a Collaborative Approach to Spiritual Assessment and Intervention, Developed with People with Aphasia
Keywords:Spiritual health, aphasia, communication, outcomes, collaboration, speech and language therapy, chaplaincy, service user, assessment, intervention
Spirituality is a neglected aspect of healthcare and rehabilitation for those with acquired communication difficulties such as aphasia (language impairment) as a consequence of stroke, neurological disease and dementia. Collaborative working between health professionals and chaplaincy services in promoting spiritual health is desirable and necessary in the context of barriers to the delivery of spiritual care, which are explored from a hospital speech and language therapy perspective. Terminological and institutional barriers, restricted care provision, lack of knowledge and awareness, and lack of resources appropriate in communication impairment, gave rise to “WELLHEAD”, a novel approach to spiritual health assessment, intervention and outcomes measurement originated by Dr Katharyn Mumby. The article describes the theoretical framework and content of WELLHEAD. Reflections are outlined about the positive collaboration between speech and language therapy, chaplaincy services and people with aphasia in feasibility work with WELLHEAD, an approach offering tools for further application and development.
Ashton, J. (2011) “Chaplains Stories – Healthcare: Rotherham NHS Foundation Trust”. In Being a Chaplain, ed. M. Threlfall-Holmes and M. Newitt, 39–46. London: SPCK.
Baker, C., L. Worrall, M. Rose and B. Ryan (2018) “Experiences of Mood Changes and Depression after Post-stroke Aphasia”. Aphasiology 32 (supp. 1): 11–12. https://doi.org/10.1080/02687038.2018.1486384
Baldacchino, D. (2010) “Indicator-based and Value Clarification Tools”. In Spiritual Assessment in Healthcare Practice, ed. W. McSherry and L. Ross, 95–115. Cumbria: M&K Publishing.
Billings, A. (2010) Making God Possible. London: SPCK.
Byng, S., K. Swinburn and C. Pound, ed. (1999) The Aphasia Therapy File. Hove: Psychology Press, Taylor & Francis.
Carey, L. B. (2012) “Utility and Commissioning of Spiritual Carers”. In Oxford Textbook of Spirituality in Healthcare, ed. M. Cobb, C. M. Puchalski and B. Rumbold, 397–408. Oxford: Oxford University Press. https://doi.org/10.1093/med/9780199571390.003.0054
Carey, L. B., C. L. Carey-Sargeant, A. Edwards, R. Aroni, Boer, J. M. (1997) “Speech Pathology Practice: Speech Pathologists and the Role of Chaplains”. Australian Communication Quarterly Autumn: 38–41.
Carey, L. B., and J. Cohen (2015) “The Utility of the WHO ICD-10-AM Pastoral Intervention Codings within Religious, Pastoral and Spiritual Care Research”. Journal of Religion and Health 54(4): 1772–1787. https://doi.org/10.1007/s10943-014-9938-8
Carey, L. B., and B. A. Mathisen ed. (2018) Spiritual Care for Allied Health Practice: A Person-centered Approach. London and Philadelphia: Jessica Kingsley.
Carey, L. B., J. Swinton and D. Grossoehme (2018) “Chaplaincy in Spiritual Care”. In Spiritual Care for Allied Health Practice: A Person-centered Approach, ed. L. Carey and B. Mathisen, 229–57. London and Philadelphia: Jessica Kingsley.
Cheston, R., G. Christopher and S. Ismail (2015) “Dementia as an Existential Threat: The Importance of Self-esteem, Social Connectedness and Meaning in Life”. Science Progress 98(4): 416–19. https://doi.org/10.3184/003685015X14467423210693
Code, C. (2001) “Multifactorial Processes in Recovery from Aphasia: Developing the Foundations for a Multileveled Framework”. Brain and Language 77(1): 25–44. https://doi.org/10.1006/brln.2000.2420
Code, C., N. Simmons Mackie, E. Armstrong, L. Stiegler, J. Armstrong, E. Bushby, P. Carew-Price, H. Curtis, P. Haynes, E. McLeod, V. Muhleisen, J. Neate, A. Nikolas, D. Rolfe, C. Rubly, R. Simpson and A. Webber (2010) “The Public Awareness of Aphasia: An International Survey”. International Journal of Language & Communication Disorders 36 Suppl (s1): 1–6. https://doi.org/10.3109/13682820109177849
Code, C., and B. Petheram (2011) “Delivering for Aphasia”. International Journal of Speech-Language Pathology 13(1): 3–10. https://doi.org/10.3109/17549507.2010.520090
Counter-Terrorism and Security Act (2015) http://www.legislation.gov.uk/ukpga/2015/6/contents/enacted
Cruice, M., R. Hill, L. Worrall, L. Hickson and R. Murison (2003) “Finding a Focus for Quality of Life with Aphasia: Social and Emotional Health, and Psychological Well-being”. Aphasiology 17(4): 333–53. https://doi.org/10.1080/02687030244000707
Culliford, L. (2011) The Psychology of Spirituality: An Introduction. London: Jessica Kingsley.
Dalemans, R., D. T. Wade, W. van den Heuvel and L. de Witte (2009) “Facilitating the Participation of People with Aphasia in Research: A Description of Strategies”. Clinical Rehabilitation 23(10): 948–59. https://doi.org/10.1177/0269215509337197
Department for Health and Social Care (2008) End of Life Care Strategy: Promoting High Quality Care for Adults at the End of their Life. London, UK. Available at: https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life (accessed 16 July 2018).
Dyson, J., M. Cobb and D. Forman (1997) “The Meaning of Spirituality: A Literature Review”. Journal of Advanced Nursing 26(6): 1183–1188. https://doi.org/10.1111/j.1365-2648.1997.tb00811.x
de Jager Meezenbroek, E., B. Garssen, M. van den Berg, D. van Dierendonck, A. Visser and W. Schaufeli (2012) “Measuring Spirituality as a Universal Human Experience: A Review of Spirituality Questionnaires”. Journal of Religion and Health 51: 336–54. https://doi.org/10.1007/s10943-010-9376-1
Enderby, P., and A. John, ed. (2015) Therapy Outcome Measures for Rehabilitation Professionals. Guildford: J&R Press.
Enderby, P., and B. Petheram (2002) “Has Aphasia Therapy been Swallowed Up?” Clinical Rehabilitation 6(6): 604–608. https://doi.org/10.1191/0269215502cr505oa
Fisher, J. (2010) “Development and Application of a Spiritual Well-Being Questionnaire called SHALOM”. Religions 1: 105–121. https://doi.org/10.3390/rel1010105
Frank, A. (1995) The Wounded Storyteller: Body, Illness and Ethics. Chicago: University of Chicago Press. https://doi.org/10.7208/chicago/9780226260037.001.0001
Gardner, F. (2012) “Training and Formation: A Case Study”. In Oxford Textbook of Spirituality in Healthcare, ed. M. Cobb, C. M. Puchalski and B. Rumbold, 451–57. Oxford: Oxford University Press. https://doi.org/10.1093/med/9780199571390.003.0060
Gillespie, A., J. Murphy and M. Place (2010) “Divergences of Perspective between People with Aphasia and their Family Caregivers”. Aphasiology 24(12): 1559–1575. https://doi.org/10.1080/02687038.2010.500810
Gomez, R., and J. Fisher (2003) “Domains of Spiritual Well-Being and Development and Validation of the Spiritual Well-being Questionnaire”. Personality and Individual Differences 35: 1975–1991. https://doi.org/10.1016/S0191-8869(03)00045-X
Government Office for Science (2016) Future of an Ageing Population: Foresight Report Looking at the Challenges and Opportunities of an Ageing Society. London: Government Digital Service Available at: https://www.gov.uk/government/collections/future-of-ageing (accessed 16 July 2018).
Home Office (2016) Prevent Duty: Catalogue of Training Courses. London: Government Digital Service. Available at: https://www.gov.uk/government/publications/prevent-duty-catalogue-of-training-courses (accessed 22 July 2018).
Hilari, K. (2011) “The Impact of Stroke: are People with Aphasia Different to those Without?” Disability and Rehabilitation 33(3): 211–18. https://doi.org/10.3109/09638288.2010.508829
Hunter, J. (2018) End of Life Care in England: A Briefing Paper. Institute for Public Policy Research. Available at: https://www.ippr.org/research/publications/end-of-life-care-in-england (accessed 23 July 2018).
Kauhanen, M. L., J. Korpelainen, P. Hiltunen, R. Maatta, H. Mononen, E. Brusin, K. A. Sotaniemi and V. Myllyla (2000) “Aphasia, Depression, and Non-verbal Cognitive Impairment in Ischaemic Stroke”. Cerebrovascular Diseases 10: 455–61. https://doi.org/10.1159/000016107
Kevern, P. (2013) “Can Cognitive Science Rescue ‘Spiritual Care’ from a Metaphysical Backwater?” Journal for the Study of Spirituality 3(1): 8–17. http://dx.doi.org/10.1179/2044024313Z.0000000001 (accessed 23 July 2018).
King, M. (2016) “The Epistemology of Spiritual Happiness”. Journal for the Study of Spirituality 6(2): 142–54. https://doi.org/10.1080/20440243.2016.1235169
Koenig, H. (2012) “Review Article: Religion, Spirituality and Health: The Research and Clinical Implications”. International Scholarly Research Network ISRN Psychiatry, Article ID 278730. https://doi.org/10.5402/2012/278730
Kuenemund, A., S. Zwick, W. Rief and C. Exner (2014) “(Re-)defining the Self–Enhanced Posttraumatic Growth and Event Centrality in Stroke Survivors: A Mixed-Method Approach and Control Comparison Study”. Journal of Health Psychology 21(5): 679–89. https://doi.org/10.1177/1359105314535457
Lam, J. M. C. and W. P. Wodchis (2010) “The Relationship of 60 Disease Diagnoses and 15 Conditions to Preference-Based Health-Related Quality of Life in Ontario Hospital-Based Long-Term Care Residents”. Medical Care 48(4): 380–87. https://doi.org/10.1097/MLR.0b013e3181ca2647
Laures-Gore, J. S., P. L. Lambert, A. C. Kruger, J. Love and D. E. Davis (2018) “Spirituality and Post-Stroke Aphasia Recovery”. Journal of Religion and Health 57(5): 1–13. https://doi.org/10.1007/s10943-018-0592-4
Livability (2017) The Happiness Course. London. Available at: https://www.livability.org.uk/training/the-happiness-course/ (accessed 22 July 2018).
MacKenzie, S. (2016) “Sacred Work? Exploring Spirituality with Therapists Working with Stroke Patients with Aphasia”. Journal for the Study of Spirituality 6(1): 78–88. https://doi.org/10.1080/20440243.2016.1158457
—(2017) “Mosaics, Ambiguity and Quest: Constructing Stories of Spirituality with People with Expressive Aphasia”. D.Phil. thesis, Canterbury Christ Church University. Available at: [email protected] http://create.canterbury.ac.uk (accessed 24 November 2017).
MacKenzie, S., and I. Marsh (2018) “The Philosopher of Ambiguity: Exploring Stories of Spirituality of People with Aphasia Through the Lens of Merleau-Ponty”. Journal of Disability & Religion 23(3): 211–26. https://doi.org/10.1080/23312521.2018.1509762
Mathisen, B., L. B. Carey, C. L. Carey-Sargeant, G. Webb, C. J. Millar and L. Krikheli (2015) “Religion, Spirituality and Speech-Language Pathology: A Viewpoint for Ensuring Patient-Centred Holistic Care”. Journal of Religion and Health 54(6): 2309–2323. https://doi.org/10.1007/s10943-015-0001-1
Mathisen, B., and T. Threats (2018) “Speech-Language Pathology and Spiritual Care”. In Spiritual Care for Allied Health Practice: A Person-centered Approach, ed. L. Carey and B. Mathisen, 22–54. London and Philadelphia: Jessica Kingsley.
McClung, J. S., L. J. G Rothi and S. Nadeau (2010) “Ambient Experience in Restitutive Treatment of Aphasia”. Frontiers in Human Neuroscience 4(183): 1–19. https://doi.org/10.3389/fnhum.2010.00183
McLellan, K., C. McCann, L. Worrall and M. Harwood (2014) “For Māori, Language is Precious. and Without it we are a Bit Lost: Māori Experiences of Aphasia”. Aphasiology 28(4): 453–70. https://doi.org/10.1080/02687038.2013.845740
McSherry, W., and L. Ross ed. (2010) Spiritual Assessment in Healthcare Practice. Cumbria: M&K Publishing.
McSherry, W. (2010) “Spiritual Assessment: Definition, Categorisation and Features”. In Spiritual Assessment in Healthcare Practice, ed. W. McSherry and L. Ross, 57–78. Cumbria: M&K Publishing.
McVicker, S., S. Parr, C. Pound and J. Duchan (2009) “The Communication Partner Scheme: A Project to Develop Long-term, Low-cost Access to Conversation for People Living with Aphasia”. Aphasiology 23(1): 52–71. https://doi.org/10.1080/02687030701688783
Monod S., M. Brennan, E. T. Rochat, E. Martin, S. Rochat and C. J. Bula (2011) “Instruments Measuring Spirituality in Clinical Research: A Systematic Review”. Journal of General Internal Medicine 26(11): 1345–357. https://doi.org/10.1007/s11606-011-1769-7
Morris, R., A. Eccles, B. Ryan and I. Kneebone (2017) “Prevalence of Anxiety in People with Aphasia after Stroke”. Aphasiology 31(12): 1410–1415. https://doi.org/10.1080/02687038.2017.1304633
—(2019) “A Single Case Narrative of Spirituality Following Aphasia from Traumatic Brain Injury: Findings about Forgiveness and Freedom Using WELLHEAD and SHALOM”. Religions 10(5): 301. https://doi.org/10.3390/rel10050301
—(in review) “People with Aphasia Shape Spirituality Research: Unlocking Insights into Access and Acceptability”.
Mumby, K., and E. Hobbs (2017) “The Shape of Discipleship”. The Reader 117(1): 16–17. Available at: https://www.readers.cofe.anglican.org/u_d_lib_pub/m1171.pdf (accessed 21 July 2018).
Mumby, K., and H. Roddam (2018) “An Investigation of the Feasibility of Spirituality Assessment and Intervention in Aphasia: Exploring the use of SHALOM and WELLHEAD”. Conference presentation abstract: British Aphasiology Society International Conference, Leeds, UK, November 14–16, University of Sheffield, The Edge. Available at: https://www.researchgate.net/profile/Katharyn_Mumby/publications
—(in preparation). “Aphasia and Spirituality: the Feasibility of Assessment and Intervention using WELLHEAD and SHALOM”.
Mumby, K., and A. Whitworth (2012) “Evaluating the Effectiveness of Intervention in Long‐term Aphasia Post‐Stroke: the Experience from CHANT (Communication Hub for Aphasia in North Tyneside)”. International Journal of Language & Communication Disorders 47(4): 398–412. https://doi.org/10.1111/j.1460-6984.2012.00153.x
—(2013) “Adjustment Processes in Chronic Aphasia after Stroke: Exploring Multiple Perspectives in the Context of a Community-Based Intervention”. Aphasiology 27(4): 462–89. https://doi.org/10.1080/02687038.2013.772559
Mundle, R. (2011) “O Word That I Lack! Silence, Speech, and Communicative Bodies in the Rehabilitation (and Redemption) of Stroke Patients with Expressive Aphasia”. Journal of Religion, Disability & Health 15(3): 221–40. https://doi.org/10.1080/15228967.2011.566763
Nagase, M. (2012) “Does a Multi-Dimensional Concept of Health Include Spirituality? Analysis of Japan Health Science Council’s Discussions on WHO’s ‘Definition of Health’ (1998)”. International Journal of Applied Sociology 2(6): 71–77. https://doi.org/10.5923/j.ijas.20120206.03
National Institute for Health & Care Excellence (NICE, UK) (2004) Improving Supportive and Palliative Care for Adults with Cancer. Available at: https://www.nice.org.uk/guidance/csg4
Nolan, S. (2014) “Report: Chaplaincy Outcomes – What the Future Looks Like?” Journal of Health and Social Care Chaplaincy 2(2): 161–64. https://doi.org/10.1558/hscc.v9i1.17763
Nursing and Midwifery Council, UK (2015) The Code: Professional Standards of Practice and Behaviour for Nurses and Midwives. Available at: https://www.nmc.org.uk/standards/code/ (accessed 21 July 2018).
Palmer, R. L., and G. Paterson (2013) “To What Extent can People with Communication Difficulties Contribute to Health Research”. Nurse Researcher 20(3): 12–16. https://doi.org/10.7748/nr2013.01.20.3.12.c9491
Pearl, G. (2014) Engaging with People who have Aphasia: Resources for Stroke Researchers. London: National Institute for Health Research. Available at: https://www.nihr.ac.uk/nihr-in-your-area/stroke/aphasia.htm (accessed 20 July 2018).
Pound, C., S. Parr, J. Lindsay and C. Woolf (2000) Beyond Aphasia: Therapies for Living with Communication Disability. Bicester Oxon: Winslow Press.
Puchalski, C. M., B. Ferrell, R. Virani, S. Otis-Green, P. Baird, J. Bull, H. Chochinov, G. Handzo, H. Nelson-Becker, M. Prince-Paul, K. Pugliese and D. Sulmasy (2009) “Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference”. Journal of Palliative Medicine 12(10): 885–904. https://doi.org/10.1089/jpm.2009.0142
Richards, H., and C. Emslie (2000) “The Doctor or the Girl from the University”. Family Practice 17(1): 71–75. https://doi.org/10.1093/fampra/17.1.71
Rose, T., L. Worrall, L. Hickson and T. Hoffmann (2012) “Guiding Principles for Printed Education Materials: Design Preferences of People with Aphasia”. International Journal of Speech-Language Pathology 14(1): 11–23. https://doi.org/10.3109/17549507.2011.631583
Royal College of Nursing, RCN online learning (2015, updated online October 2018) Getting it Right Every Time – Fundamentals of Nursing Care at the End of Life. Available at: http://rcnendoflife.org.uk/the-patie ey/culture-and-spirituality-2/nt-journ (accessed 5 April 2019).
Royal College of Nursing (2012) Spirituality in Nursing Care: a Pocket Guide. Available at: https://www.rcn.org.uk/professional-development/publications/pub-003887 (accessed 22 July 2018).
Royal College of Speech and Language Therapists (2014) What is Speech and Language Therapy Factsheet. Available at: https://www.rcslt.org/speech-and-language-therapy (accessed 10 March 2019).
Ryff, C. (1989) “Happiness is Everything, or is It? Explorations on the Meaning of Psychological Well-Being”. Journal of Personality and Social Psychology 57(6): 1069–1081. https://doi.org/10.1037/0022-3518.104.22.1689
Savage, D. (2015) “All Faiths and None?” An Audit of Chaplain’s Visits”. Health and Social Care Chaplaincy 3(1): 63–69. https://doi.org/10.1558/hscc.v3i1.26550
Simmons‐Mackie, N., A. Kagan, C. O’Neill Christie, M. Huijbregts, S. McEwen and J. Willems (2007) “Communicative Access and Decision Making for People with Aphasia: Implementing Sustainable Healthcare Systems Change”. Aphasiology 21(1): 39–66. https://doi.org/10.1080/02687030600798287
Skevington, S. M., K. S. Gunson and K. A. O’Connell (2013) “Introducing the WHOQOL-SRPB BREF: Developing a Short-Form Instrument for Assessing Spiritual, Religious and Personal Beliefs within Quality of Life”. Quality of Life Research 22(5): 1073–83. https://doi.org/10.1007/s11136-012-0237-0
Snowden, A., and I. J. M. Telfer (2017) “A Patient Reported Outcome Measure of Spiritual care as Delivered by Chaplains”. Journal of Health Care Chaplaincy 23(4): 131–55. http://doi.org/10.1080/08854726.2017.1279935
Swart, J., and S. Horton (2015) “From Patients to Teachers: the Perspectives of Trainers with Aphasia in a UK Conversation Partner Scheme”. Aphasiology 29(2): 195–213. https://doi.org/10.1080/02687038.2014.961893
Swinton, J. (2001) Spirituality and Mental Health Care: Rediscovering a Forgotten Dimension. London: Jessica Kingsley.
Threlfall-Holmes, M., and M. Newitt, eds, (2011) Being a Chaplain. London: SPCK.
World Health Organisation (2002a) WHO-QOL SRPB Field-Test Instrument. Geneva: Department of Mental Health and Substance Dependence, World Health Organisation. Available at: http://www.who.int/mental_health/evidence/whoqol_srpb_users_manual_rev_2005.pdf (accessed 22 July 2018).
—(2002b) ICD-10-AM (International Classification of Diseases and Related Health Problems-Australian Modification). Geneva: World Health Organization.
How to Cite
© Equinox Publishing Ltd.
For information regarding our Open Access policy, click here.