practice. My writing has become increasingly more concise and I have enriched my ability to point out multiple complexities within a study and employ best-evidence practice.

I feel more confident to contribute in the discussions of managing pain with the multidisciplinary team and give my opinions of the correct plan of care.

Overall, the Pain Management course has been extremely beneficial and I would recommend it to other professionals.

references 1. Together for Short Lives. 2013. Basic Symptom Control. 9th ed.

Bristol: The Rainbows Children’s Hospice Guidelines

2. Hyde, C. Price, J. and Nicholl, H. 2012. Neuropathic Pain Management in Children. International Journal of Palliative Nursing. 18, (10).

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sharing best practice in paediatric palliative care. volume 3 issue 1

culturally sensitive service provision for black, asian minority ethnic families

within a paediatric palliative care setting Alison Griffiths, Nurse, T yˆ Hafan Culturally sensitive service provision and equity in Paediatric Palliative Care (PPC) is an essential aspect of care delivery. The importance of this is reflected in the Macpherson Report1, which became a focus for many subsequent research articles2.

The report identified failures in high quality service provision for ethnic minorities within the United Kingdom following the Stephen Lawrence Inquiry1 and acknowledged that there were inequalities for ethnic minorities in a variety of different settings, healthcare being one of them.

PPC is focused on family and child centred care, engaging the family and providing an equitable and accessible service3. In order to achieve a quality service which is seen to be equitable throughout, PPC services need to strive for excellence. To attain that excellence, Collier4 states care provision must be guided and subsequently strengthened by policies, guidelines, audits and research. This article will identify current guidance for service provision within a paediatric hospice setting for Black, Asian and Minority Ethnic (BAME) communities, and make proposals to implement change. The research available predominately focuses on adult palliative care; this research can equally be applied to PPC due to the core aims encompassing both. The difference being, PPC focuses particularly on serving the unique requirements of the child, young person and family.

service provision Recognition of cultural need in hospice based PPC is not a new concept. The Children Act5 identified that all services required by children needed to respect influences pertaining to culture, religion, race, and linguistic ability. In support of this, the Welsh Government, in line with the United Nations Convention on the Rights of the Child, distinguishes

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that children have the right to be treated with respect and their voices heard, regardless of their race and cultural background 6. Similarly, The International Children’s Palliative Care Network7 and the European Association of Palliative Care8 have recommended core standards for PPC in recognition of the cultural need of children and families who have a child who is life-limited.

Consequently, support at government level, both nationally and internationally, is crucial to ensure PPC services develop in line with BAME community’s needs in order to provide a service which is both equitable and accessible.

Detailed information obtained from the population census9 provides service providers with concrete evidence that migration into Wales of BAME communities has led to a greater diversity of families, some of whom may well access hospice PPC. Despite examples of good practice, literature reviewed continues to identify shortfalls in palliative care provision for BAME groups, recognising that not all services are adequately understood in respect of cultural needs and service provision.

Consequently, it is recognised that the cultural needs of the child and family are not being sufficiently met10. In support of this, Brown11 believes that ethnic minority groups who may access future PPC services should be provided with appropriate and accessible care and be given equal consideration when planning for future care provision. Wienera12 has identified this to be a difficult task primarily because there are many factors to consider when addressing cultures

and the delivery of appropriate care.

Yet despite such inequality of service provision, it is recognised that a core commitment to PPC requires equitable access for all families irrespective of their cultural identity3.

provision at t yˆ hafan Tyˆ Hafan serves children, young people and their families regardless of their ethnic and cultural background.

However, it was recognised by staff working at the hospice that insufficient measures were in place to meet the diverse needs of the BAME families utilising the service. Identified service provision challenges included linguistic difficulties, provision of specific dietary requirements, limited knowledge of cultural awareness within the PPC team and the availability of religious and cultural artefacts for families to use.

Consequently, an Equality and Diversity group was developed in 2009 with a core membership of hospice based staff. The

“Children have the right to be treated with respect and their voices heard, regardless of their race and cultural background”

T: 029 2053 2252 E: insight@tyhafan.org

aim of the group is to address culturally sensitive service provision primarily within the hospice, but, when indicated, services have extended into both the family home and community in order to meet need.

To achieve culturally sensitive services, the Equality and Diversity group identifies areas of good practice, barriers that prevent this, ascertaining necessary legislation, and provide evidence for service development improvements by utilising the Diversity Toolkit13, which was devised by Children’s Hospices UK (now Together for Short Lives). The toolkit has been instrumental in recording evidence of practice within the organisation and identifying areas of good practice, as well as service provision concerns.

Current practice in these areas has resulted in establishing community links with BAME groups, and auditing practice to present at Tyˆ Hafan’s Clinical Assurance Committee. The committee supports the organisation’s commitment to strive for excellence in the delivery of high-quality service provision. However, an external strategy review report was commissioned and carried out in 2011 specifically reviewing the provision of care services for the PPC under discussion. Dame Elizabeth Fradd’s report14 highlighted that care for black and minority ethnic families required greater attention, specifically around access to the hospice.

In response to this report, the care marketing department developed a strategic plan to actively engage with under-represented groups, to inform communities of care service provision and encourage referrals to the hospice within the organisations Business Plan 2013. Training for staff was developed to meet the Business Plan objectives and organisational policy requirements and consists of an e-learning module on Equality and Diversity run by the National Skills Academy 15. This e-learning module aims to provide all staff members with knowledge based on Equality and Diversity in the workplace. This module is now a mandatory requirement of the service. Subsequently, it has been identified by the Equality and Diversity group that in order to develop the service, current service provision must endeavour to meet the needs of all BAME families, thus instilling confidence and ensuring individual flexibility for their specific needs. It is suggested without fully engaging BAME communities through a variety of means, PPC services may run the risk of not being accessed by such families 10.

developing culturally aware services There are many definitions of what culture means. Brown11 introduces the idea that culture ‘includes a set of shared values, expectation, perceptions, and lifestyles based on a common history

and language which enables members of the community to function together’.

It is also important to note that Brown11 warns that within cultures, microcultures exist which can present further challenges to service delivery. This is significant because services and training programmes must therefore strive to safeguard against cultural stereotyping16 by working in partnership with serviceusers and engaging with community leaders to develop strategies to prevent this. Without this acknowledgement that cultural stereotyping exists, services and training may run the risk of becoming culturally inappropriate 2. Thus, to achieve quality care in PPC, Crawely 17 states that care provision needs to comprise of both culturally sensitive and competent elements of delivery. The service and its staff need to develop an understanding of what the demands of this concept places on them. Furthermore, Crawley 17 maintains that cultural sensitivity involves being aware of particular beliefs and practices, whereas cultural competence, as defined by Davis 18, is the “integration and transformation of knowledge about individuals and groups of people into specific standards, policies, practices, and attitudes, to increase the quality of health care”. Additionally, Kagawa-Singer19 believes that a sound understanding of culture is required before strategies can be developed to address any misunderstandings and develop competencies in this area.

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sharing best practice in paediatric palliative care. volume 3 issue 1

the importance of communication Communication is often blamed for the low uptake of palliative care within BAME communities 9. The literature reviewed would suggest that for some BAME families communication barriers exist which prevent them from accessing services. Other barriers identified as significant in preventing access to PPC services are linguistic difficulties 20, likewise Evans et al 2 pinpointed cultural competency and similarly Calanzani et al 10 specifically mention a general lack of cultural awareness as contributing along with communication to the low uptake of services. However, Randhawa 21 believes communication is the most significant problem facing BAME families in accessing PPC. Doherty et al 22 assert that effective communication is crucial to providing a quality palliative care service and Hogston 23 claims it is vital in ensuring that service users receive the care they require. Recent reports

by Francis 24 and Neuberger25 have also identified communication as having not reached expected standards. The Royal College of Nursing 26 recognised the need for identified specific competences in palliative care for children and young people. It supports that communication skills have assumed great importance as a core clinical skill within health care

sectors. By adopting these competencies into training programmes staff will gain the capability to communicate with families and reduce BAME communities’ opinion that they are inexperienced27.

It is important to ensure the training material is relevant, current and meets the requirements for the multidisciplinary hospice team28, thus, providing professionals with the necessary skills, evidence and conviction to understand and respond to the needs of BAME families11.

Communication for BAME families who have limited English proficiency (LEP) is supported by the use of interpreters,

ensuring PPC services provide equal access for all29. Interpreters must strive along with PPC hospice staff to deliver a quality service whereby the care is deemed both equitable and culturally sensitive30. It is furthermore recognised that interpreters working in PPC require to be specifically trained due to the very nature of the discussions held 31. Some discussions will challenge even the most experienced interpreter due to the inability to provide clear translation for specific concepts and language used in PPC. For some languages, interpreters will have great difficulty in translating specific terms and ideas 31. Despite this, by utilising interpreter services, hospice staff reduce the risk of inconsistencies within service delivery, therefore, ensuring a positive influence in the provision of care32. Difficulties further arise when training of hospice staff is inadequate when working in partnership with interpreters in this highly specialised area of PPC30. Resources such as ‘Guidance on Working with Interpreters in a Children’s Hospice or a Palliative Care Setting’33 and ‘Translation and Interpretation Services’34 have been developed to aid and guide hospice staff working in PPC when use of interpreters is infrequent and training limited. The use of interpreters is, therefore, essential when working with families who have LEP and provide encouraging results in increasing the quality of care provided to BAME families

conclusion Known disparities in healthcare signifies that PPC service provision for BAME families requires further development, with the main aim to deliver high-quality care tailored made for specific need.

The first step is to engage more fully with BAME communities through service development, with the objective to increase awareness and understanding of PPC hospice services. Consequent

service development must endeavour to meet culturally sensitive and competent standards of delivery. This needs to be supported at local and government level, by policies, reports, current research and through engaging with the communities within the hospice locality. Without addressing inequalities in service provision, known barriers which prevent families with life-limited children from accessing PPC hospice services will needlessly continue.

In addition to e-learning modules, staff require training in core practical skills in order to deliver culturally appropriate care. Training specific to working with BAME families needs to be embedded into all hospice training programmes, and requires to be regularly updated in view of evidence obtained by the Office for National Statistics that BAME families are continuing to migrate within the locality of the PPC service. Furthermore, training programmes need to recognise the challenges of communication when working with LEP families and develop core competencies for staff working with interpreters in this specific area. The main aim, therefore, is for PPC staff to acquire the relevant skills, knowledge and confidence in the delivery of culturally appropriate services, tailor-made to meet the needs of all communities.

The prime focus of service delivery should be to ensure children, families and communities in need of PPC have the confidence in the service being provided, feel trusted and have their culture respected both now and in the future. To achieve this, reviews of training, policies and methods of engaging with BAME communities need to be sustained and the necessary changes implemented in order to change future practice. The long-term goal being high-quality, culturally sensitive services for BAME communities, thus providing an equitable service for all.

references 1. Macpherson Report (1999) The Stephen Lawrence Inquiry. www.gov.uk/government/uploads/system/uploads/ attachment_data/file/277111/4262.pdf 2. Evans, N. et al. (2012) Systematic Review of the Primary Research on Minority Ethnic Groups and End of Life Care from the United Kingdom, Journal of Pain and Symptom Management. 43(2), pp.

261-286.

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3. F eudtner, C. et al. (2013) Pediatric Palliative Care and Hospice Commitments, Guidelines, and Recommendations, Official Journal of the American Academy of Pediatrics, 132(5), pp. 966972. http://pediatrics.aappublications.org/content/132/5/966. full.html 4. Collier, S (2014) Evidenced Based Nursing and Providing Quality Care. Nursing Children and Young People. 26(2), pp.12.

T: 029 2053 2252 E: insight@tyhafan.org

5. Children Act (1989) www.legislation.gov.uk/ukpga/1989/41/ contents 6. Welsh Government (2008) United Nations Convention on the Rights of the Child: Articles www.childrensrightswales.org.uk/ policy-law-reform.aspx 7. International Children’s Palliative Care Network. (2008) The ICPCN Charter. www.icpcn.org/icpcn-charter/ 8. European Association of Palliative Care (2007) IMPaCCT Standards for Paediatric Palliative Care in Europe. www.eapcnet.eu/LinkClick.aspx?fileticket=ShMQyZuTfqU%3D 9. Office for National Statistics (2013) International Migrants in England and Wales. www.ons.gov.uk/ons/index.htm 10. Calanzani, N. et al. (2013) Palliative and End of Life Care for Black, Asian and Minority Ethnic Groups in the UK Demographic Profile and the Current State of Palliative and End of Life Care Provision. Marie Curie Cancer Care Department of Health, Cicely Saunders Institute. www.mariecurie.org.uk/ Documents/WHO-WE-ARE/Diversity/Palliative%20care%20 BAME%20report%20June%202013.pdf 11. Brown, E. (2007) Religious, Cultural, Secular and Spiritual Aspects of Care in Brown, E. and Warr, B. Supporting the Child and Family in Paediatric Palliative Care London: Jessica Kingsley.

12. Wiener, L et al. (2012) Cultural and Religious Considerations in Pediatric Palliative Care Palliative and Supportive Care Journal. 11(1): pp.47–67. www.ncbi.nlm.nih.gov/pmc/articles/ PMC3437238/ 13. Gandhi-Rhodes, K. Rose-Odogwu, C. (2007) The Diversity Toolkit. Children’s Hospices UK. www.togetherforshortlives.org. uk/assets/0000/3648/Diversity_Toolkit_FINAL.pdf 14. Fradd, E (2011) The Fradd Report. http://www.tyhafan.org/thefradd-report/ 15. National Skills Academy Equality and Diversity E-Learning Module. www.nsahealth.org.uk/e-learning 16. Sharma, R. et al. (2011) ‘Traditional Expectations Versus US Realities: First and Second Generation Asian Indian Perspectives on End of Life Care’, Journal of Internal Medicine, (2012), 27(3), pp.312-317 http://link.springer.com/ article/10.1007/s11606-011-1890-7, 17. Crawley, L. A. et al. (2002) ‘Strategies for Culturally effective End of Life Care’ 36(9) pp. 673-679. http://annals.org/article. aspx?articleid=715261 18. Davis. K. (1997) Journey towards Cultural Competency. Texas Department of Health, National Maternal and Child Health Resource Centre, on Cultural Competency, Vienna, VA: Maternal and Children’s Health Bureau Clearinghouse. http://cecp.air.org/cultural/Q_howdifferent.htm 19. Kaqswa-Singer, M. (2013)‘Teaching Culturally Competent Communication with Diverse Ethnic Patients and Families. New challenges in Communication with Cancer Patients. pp.365-375. http://link.springer.com/ chapter/10.1007/978-1-4614-3369-9_30

21. Randhawa, G. et al. (2003) Communication in the Development of Culturally Competent Palliative Care Services in the UK: a case study, International Journal of Palliative Nursing, 9(1), pp.24-31.

22. D ocherty, S.L. et al. (2012) The Nursing Dimension of Providing Palliative Care to Children and Adolescents with Cancer. Clinical Medicine Insights: Pediatrics, 6, pp.75-88.www.ncbi.nlm.nih. gov/pmc/articles/PMC3620813/ 23. H ogston, S. (2014) Sue Ryder on why Communication is Crucial, One Year after the Francis Report www.ehospice.com/uk/ ArticleView/tabid/10697/ArticleId/8888/language/en-GB/ Default.aspx 24. Francis, R. (2013) Mid Staffordshire NHS Foundation Trust Public Inquiry webarchive.nationalarchives.gov.uk/20150407084003 / www.midstaffspublicinquiry.com/report 25. N euberger, J. (2013) More Care, Less Pathway: A Review of the Liverpool Care Pathway www.gov.uk/government/uploads/ system/uploads/attachment_data/file/212450/Liverpool_ Care_Pathway.pdf 26. Royal College of Nursing (2012) Palliative care for childrenand young people. London. RCN. www2.rcn.org.uk/__data/assets/ pdf_file/0012/488991/004_328.pdf 27. Contro, N.A. et al. (2004) Hospital Staff and Family Perspectives Regarding Quality of Pediatric Palliative Care. American Academy of Pediatrics, 114(5) pp.1248-1252.

28. A mery, J. (2012) Mapping Children’s Palliative Care around the World: An Online survey of Children’s Palliative Care Services and Professionals Educational needs’, Journal of Palliative Medicine, 15(6) pp.646-652.

29. Hughes, B. (2012) South Wales Health Board Spends £800,000 a Year on Interpreters. Wales online 31 December 2012. www.walesonline.co.uk/news/wales-news/south-waleshealth-board-spends-201540 30. S ckenker, Y. et al. (2012a) Her Husband Doesn’t Speak Much English: Conducting a Family Meeting with an Interpreter.

Journal of Palliative Medicine, 15(4), pp.494-498.

31. Sckenker, Y. et al. (2012b) Interpretation for Discussions about End of Life Issues: Results from a National Survey of Health Care Interpreters, Journal of Palliative Medicine, 15(9), pp.1019-1026.

32. Karliner, L.S et al. (2006) Do Professional Interpreters Improve Clinical Care for Patients with Limited English Proficiency? A Systematic review of the Literature, Health Services Research, 42(2) pp.727-754.

33. A spinall, E. et al. (2013) Guidance on Working with Interpreters in a Children’s Hospice or a Palliative Care Setting. Together for Short Lives. www.togetherforshortlives.org.uk/professionals/ external_resources/3860_guidance_on_working_with_ interpreters 34. G handi-Rhodes, K. (2011) A review of translation and interpretation services provided by children's hospices in the UK. BMJ Supportive and Palliative Care, 1, pp.211-212. http://spcare.bmj.com/content/1/2/211.3.abstract

20. D avies, B. et al. (2010) ‘Culturally Sensitive Information Sharing in Pediatric Palliative Care’, Pediatrics 125(4), pp.859-865.

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sharing best practice in paediatric palliative care. volume 3 issue 1

assessing dyspnoea in paediatric palliative care Sophie Jenkins, Nurse, T yˆ Hafan Dyspnoea can be defined by any aspect of breathing that has become unpleasant for the patient1. It requires a holistic approach to management as its cause and severity can be interlinked with physical, psychosocial and spiritual needs1. Davies2 also describes it as being one of the most disturbing symptoms for a parent/carer to view.

Paediatric palliative care (PPC) has become more significant within healthcare in recent years, as children and young people with life-limiting disorders begin to live longer. Palliative care for children and young people with life-limiting conditions has been defined as: “an active and total approach to care, from the point of diagnosis or recognition, embracing physical, emotional, social and spiritual elements through to death and beyond. It focuses on enhancement of quality of life for the child/young person and support for the family and includes the management of distressing symptoms, provision of short breaks and care through death and bereavement.”3 Children and young people within palliative care services have specific needs which differ from adults as they continue to develop and grow during their palliation, and because timescales for the end-of-life phase may be very short

or very long4. As the quotation above illustrates, PPC is holistic and requires medical professionals to have a range of skills5. The leading charity for PPC in the UK, Together for Short Lives, highlights a key aspect of care as ‘the management of distressing symptoms’6. However, in order to manage a symptom effectively, it is first necessary to assess and evaluate it from the patient’s point of view7.

Communication with children is often more difficult than with adults8.

Furthermore Rajapaske and Cormac7 propose that children with cognitive and physical disabilities express their symptoms differently. Children and young people within palliative care services often have a lack of spoken communication due to their condition and are, therefore, reliant on their care-givers use of observational tools to assess their symptoms.

discussion and case study Any symptom, especially dyspnoea, is most effectively described by the patient9 and onlooker perceptions of dyspnoea, compared with the subjective experience of the patient, are poor10. In fact, Haver and Wells11 describe how medical assessments such as blood gases, oxygen levels and respiration rate do not necessarily link together with a patient’s perception of dyspnoea.

Because dyspnoea is subjective12, what appears extremely distressing to the onlooker, particularly the parent, may in fact not cause the child distress.

Rajapaske and Cormac7 identify objective assessment of breathing effort as more effective to denote dyspnoea in the nonverbal patient.

Children and young people within palliative care services have specific needs which differ from adults

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case study Emma (a pseudonym), who is unable to communicate verbally, has a chronic lung condition. Her blood oxygen saturation levels were satisfactory and she appeared well perfused in 0.5 litres of oxygen.

However, she had significant tracheal tug and sternal recession. Her heart rate was high and she was displaying significant muscle spasm, potentially indicating stress. As Emma used a non-invasive ventilator set to CPAP during the night, this was applied to see if her breathing effort could be supported and to assess if her symptoms could be reduced. The instant that the ventilator was in place, Emma’s breathing effort decreased and her heart rate dropped. Her oxygen levels remained the same prior to and during the use of the ventilator. It would appear that Emma was experiencing dyspnoea despite her oxygen levels being sufficient.

This demonstrates that it is especially important to achieve an adequate assessment of non-verbal children and young people, as those who are unable to report are more at risk of under or over management of symptoms13. Potentially, an effective way to achieve a sufficient objective assessment would be through assessment tools.

A systematic review by Dorman and Byrne14 identified29 scales for assessing dyspnoea in adults within a palliative care service. The aim of this review was to find a universal tool which had been validated for use in palliative care. The reviewers searched eight databases and excluded dyspnoea tests involving exercise or exertion. They identified four scales which demonstrated high levels of effectiveness and which had been validated in a subject group within palliative care.

Although this review was of a large scale

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and used similar search parameters, the findings cannot be transferred to the paediatric population as the validation processes for the research included were for more specific adult orientated illness and disease, i.e. COPD. The four identified scales, the Modified Borg scale, the NRS, the CRQ-D and the CDS, also all relied on self-reporting, which as stated, is often not appropriate within PPC. When identifying dyspnoea assessment scales within paediatrics, no reviews of tools were found within a search parameter of30 years using the CINAHL database. These dates were selected as this is approximately the time when PPC was beginning to develop. Individual pieces of research were obtained however. Khan et al15 developed the Paediatric Dyspnoea Scale, a pictorial assessment scale including pictures of lungs with ropes around them getting tighter, colours green to red and appropriate wording. This was validated to be effective in children with asthma as young as age six. The Dalhousie dyspnea scale16 was developed along similar lines, although it used pictures for each subsection of dyspnoea. The scale

is described as validated for children over eight years and it is advocated by the International Network for Cancer Treatment and Research17.

The Respiratory Distress Observational Scale (RDOS)13 includes a 0-2 score for all observable breathing-related behaviours including respiratory rate, accessory muscle use, restlessness, grunting at end of breath, nasal flaring, heart rate, fearful facial expression and paradoxical breathing pattern. The most recently added element (paradoxical breathing pattern) was inserted by the researchers in response to information gathered as the study developed.

The RDOS had a positive correlation with a visual analogue scale and had a reliability of 0.64, assessed using Cronbach’s alpha test. The findings had significant mean differences of less than 0.05, the threshold for statistical significance18. The scale was limited to one demographic and its authors warn against its use in paediatrics due to the differing presentations of children’s breathing effort. However, this is the only measurement scale that is observational and, therefore, appropriate for non-verbal

patients such as those within PPC. At Tyˆ Hafan, no specific assessment scale is used for dyspnoea because care must be evidence-based and as Brook et al10 state, there are no validated scales for breathlessness with PPC and there is a non-availability of assessments tools19.

Treatment is offered using feedback from parents and nurses on the child’s breathing status and by medical assessment.

Malcom et al20 state that research into PPC needs to meet the needs of the family and their priorities. However, medical professionals should be prepared for each eventuality as priorities change with children receiving palliative care, frequently and quickly. When a child is well, breathing difficulties may not rate as highly as mobility, for example.

However, in a study by Weinberger and Abu Hassan21 during the last days of life, breathing difficulties were rated as the worst symptom by over half the parents questioned, demonstrating that dyspnoea is often a considerable source of anxiety for the family and the child22.

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ethical and professional considerations Perceived distress of the child observed by the onlooker, particularly parents, can pose ethical dilemmas when it comes to treatment for dyspnoea. Because it is subjective, measurements of respiratory rate, oxygen saturations and family perceptions are not always relevant11.

Hain and Singh-Jassal1 advocate suction, particularly as the family can assist in this. Oxygen is known only to relieve dyspnoea in hypoxaemia; however, it is described as having a symbolic role to parents2. Its use should be weighed against its burden and benefits for the child, including lowering the anxiety of the family as anxiety in itself increases dyspnoea23. Upper airway secretions in the last 48 hours of life are distressing for those listening and should be treated1.

It is also important to note that parents play a key part in both the assessment and treatment of their children. They often notice changes in their child’s behaviour

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that a person unfamiliar to the child may not12, observations that may be key to assessment of dyspnoea. Shudy et al24 describe the ‘helplessness, anguish and aggravation’ felt by parents of children with a critical injury or illness. Studies

by Melynyk et al25, 26 advocate the use of the Creating Opportunities for Parental Empowerment (COPE) theory within health settings as they found more positive outcomes for the family member when they were more involved in direct care.

recommendations and conclusion With this in mind, recommendations for practice involve drawing on family members skills of observation and knowledge of their children. Similar to a tool developed and evaluated by Stallard et al27, 28 for pain assessment in non-communicative children, a tool for dyspnoea assessment could be produced using cues and signals noticed in children, identified by care givers

that they believe signal uncomfortable breathing. After ethical approval, a project in which parents keep a dyspnoea diary could be initiated within a PPC setting.

However, a greater sample size would be beneficial in consideration of the limitation identified by Stallard et al27, 28, i.e. the care givers assessments relating to their child only and the possible problems of transferring this data to other children. A larger sample size would more accurately link similar cues identified by parents, enhancing the quality of the data collected. The specific demographic for the study would need to be decided on prior to commencement, i.e. children with chronic lung conditions, compared to simply children within PPC services, in order to gain more significant and specific data. Following analyses of the outcomes, further validation could be sought with larger samples from differing demographics and in different areas.

In the future, a validated observational assessment tool could be linked into

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the PPC end-of-life pathways. Within these, decisions are made ahead of time in collaboration with families and medical professionals. This covers what treatment would or would not be deemed appropriate at different stages in the child’s disease progression. An appropriate tool for dyspnoea could help aid decisions on care delivery and assist parents to stay involved in their children’s

care, as well as support nurses and doctors to address all the children’s health needs.

The discussion demonstrates that current assessment tools for dyspnoea do not meet the needs of children and young people receiving palliative care.

A significant amount of research and data collection is required in order to

develop an adequate tool for assessing non-communicative children in PPC. Addressing pain in non-communicative patients has seen significant strides within research where dyspnoea has not.

references 1. Hain, R. and Singh Jassal, S. (2010) Paediatric Palliative Medicine. Oxford. Oxford University Press.

2. Davies, D. (2011). Chapter 32. In.Wolfe, J. et al (Eds) (2011) Textbook of International Pediatric Palliative Care. Phillidelphia.

Elsevier.

3. ACT and RCPCH (2003), A Guide to the Development of Children’s Palliative Care Services (2nd Ed), Bristol: ACT. 4. Chambers, L. et al (2010). In. Pfund, R. and Fowler-Kelly, S. (Eds).

(2010) Perspectives on Palliative Care for Children and Young People – A Global Discourse. Oxford. Radcliffe Publishing.

5. Brown, E. (2007) Supporting the Child and the Family in Paediatric Palliative Care. London. Jessica Kingsley Publishers.

6. Together for Short Lives (2016) Definitions www.togetherforshortlives.org.uk/professionals/childrens_ palliative_care_essentials/definitions 7. Rajapakse, D. and Cormac, M. (2010). Chapter 10. In. Hain, R. and Singh Jassal, S. (2010) Paediatric Palliative Medicine.

Oxford. Oxford University Press.

8. ICPCN (2016) Principles of Children’s Palliative Care. www.icpcn.org/principles-of-cpc/ 9. Kamal, A. et al. (2011) Dyspnea Review for the Palliative Care Professional: Assessment, Burdens, and Etiologies. First in twopart series. Journal of Palliative Medicine 14(10) pp.1167-1172.

10. B rook, L. et al (2012) Chapter 28. In. Goldman, A. et al (Eds) (2012) Oxford Textbook of Palliative Care for Children (2nd Ed).

Oxford. Oxford University Press.

11. H aver, J. and Wells, H. (2011). Chapter 39. In.Wolfe, J. et al.

(Eds) (2011) Textbook of International Pediatric Palliative Care.

Phillidelphia. Elsevier.

12. Frager, G. and Collins, JJ. (2006). Chapter 17. In. Goldman, A. et al (Eds) (2006) Oxford Textbook of Palliative Care for Children.

Oxford. Oxford University Press.

13. Campbell, M. et al. (2010) ‘A Respiratory Distress Observation Scale for Patients Unable To Self-Report Dyspnea’ Journal of Palliative Medicine, 13 (3).

14. D orman, S. Byrne, A. Edwards, A. (2007) Which measurement scales should we use to measure breathlessness in palliative care? A systematic review. Palliative Medicine, 21 (3) pp. 177-91.

15. K han, F. et al. (2009) Pediatric Dyspnea Scale for use in hospitalized patients with asthma. Journal of Allergy and Clinical Immunology, 123 (3) pp.660-4.

16. McGrath, P. et al. (2005) ‘Dalhousie dyspnea scales: construct and content validity of pictorial scales for measuring dyspnea’ Pediatrics, 5 (33).

17. International Network for Cancer Treatment and Research (2009) INCTR Palliative Care Handbook. http://inctr-palliativecare-handbook.wikidot.com/dyspnea 18. Pallant, J. (2001) SPSS Survival manual. Open University Press.

Buckingham.

19. Muckaden M. et al. (2011) Paediatric Palliative Care: Theory to Practice. Indian Journal of Palliative Care, 52-60.

20. M alcolm, C. et al (2011) Challenging symptom profiles of lifelimiting conditions in children: a survey of care professionals and families. Palliative Medicine, 25(4) pp.357-364.

21. Weinberger M. and Abu-Hasan M. (2009) Perceptions and pathophysiology of dyspnea and exercise intolerance. Pediatric Clinics of North America. 56(1) pp.33-48.

22. G oldman, A. et al. (Eds) (2006) Oxford Textbook of Palliative Care for Children. Oxford. Oxford University Press.

23. M cGluggage, H. and Singh-Jassal, S. (2009) Chapter 8. In. Price, J. and McNeilly P. (Eds). (2009) Palliative Care for Children and Families – An Interdisciplinary approach. Basingstoke.

Palgrave Macmillan.

24. S hudy,M. et al. (2006) Impact of Pediatric Critical Illness and Injury on Families: A Systematic Literature Review. Pediatrics, 118 (3). pp. S203 – 218.

25. M elnyk BM, et al. (2004) Creating opportunities for parent empowerment: program effects on the mental health/coping outcomes of critically ill young children and their mothers.

Pediatrics, 113 (6) pp.597-607.

26. M elnyk, B. et al. (2006) Reducing Premature Infants' Length of Stay and Improving Parents' Mental Health Outcomes With the Creating Opportunities for Parent Empowerment (COPE) Neonatal Intensive Care Unit Program: A Randomized, Controlled Trial. Pediatrics, 118 (5).

27. Stallard, P. et al. (2001) Pain in cognitively impaired, noncommunicating children. Archives of Disease in Childhood, 85 pp.460-462.

28. Stallard, P. et al. (2002) The development and evaluation of the pain indicator for communicatively impaired children (PICIC).

Pain, 98 (1-2), pp.145-149

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evaluating care:

a researcher’s perspective Anna Bowyer, Sibling Support Co-ordinator, T yˆ Hafan Evaluating the care we give patients and families is an essential consideration for the ongoing provision of quality healthcare. How we implement these evaluations may increase or decrease how accurately they reflect the care that we provide and, subsequently, the care we continue to provide As ethical practitioners, we have a responsibility to ensure that any evaluation undertaken is part of a wider plan to analyse and use all data gathered to evoke positive change within the care community.

voices for change In my previous line of work, I was a researcher in a palliative care and end-of-life research centre.

Day-to-day, I conducted qualitative research in palliative care settings with adults in receipt of palliative care and their informal caregivers. Although I had done research prior to undertaking this role, I had never worked in a

palliative care setting. The first ever research interview I undertook was with a gentleman in his sixties who was caring for his wife who had cancer. In preparation for the interview, I explained that the nature of the research was to test a questionnaire that enabled patients and carers to have their voices heard on the aspects of care that mattered to them the most. The interview started slowly, as he and I both were getting the hang of the interviewing procedure. We focused on the tick box questions and his understanding of their wording, structure and pertinence.

Gradually, we became comfortable and soon enough he was talking about topics

they were good!

I just Oh they were Oh so good!

I justso wish I had thewish I had the option tell Julie that she was like option to tell Julie thetonurse thatthe shenurse was like a rayforofme! sunshine for me! a ray of sunshine Oh they were so good! I just wish I had the option to tell Julie the nurse that she was like a ray of sunshine for me!

Oh they were so good! I just wish I had the option to tell Julie the nurse that she was like a ray of sunshine for me!

Overall, they were great, but there was that one time when I really wasn’t impressed but that’s not an option so I guess I’ll just rate it without considering that.

Overall, they were Overall, they were great, great, but there was but there was that one that one time when I time when I Overall, they were really wasn’t really wasn’t great, but there was but that’s impressed butimpressed that’s that one time when I not an option not so I an option so I really wasn’t guess guess I’ll just rate it I’ll just rate it impressed but that’s without considering without considering not an option so I that. that. guess I’ll just rate it without considering that.

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Hang on… they didn’t even ask me about how I felt when I left hospital, that was a big deal for me!

Hang on… they Hang on… they didn’t even askdidn’t me even ask me about how I felt about how I felt Hang on… they when I left hospital, when I left hospital, didn’t even ask me that was a bigthat dealwas a big deal about how I felt for me! for me! when I left hospital, that was a big deal for me!

relative to palliative care but beyond the scope of the tick box questions. He became animated, readily giving his opinions on what was really important to him, sharing his story as if he trusted me and had faith that I cared, despite only knowing me for less than half an hour. As I listened, I understood that undertaking this interview was not an unwanted cherry on top of caregiving cake, but an opportunity to be listened to with the understanding that his views would somehow create a change. But what if they didn’t? What if this man gave up his time to share his story, despite many other responsibilities, only to discover that it had been archived because it was too time-consuming, difficult to analyse or meant nothing to decision-makers because it wasn’t quantifiable?

ticking boxes and sharing stories The importance and benefits of gathering the views and opinions of patients and carers is widely acknowledged1. Despite this, outcome measures in healthcare settings often differ from what is important to patients and carers. Instead they focus on care aspects that are easy to measure, including disease severity and cost 2. Questionnaires are used more and more in healthcare settings, such as hospitals and hospices, to help professionals understand patients’ and carers’ experiences of healthcare settings. Often questionnaires comprise of two sections: a tick box section with closed questions where the response options are predetermined and limited to those offered by the questionnaire; and a free text box or an open question, where patients and carers are encouraged to

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share individual stories and experiences.

Tick box questions can be quickly analysed and enable organisations to easily report on care quality to funders and key decision-makers 3. However, tick box questions also prevent respondents from saying everything they want to say, as they are limited to the issues addressed by the questions, rather than raising their own concerns and sharing positive experience 4. They also standardise the patient experience, which may lead to patient-satisfaction levels being over-estimated4. Although this quantitative data is easily managed, from the patient’s point of view, tick boxes do not allow them to share their individual experiences, resulting in questions becoming repetitive and frustrating5.

These problems can be overcome by ensuring that questions are asked about the care aspects that are important to patients and their families6. As previously mentioned, opportunities for free text feedback also overcome closed question limitations by enabling patients to discuss care aspects that were overlooked by the closed questions7.

“The hospice setting meant Although patients and their families willingly community, escape, a safe provide feedback on haven. Very rarely did the their care through 4 questionnaires , interviewees talk about their there is little evidence medical interventions, their of routine analysis of qualitative data drugs or hospital – that was in mixed-methods simply a part of the life that questionnaires. That is to say, questionnaires are they were living.“ considered and devised and given to the public containing free text boxes, with the knowledge that only the quantifiable data (closed we discussed how the questionnaire questions) will be analysed and taken could be changed for the better, but, into account. If this is the case, is it once again, more often than not we ethical to ask carers who have so much deviated from the questionnaire and she to do and patients who are so ill, to shared her own experiences with me. give up their precious time to answer I wondered to myself if it was ‘right’ to questions, when the section that takes be questioning a lady who was clearly the longest and often means the most, fragile, but the more I listened the more won’t even be looked at?

I understood that she was even more validating the hospice setting Following the initial interview, later that day I interviewed the gentleman’s wife, a kind, gentle lady who had being living with cancer for many months. Using my prepared questions as a framework,

passionate about participating than her husband. She spoke honestly about ‘The Big C’ and how, following her diagnosis, the world around her seemed to be preoccupied with death and dying. In contrast, there was nothing more she liked than to go to her local hospice and

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forget for an hour, or maybe two, that she was dying and instead remember how full life could be when surrounded by good people with the same sense of fun and mischief. As I continued my interviews with more patients and carers, a pattern started to form of what hospice support meant to these people collectively. The hospice setting meant community, escape, a safe haven. Very rarely did the interviewees talk about their medical interventions, their drugs or hospital – that was simply a part of the life that they were living. But what was apparent, time and time again, was the value they placed on being somewhere where they joked with staff and peers; where being touched by a professional didn’t necessarily mean pain, but instead meant comfort and relaxation through complementary therapies; somewhere they could talk about their lives holistically, instead of a place where their

illness was the nucleus of their existence.

Every person that I interviewed expressed that they viewed research participation as a way to ‘repay’ the hospice for the excellent care that they had received or took it as an opportunity to voice how important the small things were and how valued their hospice experience was. So the question is, how do we capture the details of care that are second nature to care staff, but so important to patients and their families?

measuring the small things It has been argued that using open questions enables a greater level of discovery9, so that we are able to capture patient-prioritised aspects of care, as well as the details of care, including all the small things that made a differences to the daily lives of patients and their families. Open questions allow patients and carers to supplement and

contextualise their closed question responses by elaborating on their individual experiences, whilst providing an opportunity to record negative experiences not addressed by closed questions10. In turn, this allows for the patient and carer voice to be considered during the implementation and improvement of service provision; aiding development by identifying service pitfalls, highlighting patient-valued best practice and commending staff efforts. There is also the potential for information from open questions to be used for unintended purposes, including performance management of staff.

Open questions not only play a large part in measuring the details of care, but they also act as a mechanism for empowering patients and carers11. Research has shown that patients and carers view open questions as an opportunity to voice personally important interactions

designing patient friendly questionnaires - points to consider What do we want to know? In order for us to improve the provision of palliative care, we need to ensure that the measurement tools we use accurately reflect service reality, in a comprehensive and rigorous manner. As previously acknowledged, the hospice setting is holistic by its very nature, with each of its dramatically differing components working alongside the next to ensure complete quality care. With this in mind, it is highly important that in the initial stages of questionnaire design we ask ourselves what it is we actually want to know. Do you want to get an over-arching impression of the hospice as a whole or do you want to get a detailed impression of a particular aspect of care? Either way, the benefits of designing questionnaires in groups is widely recognised8,9,10 and meeting with a staff group who are able to create useful questions is a great place to start.

Who do we want to ask? Is your demographic audience primarily adult or child, cognitively able or diagnosed with a cognitive disability; are they professionals or members of the public? Questions like these can help us to ensure that we consider any obvious potential issues before a questionnaire is even created in relation to the language used, the way responses are recorded or the general aesthetic of the questionnaire. But even when we ask these questions during the design phase, problems with questions cannot be eliminated. Research has shown that patients and carers completing healthcare questionnaires frequently experience universal problem13,14,15, including confusing wording, aesthetic

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and answer format. In order to overcome these issues, qualitative studies have shown that by piloting questionnaires with the desired respondent population, patients and carers are able to provide practical solutions to overcome commonly occurring issues, facilitating more efficient iterations of questionnaires by making them more understandable, usable and relevant to those completing the questionnaire9.

When will the data be explored? As an essential prerequisite to seeking responses to questionnaires, we must form a plan for data analysis. As previously mentioned, where data from closed questions are quick and easy to analyse, data from open questions are rich in information and thus, are time consuming to explore. When creating your questionnaire, timescales for both qualitative and quantitative data must be established, not only to gain an accurate reflection of service provision, but as part of our moral duty to ensure that the respondents’ voices are heard. In line with the study of youth participation, it could be considered good practice to inform questionnaire respondents, perhaps as part of the instruction page, when this information will be analysed, what will be done with it and where they could find out more about the use of their data as part of a robust feedback loop

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and experiences within the hospice setting. It has previously been suggested that measurement tools that appraise subjective experiences of end-of-life care instil a sense of control in disempowered patients and carers9,11. One qualitative study has shown that most often, open questions were used to commend positive care practice by staff members, but some patients and families emphasised the value of providing feedback whether their experience of care was positive or negative, as long as their contributions would be fed back and used in a meaningful way9.

In combination, the above evidences the need for inclusion and routine analysis of open questions in palliative and end-oflife care questionnaires, in order to more accurately reflect the reality of palliative care in practice9. However, although patients and carers commonly believe

that their responses to open questions will be utilised in shaping services, many health surveys fail to routinely or rigorously analyse these data12. So although, open questions may overcome the issue of how we capture the details of care, we are still left with the moral dilemma of asking for information that we do not have time to analyse.

summary This article has evaluated how the use of closed questions can provide the most efficient and easily accessible data on care quality and performance. It has also identified however, that by using this method, there is a failure to recognise the complexity of people’s experience.

The use of open questions alongside closed questions can mitigate this failure but can result in large quantities of unmanageable data. This in turn may mean that ultimately this material doesn’t

get used, thereby wasting people’s time and stories of their experience.

Consideration should, therefore, perhaps be given to only ask for free text data for a specific purpose. The much needed quantitative data could then be reported to stakeholders effectively whilst using people’s stories to bring the numbers to life. This would enable patients and families to have a platform to have their voices heard, and stories used, in a meaningful way that doesn’t waste their time whilst ensuring that routine data collection remains efficient.

references 1. Sampson C, Finlay I, Byrne, et al. (2014) The practice of palliative care from the perspective of patients and carers. BMJ Supportive Palliative Care. 2014: bmjspcare-2013-000551.

2. Foley G, Timonen V, Hardiman O. (2011) Experience of services as a key outcome in amyotrophic lateral sclerosis (ALS) care: the case for a better understanding of patient experiences.

American Journal Hospice and Palliative Medicine. 29(5): 362.

3. Boynton PM, Greenhalgh T.(2004) Selecting, designing, and developing your questionnaire. BMJ (Clinical research ed).

328(7451): 1312-5.

4. Riiskjaer E, Ammentorp J, Kofoed PE. (2012) The value of openended questions in surveys on patient experience: number of comments and perceived usefulness from a hospital perspective. International Journal of Quality Health Care.

24(5): 509-16.

5. Gillham B. (2008) Developing a questionnaire. London.

Bloomsbury Publishing 6. Heyland DK, Cook DJ, Rocker GM, et al. (2010) The development and validation of a novel questionnaire to measure patient and family satisfaction with end-of-life care: the Canadian Health Care Evaluation Project (CANHELP) Questionnaire. Palliative Medicine, 24(7): 682-95.

7. Marcinowicz L, Chlabicz S, Grębowski R. (2007) Open-ended questions in surveys of patients' satisfaction with family doctors.

Journal of Health Services, Research and Policy, 12(2): 86-9.

8. Gillham B. (2000) Developing a questionnaire (real world research). London: Continuum, 2000.

10. R ichards SH, Campbell JL, Walshaw E, et al. (2009) A multimethod analysis of free-text comments from the UK General Medical Council Colleague Questionnaires. Medical Education.

43(8): 757-66.

11. H eyland DK, Cook DJ, Rocker GM, et al. (2010)The development and validation of a novel questionnaire to measure patient and family satisfaction with end-of-life care: the Canadian Health Care Evaluation Project (CANHELP) Questionnaire. Palliative Medicine. 24(7): 682-95.

12. R ich JL, Chojenta C, Loxton D. (2013) Quality, Rigour and Usefulness of Free-Text Comments Collected by a Large Population Based Longitudinal Study-ALSWH. PloS one, 8(7) 13. B oynton PM. (2004) Administering, analysing, and reporting your questionnaire. BMJ (Clinical research ed).

328(7452): 1372-5.

14. M eyer T, Deck R, Raspe H. (2007) Problems completing questionnaires on health status in medical rehabilitation patients. Journal of Rehabilitation Medicin,39(8): 633-9.

15. P ugh W, Porter AM. (2011)How sharp can a screening tool be?

A qualitative study of patients’ experience of completing a bowel cancer screening questionnaire. Health Expectations, 14(2):170-7 16. O’Kane K. (2007) Do we meet your standards? National Children and Young People’s Participation Standards and Self-Assessment Pack. pg14 www.npt.gov.uk/PDF/candypp_ standards.pdf

9. Bowyer AV, Finlay I, Baillie J, et al (2016) Gaining an accurate reflection of palliative care: The AFTER study. BMJ Supportive and Palliative CarePublished Online First: February 2016 doi: 10.1136/ bmjspcare-2015- 000920

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out of the wilderness:

exploring the value and meaning of the tˆy hafan dads group

Mandy Brimble, Lecturer at Cardiff University and Academic Associate at T yˆ Hafan Hannah Williams, Community Care Services Team Leader at T yˆ Hafan This article describes a project which explores the value and meaning of a group which aims to provide psychosocial support to fathers of life-limited and life-threatened children.

Toys belonging to the children of Tˆy Hafan Dads laid at the summit of Pen Y Fan during the Welsh Three Peaks challenge

Family support is widely regarded as an important factor in the palliative care journey1. The distinct and separate needs of fathers are particularly well documented in research of children with long-term conditions2,3,4 and this naturally extends to paediatric palliative care where differing views and needs of males versus females has been highlighted5. However, the male viewpoint is often minimal or absent as the majority of participants in paediatric

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palliative care research are female6.

Therefore, their needs are often not recognised and remain unmet

background The Tyˆ Hafan Dads’ group was set up in 2006 in recognition that provision, specifically for fathers, locally and nationally, was sparse2,3,4. Initial activities centred on sporting events and this is still a feature of the group. However, the group has evolved to be so much more,

in terms of participant numbers, activities and the depth of support it offers. Since a decision had been made to appoint a dedicated Male Family Support Worker to serve all fathers and young males accessing Tyˆ Hafan’s services, it seemed an opportune time to evaluate the Dads’ group. The findings of the evaluation served two purposes, i.e. to gain a better understanding of the value and meaning of the group to its members and to inform future service provision.

T: 029 2053 2252 E: insight@tyhafan.org

This article will focus on the value and meaning of the group.

data sources The Metalib database was searched using the key words fathers, dads, children, hospice, support, life-limiting, life-threatening and disability. Sources published before 2004 were excluded.

This produced 293 hits. Once irrelevant, duplicated and non-English language sources were discarded, 15 articles remained.

existing literature A number of the articles identified in the literature search were not specifically related to fathers of children with life-limiting or life-threatening illness.

However, they did provide a male perspective in relevant circumstances.

The dearth of literature on this topic is noted by Davies, et al8 and Swallow et al9 as is lack of service provision to specifically support fathers2,3,4.

Therefore, it was important to draw upon transferrable knowledge in order to inform the project and start building an evidence base for practice. The most helpful and encouraging source was an article by Yopp and Rosenstein10, which described a support group for fathers whose partners had died from cancer.

One particular extract from Yopp and Rosenstein10 provided an insight into the likely value of our own group, i.e. … ’when given a safe and supportive environment, express deep emotions, establish psychological bonds with other men.’ 10.

ethical considerations Ethical approval for the project was given by the Head of Care Services in line with the organisation’s research policy. Participants volunteered to take part in the project and the consent form highlighted their right to withdraw at any time. This right was reiterated at the beginning and at the end of the focus group. All participant contributions were anonymised by assigning each of them a number, e.g. D1, identified at the start of the recording and attributed to them on the transcript. The recording and the transcript were held securely. Correlation of individuals to numbers was known only to the project leads.

sampling This was a purposive sample drawn from members of the Dads’ group. Participants were recruited via the self-managed Facebook group, using INVOLVE/

National Institute for Health Research11 guidelines. Other methods of recruiting participants were text messaging and self-identification. All participants were at different stages of their journey, some had children who were alive whilst others were bereaved. The length of bereavement spanned a few months to a number of years. Participants were from a range of age groups and social backgrounds. They had been accessing the group via different mediums, e.g. face-to-face or via social media. In fact, one participant met the group members face-to-face for the first time on the day of the focus group. Previously, all of his interactions with the group had been via social medial. The timeframe for engagement in the group ranged from eight years to a few months. All had a child who had accessed Tyˆ Hafan services.

data collection Qualitative data was collected via a focus group using a semi-structured approach.

Time set aside for the focus group was 45 minutes to an hour. The dialogue was digitally recorded and transcribed verbatim. The group was facilitated by a member of Care Services at Tyˆ Hafan.

Observations and notes were made by a staff member working as the lead for education and research. The focus group was held at the hospice during the weekend. There were eight participants.

analysis Transcription and analysis was performed by the lead author, whose role is independent. This goes some way towards minimising the influence of preconceived ideas which may influence interpretation and analysis of the data.

Though it is well acknowledged that these can never be fully eradicated12. An inductive analytical approach was used to generate codes which closely reflected the data rather than fitting aspects of the data into any existing theoretical framework or pre-conceived notion of what was likely to emerge.

The prevalence of themes was consistently measured on the basis of the number of participants who articulated a theme, rather than the occurrences of the topic. This makes provision for some participants being more vocal than others and perhaps mentioning a topic more than once12.

The main themes emerging from the data were: • Support • Shared and sharing experience • Challenging gender roles • Isolation and loneliness

engagement All participants displayed open postures and/or were leaning forward demonstrating their engagement and willingness to participate. There were very good levels of eye contact with each other, the facilitator and the note taker. After one moment of hesitation, when the first question was asked, the dialogue flowed freely.

It was surprising to the facilitator and to the note taker how frank the fathers were about their feelings.

It had been anticipated that they would be reticent with staff they barely knew or had not met before. This proved not to be the case and demonstrated both their trust in each other and the organisation. The hour allocated for the focus group was exceeded even though the group had arranged to watch a televised football match and have a meal afterwards.

“Family support is widely regarded as an important factor in the palliative care journey”

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support The first question asked by the facilitator related to the main purpose of the group. The unequivocal response from participants was ‘support’. Although unsurprising to the facilitator and note-taker, it was interesting that this was articulated quite so early on in the discussion. The assumption was that it would take a little time for the participants to feel comfortable enough to ‘drill down’ to the deeper individual and shared benefits of the group. Certainly those looking in from outside would primarily see a social group organised around activities.

This is positive in terms of encouraging engagement but could be misconstrued by those who do not appreciate the subtleties that need to be deployed to involve this notoriously difficult to engage group, both in terms of participation13 and research6. In fact, the focus group itself, although clearly stated as part of the itinerary, was a precursor to an afternoon of sharing food and watching sport. The latter part of the afternoon was, no doubt, fun but it was repeatedly revealed during the focus group that many fun activities are interspersed with intensely serious mutually supportive conversations, for example: “Everyone supports each other regardless and even if you don’t really know what to say to somebody because you haven’t experienced it yourself, somebody will just say ‘alright, if you need anything, a chat, let me know’. It’s just everyone just sort of supports each other all the time. It doesn’t matter where you’re at.” (D7) Perceptions that activities are fun, an opportunity to ‘blow off steam’ or vent anger are partially correct, as can be seen from the quote below. However, the value of this as a supportive mechanism is also highlighted.

“If you want to get something off your chest, get it off your chest, abuse your mate, it’s just there to vent. We all have days when things are just cr*p. It’s there as a support” (D7).

As well as the benefit of diversionary activities such as watching or playing sport, the group members plan other physical events such as family walks and hiking challenges e.g. welsh3peaks.

Outdoor physical activity is well documented as a means of promoting a feeling of well-being14 which also enhances emotional resilience15.

Therefore, not only do these activities provide the opportunity for the dads

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to come together as a group to support each other emotionally, but also have physical and other psychological benefits.

Whilst discussing group events, it was clear that the dads had often deliberated about how they could offer appropriate, non-intrusive and sensitive practical support to each another at times of hardship or crisis.

“You know it’s like when X was in here (refers to a child) we all rounded together and we chipped in and got that hamper sent to him. That’s good for dads, that support mechanism being there.”

(D8, Bereaved father)

“Sharing of experience with those in similar circumstances has been shown to be beneficial in parents of lifethreatened children”

Practical support in itself is something which is more akin to male stereotypes particularly in response to emotionally challenging situations16 but, in this scenario, practical support appears to be much more thoughtfully considered before being offered in order to avoid causing offence.

Humour in the form of “banter” was a type of support identified in the discussion, which was demonstrated by the participants throughout, i.e. they not only talked about the use of humour to support and ‘jolly’ each another along but clearly demonstrated this almost constantly during the focus group, for example: “Yeah, yeah and that’s what I found a couple of weeks ago when I was going through a bad patch. I posted something on there (refers to the Facebook page) and yeah, got told to ‘man up’ and you know and all that (others laugh). It was support from like-minded people who know what you’re going through.” (D8, Bereaved father)

shared and sharing experience The opportunity to share experience was a theme which ran throughout the focus group discussion. Sharing of experience with those in similar circumstances has been shown to be beneficial in parents of life-threatened children17. Within the Dads’ group this relates to support in terms of an opportunity to discuss one’s own situation and also to the specific role of a father in a family caring for or mourning a life-limited and lifethreatened child, as illustrated by the quotation below

“…you can talk to any of your family and friends, but no one actually knows what it’s like, what you’re going through like us.” (D3) One of the most revealing exchanges of the focus group was made by a father who had previously only interacted with the group via social media and was meeting those present ‘face-to-face’ for the very first time. He recounted that he had, via the Facebook page, discussed a highly emotive matter with the group.

A matter which he had not discussed with anybody else but felt comfortable enough to reveal to his ‘virtual’ friends within this closed (private) group. The conversation was as follows; “I sort of said this to everyone. ‘I’ve never been proud of that decision, I had to do it. My back was against the wall, I’ve done it’ and to a man everyone said ‘You did what you had to do.’ and that was it.

(D5) But we’re not here to judge, no one’s judging you. We’re all here to support one another. We’re all on the same journey, some of us are a bit further than others but we’re all on the same journey.

(D4) Psychologically I was destroyed ………………… and then you come and you speak to people and…………. I think that’s so important for you as, as a man because you’re supposed to be, you’re supposed to be in control.” (D1, Bereaved father).

challenging gender roles In contrast to the typical male gender role exemplified by the quotation above,

T: 029 2053 2252 E: insight@tyhafan.org

there were a number of instances where the participants were keen to highlight that in families who care for life-limited or life-threatened children gender roles can be reversed. For instance;

caring duties. So it’s important I think to recognise that dads do actually care for these kids as well as mums, coz everyone just assumes that it’s the mother.” (D7)

“Yeah, I’m X’s (names his child) carer coz my wife………………………… So I’m his main carer now and we don’t… we have three hours a week when somebody comes in and takes him out, we’ve just had that upped to six hours now. That’s all the help I get.” (D4)

In addition, the notion that men maintain a ‘stiff upper lip’ in this scenario7 and do not need or want a mechanism by which they can be informally counselled or provide counselling, was challenged on numerous occasions. This is perhaps best demonstrated by the father whose baby had died a number of years ago, within hours of being admitted to the hospice and had remained a core member of the group, participating in most events.

Similarly, sharing care can be difficult for men who work, particularly when that work is full time: “Even if the dad is not the child’s main carer, as X said here (gestures to D5), we go to work 37-40 hours a week, come home and then take over the

“It’s somebody there listening and I think that’s what this group brings……….., it

actually gives you someone to listen to you when you just go on ranting about anything and that’s a massive thing for me.” (D1) This is perhaps a factor which reveals why the group is so successful in supporting fathers. The propensity of males towards practical ways of dealing with grief is highlighted by Stroebe and Schut16. The same authors also illustrated in their ‘dual process model of coping with bereavement’ 16 that when men are able to balance practical approaches with working through their feelings in a more emotionally orientated way, they are more likely to process their grief in a way which allows them to carry on with life whilst maintaining a continuing bond with their dead child18.

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sharing best practice in paediatric palliative care. volume 3 issue 1

isolation and loneliness Given the foregoing themes, the situation of having a life-limited or life-threatened child and the rarity of some of the diseases/conditions experienced by the children (some of which are unique); it is unsurprising that isolation and loneliness is experienced by their fathers.

This was discussed frankly by the group and, although expected, some of what they had to say was difficult to hear. For example; “It’s a place to ‘fit’ as well, coz I don’t have any places I fit in to be honest………… I mean from my point of view, when I’m not working, I’m looking after my girls and when I’m not looking after my girls, I’m sleeping so I don’t have a peer group. I don’t have a lot of people I know, so this is my group of… um friends. (D5) “I’m the same as X (names D5) here, you know I’m a lonely guy, I’ve got no friends” (D4)

This was a particularly poignant moment, as initially the statement was met with laughter followed immediately by contemplative silence. The laughter perhaps signifying disbelief that this had been articulated ‘out loud’, followed by recognition of the statements’ honesty and accuracy. Perhaps the statement which best illustrates the overall value and meaning of the group is that which has been adapted as the title for this piece; “I’d be in the wilderness without it” (D8, bereaved father)

conclusion The final statement above, more than any other quoted here, underlines the importance of this gender specific group to its participants. This evaluative project, which studied a purposive sample via a focus group, provides evidence which can be used to underpin the development of similar groups throughout paediatric palliative care in hospital, hospice or the

wider community. The findings could also be useful in informing the development of support and bereavement services in acute care where death of the child is sudden and unexpected.

acknowledgement Mandy and Hannah would like to express their most sincere and grateful thanks to the eight dads who took part in the focus group. We appreciate you giving up your precious time and thank you for sharing your thoughts and feelings so frankly and freely. We were humbled by what we heard; it really was a privilege to listen to you. In order to maintain confidentiality, none of the participants are shown in the photograph accompanying this article. We have chosen instead to use a photograph taken whilst members of the Dads group were completing the welsh3peaks challenge. The picture shows toys which belong to their children laid at the summit of Pen Y Fan.

references 1. M cGrath, P (2001) Identifying support issues of parents of children with leukaemia. Cancer Practice, 9 (4), p.198-205.

2. Davies, C (2007) Don’t forget dad. Nursing Standard, 21, 37, p22.

3. Carpenter, B & Towers, C (2008) Recognising fathers: the needs of fathers of children with disabilities. Support for Learning, 23, 3, p118 4. G ore, N (2010) Support for fathers of learning disabled children.

Community care. Available online at www.communitycare.co.uk/ articles/05/03/2010/113978/support-for-fathers-of-learningdisabled-children.htm 5. Tomlinson, D et al (2011) Concordance Between Couples Reporting Their Child’s Quality of Life and Their Decision Making in Pediatric Oncology Palliative Care. Journal of Pediatric Oncology Nursing, 28, 6, p.319.

6. 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.

11. INVOLVE/National Institute for Health Research (2014) Guidance on the use of social media to actively involve people in research.

INVOLVE/NIHR. Hampshire. UK. 12. B raun, V. and Clarke, V. (2006) Using thematic analysis in psychology. Qualitative Research in Psychology, 3 (2). pp.77-101.

13. B arber, C (2009) Setting up a male support group to meet the needs of men who are informal carers. Nursing Times, 105, 18, p12-13.

14. P enedo, 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.

15. Childs, E & de Wit, H (2014)Regular exercise is associated with emotional resilience to acute stress in healthy adults. Frontiers in Physiology, 5, Article161, p.1-7.

16. Stroebe, M and Schut, H (1999) The dual process model of coping with bereavement. Death Studies, 23, p.197-224.

7. Laws, T (2004) Fathers struggling for relevance in the care of their terminally ill child. Contemporary Nurse, 18 (1-2), p. 34- 45.

17. G rinyer, A (2012) A bereavement group for parents whose son or daughter died from cancer: how shared experience can lessen isolation. Mortality, 17 (4), p.338-354.

8. D avies, B et al (2004) Living in the Dragon’s Shadow: Fathers’ experiences of a child’s life-limiting illness. Death Studies, 28 , p111-135.

18. K lass, D., Silverman, P., & Nickman, S. L. (Eds.) (1996). Continuing bonds: Newunderstandings of grief. Washington, DC: Taylor & Francis

9. Swallow, V et al (2011) Fathers’ contributions to the management of their child’s long-term medical condition: a narrative review of the literature. Health Expectations, 15, p.157–175.

10. Yopp, JM and Rosenstein, DL (2013) A Support Group for Fathers Whose Partners Died From Cancer. Clinical Journal of Oncology Nursing , 17 (2), p.169-173.

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T: 029 2053 2252 E: insight@tyhafan.org

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 Carol Killa, Chair – Director of Care, Tyˆ Hafan to insight@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.

condition details and other relevant information. The article may look at a 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.

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.

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 intended to educate and should include

If you have any queries about making a submission, please email insight@tyhafan.org

insight@tyhafan.org Tyˆ Hafan - Head Office Hayes Road, Sully, CF64 5XX Tel: 029 2053 2245 Fax: 029 2053 2821 Charity no. 1047912

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symptom control in children’s palliative care study day Thursday 20 October 2016 Court Colman Manor Hotel, Bridgend The Welsh Paediatric Palliative Care Network in collaboration with Tyˆ Hafan Children’s Hospice is pleased to announce the first of a bi-annual series of courses, aimed at paediatricians, GPs and nurses who care for children with life-limiting conditions and at end-of-life in any setting.

The cost of £25 includes refreshments, lunch and administration. For tickets, visit www.yapsody.com/ Tyˆ Hafan - Head Office, Hayes Road, Sully, CF64 5XX. Tel: 029 2053 2245. Charity No: 1047912

the hospice for children in Wales yr hosbis i blant yng Nghymru