Spiritual Care and Health: Improving Outcome and Enhancing Wellbeing

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1 Spiritual Care and Health: Improving Outcome and Enhancing Wellbeing International Conference The Beardmore Conference Centre, Glasgow 13 th 14 th March 2012 Workshop 4 A Patient Reported Outcome Measure for Spiritual Care Iain Telfer, Royal Infirmary of Edinburgh

2 Context and Vision The Healthcare Quality Strategy for NHS Scotland, May 2010 to deliver the highest quality healthcare services to people in Scotland the combined effects of millions of individual care encounters that are consistently person-centred, clinically effective and safe giving people the chance to comment systematically on their experience of healthcare and its impact on their quality of life the assurance that services will be improved in the light of what people tell us about their experience and outcomes support to engage in shared decision-making about their care

3 Implications Putting people at heart of NHSScotland their perceptions and experience that will determine improvements in care About making measureable improvements to care Fostering partnerships that respect individual needs and values (with) compassion, continuity, clear communication and shared decision-making Measurable interventions on which we can report progress

4 Leading to person-centred and compassionate care a patient-based measure of health outcomes and experience (that) can also be used to drive improvement in the quality of healthcare services (the) collection of appropriate data to measure patient reported outcomes (PROMs) national and local audit programmes (that) support the development of appropriate indicators of quality, rigorous peer review and local action to address inappropriate variations in care a drive to shift the balance of care away from hospital services towards the community

5 Evidence Based Spiritual Care The New Driver the economic imperative providing a record of what chaplains do the hard evidence for budget holders accountability the argument for best practice writing up encounters peer reflection / review supervision service improvement and development

6 The Story So Far The King s Fund (England) Independent expert think-tank working to secure better health and health care for all, these qualities enable us to play a special role in shaping policy, developing effective practice, and supporting individuals and organisations The ultimate measure by which to judge the quality of a medical effort is whether it helps patients (and their families) as they see it. Anything done in healthcare that does not help a patient or family is, by definition, waste, whether or not the professions and their associations traditionally hallow it. (Berwick, 1997) The purpose of PROMs is to get patients own assessment of their health and health-related quality of life

7 PROMs History Since 2009 Hip surgery Knee surgery Hernia repair Varicose veins (Cataract surgery) Extending to Mental health Cancer care Asthma COPD Diabetes Epilepsy Heart failure Stroke

8 PROMIS (USA) Patient Reported Outcomes Measurement Information System Funded by US Federal National Institutes of Health (NIS) a system of highly reliable, valid, flexible, precise, and responsive assessment tools that measure patient-reported health status dynamic tools to measure health outcomes from the patient perspective.

9 NHS Education for Scotland (NES) 2010 Project Goal Come up with a tool or an instrument we can use in a Scottish context which can show the impact of health care chaplaincy on patient wellbeing 2011 First Draft Questionnaire Presented to Research Informing Practice Conference, Perth Pilot Community Chaplaincy Listening Project (CCL2)

10 NHS Lothian Associate Nurse Director, Strategic Development A Lothian specific questionnaire providing hard data describing significant spiritual care encounters and patient assessment of these interventions Scottish Government Grant - 12,500 negotiated with NES In critical partnership with CCL2 PROM Refinement / revision of NES draft questionnaire Data gathering (March May 2012), Report, Academic Article Concurrent 4 th year medical student research project to include qualitative interviews

11 From the Literature

12 The Existing Evidence on the Impact of Chaplaincy Theme Example of citation of Item in pilot PROM Example validated scale and question theme from literature Control (Farber et al., 2010) I am in control of my situation Herth Hope Index (I have a sense of direction) Hope (Van Gestel-Timmermans et al., 2010) Everything is going to be ok Herth Hope Index (I have a positive outlook towards life) BDI (opposite : pessimism scale) Being listened to (Ai & McCormick, 2009) I was listened to GESS-R (In future I expect that I will be listened to when I speak) Duke-UNC Functional Social Support Questionnaire (I get chances to talk to someone about problems ) Being understood (Gonzalez et al., 2011) My situation was acknowledged and understood Sources of meaning profile (being acknowledged for personal achievements)ways of Coping (WAYS) (I accepted sympathy and understanding from someone) Being valued (Hebert et al., 2001) My faith and/or beliefs were valued Spiritual Well Being Scale (I believe that God is concerned about my problems) Comfort (Pargament et al., 2011) I was able to talk about what was on my mind Social Support Questionnaire (Whom can you count on to console you when you were upset?) Brief COPE(I ve been trying to find comfort in my religion or spiritual beliefs/i ve been getting emotional support from others) Involved in decisions (Palmer & Miedany, 2009) I was involved in decisions about my care GHQ (I felt capable of making decisions about things) Warwick-Edinburgh Mental Well-being Scale (I ve been able to make up my own mind about things) Honesty (Ai & McCormick, 2009) I could be honest with myself about how I was feeling CARE (How was the [chaplain] at being honest but not negative about your problems) Relief From Distress Relevant information (Bay et al., 2008) My levels of anxiety had lessened HADS (I can sit at ease and feel relaxed) On faith: (Ai & McCormick, 2009) On illness: (Mercer & Murphy, 2008b) I found I was able to gain a better perspective on my illness CARE (How was the [chaplain] at: fully answering your questions, explaining clearly, giving you adequate information; not being vague) Cope (Bay et al., 2008) Things seemed manageable again [Opposite construct]: BDI screening question (Have you often felt helpless about the future?) Peace (Kannan, 2008) A sense of peace that had previously not been there RCOPE (Sought help from God in letting go of my anger [anger is described in this section as an offense to peace ])

13 How a PROM takes shape Being listened to Involved in decisions Comfort Being valued Control Honesty Relief from distress Hope Being understood Peace Cope Relevant information

14 Emerging THEMES What is HEALTH? What is WELLBEING? What is RESILIENCE? What is QUALITY OF LIFE? How do we MEASURE these?

15 Questions PROMs Raise? What opportunities do PROMs data present?? What are the limitations of PROMs and, what are the possible pitfalls in the use and over-interpretation of data produced from them?? What work needs to be done now in order to get the most out of PROMs?

16 SWOT Analysis Seems realistic realistic It s impossible to measure We could define the evidence underpinning our profession If we don t get this right we re redundant

17 Improving Outcome and Enhancing Wellbeing Addressing Patients Emotional and Spiritual Needs: Paul Clark, Maxwell Drain, Mary P Malone, Joint Commission Journal on Quality and Safety, December 2003, Volume 29 Number 12 3 Questions 1. Are patients emotional and spiritual needs important? 2. Are hospitals effective in addressing these needs? 3. What strategies should guide improvement? Findings Data analysis revealed a strong relationship between the degree to which staff addressed emotional/spiritual needs and overall patient satisfaction. The emotional and spiritual experience of hospitalization remains a prime opportunity for Quality Improvement.

18 References Ai, A. L., & McCormick, T. R. (2009). Increasing diversity of Americans faiths alongside Baby Boomers' aging: implications for chaplain intervention in health settings. Journal of health care chaplaincy, 16(1-2), doi: / Bay, P. S., Beckman, D., Trippi, J., Gunderman, R., & Terry, C. (2008). The effect of pastoral care services on anxiety, depression, hope, religious coping, and religious problem solving styles: a randomized controlled study. Journal of religion and health, 47(1), doi: /s Farber, E. W., Bhaju, J., Campos, P. E., Hodari, K. E., Motley, V. J., Dennany, B. E., Yonker, M. E., et al. (2010). Psychological well-being in persons receiving HIV-related mental health services: the role of personal meaning in a stress and coping model. General hospital psychiatry, 32(1), doi: /j.genhosppsych Gonzalez, M. T., Hartig, T., Patil, G. G., Martinsen, E. W., & Kirkevold, M. (2011). A Prospective Study of Existential Issues in Therapeutic Horticulture for Clinical Depression. Issues in Mental Health Nursing, 32(1), Informa Healthcare New York. doi: / Hebert, R. S., Jenckes, M. W., Ford, D. E., O Connor, D. R., & Cooper, L. a. (2001). Patient perspectives on spirituality and the patient-physician relationship. Journal of general internal medicine, 16(10), Retrieved from ype=abstract Palmer, D., & Miedany, Y. (2009). Patient-reported outcome measures in rheumatology. Nursing and Residential Care, 11(4), Van Gestel-Timmermans, H., Van Den Bogaard, J., Brouwers, E., Herth, K., & Van Nieuwenhuizen, C. (2010). Hope as a determinant of mental health recovery. Scandinavian journal of caring sciences, 24 Suppl 1, doi: /j x

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