A Patient Reported Outcome Measure (PROM) for Spiritual Care

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A Patient Reported Outcome Measure (PROM) for Spiritual Care European Conference on Religion, Spirituality and Health Malta 2014 Free Communications Friday May 23 rd, 16:00 17:30 Professor Austyn Snowden Snowden & Snowden Ltd Iain Telfer Department of Spiritual Care The Royal Infirmary of Edinburgh, Scotland

Overview Who we are and what we did Purpose and results of initial study Conclusions and recommendations Scotland-wide study NHS Lothian

What is a PROM? Patient Reported Outcome Measure a series of structured questions that ask patients about their health from their point of view usually in the light of specific treatment or intervention

Context In UK all NHS employees are required to provide economically sound, evidence-based care. In Scotland this is articulated in The Healthcare Quality Strategy for Scotland (The Scottish Government, 2010)

What was our Goal? The original NHS Education for Scotland (NES) Project Goal in 2010 was

What was our Goal? Develop a tool for use in a Scottish context to show the impact of health care chaplaincy on patient well-being

The Lothian PROM (2012) Demographics: During the encounter: After encounter I felt: Statements that describe me now: Age Listened to Felt sense of peace Spiritual person Gender Able to talk A better perspective Believe in God Time in hospital Focused on decisions Faith/beliefs valued My situation was understood Things were under control I could be honest My anxiety had lessened Need to be hopeful Feel in control Need to find meaning Experience love and belonging I am religious Have something to be hopeful about

The Process Chaplain completes referral record, including impression of encounter. Patient completes the Lothian PROM. We analysed the responses.

Out of 39 Respondents Service Acute 32 Paediatric 5 Mental health 2 Age Under 16 1 16-40 13 41-55 10 56-70 9 71-86 5 86+ 1 Time in hospital Under a week 12 1 week to a month 9 1-3 months 6 3-6 months 3 6 months to a year 3 Over a year 3 Not in hospital 3 Gender Male 9 Female 30

What the responses showed Being able to talk about what was on my mind was associated with all measured outcomes During the encounter: After encounter I felt: Statements that describe me now: Listened to Able to talk Focused on decisions Faith/beliefs valued My situation was understood Felt sense of peace A better perspective Things were under control I could be honest My anxiety had lessened Spiritual person Believe in God Need to be hopeful Feel in control Need to find meaning Experience love and belonging I am religious Have something to be hopeful about

What the responses showed Being able to talk about what was on my mind was associated with all measured outcomes During the encounter: After encounter I felt: Statements that describe me now: Listened to Able to talk Focused on decisions Faith/beliefs valued My situation was understood Felt sense of peace A better perspective Things were under control I could be honest My anxiety had lessened Spiritual person Believe in God Need to be hopeful Feel in control Need to find meaning Experience love and belonging I am religious Have something to be hopeful about

On the other hand Traits of religion/spirituality were not correlated with any outcomes During the encounter: After encounter I felt: Statements that describe me now: Listened to Able to talk Focused on decisions Faith/beliefs valued My situation was understood Felt sense of peace A better perspective Things were under control I could be honest My anxiety had lessened Spiritual person Believe in God Need to be hopeful Feel in control Need to find meaning Experience love and belonging I am religious Have something to be hopeful about

On the other hand Traits of religion/spirituality were not correlated with any outcomes During the encounter: After encounter I felt: Statements that describe me now: Listened to Able to talk Focused on decisions Faith/beliefs valued My situation was understood Felt sense of peace A better perspective Things were under control I could be honest My anxiety had lessened Spiritual person Believe in God Need to be hopeful Feel in control Need to find meaning Experience love and belonging I am religious Have something to be hopeful about

What people said Chaplain skills Religion & Spirituality Unmet needs Peaceful resolution to horrible time

How it worked Scenario Female patient in ICU following premature birth of baby girl. Patient now dying of previous cancer. Patient s partner referred by staff nurse due to worries over child custody vis à vis self and patient s sister Sessions Time offered to partner partner s family Liaison between partner, family members and staff Special time for partner and baby visiting Referral record Satisfactory conversation with partner regarding procedures for determining custody led to outpouring of emotion in relation to previous illness, imminent death and visiting arrangements with other family members PROM feedback The chaplain was incredibly helpful in ensuring that I was able to have those final moments with (partner) and that I could say all I needed to say, without later regret of missing the moment. I do not follow any faith it immediately transpired to be irrelevant. I am indebted to his help and wonder how I might ever have survived without it. It s a vital service which is a must in that most gruesome environment of the intensive care ward

How it worked I do not follow any faith it immediately transpired to be irrelevant Chaplain skills Religion & Spirituality Unmet needs The chaplain was incredibly helpful in ensuring that I was able to have those final moments with (partner) and that I could say all I needed to say, without later regret of missing the moment. it s a vital service which is a must in that most gruesome environment of the intensive care ward I am indebted to his help and wonder how I might ever have survived without it. Peaceful resolution to horrible time

Lothian PROM findings The lack of correlation between PROM outcomes and spirituality/religion traits means that chaplains were useful for all this sample. The importance of chaplaincy input was clear. Sense of peace is a good outcome. Being able to talk is important. The use of a PROM can measure the impact of chaplaincy.

What s next Would the findings of the Lothian PROM hold in a larger sample? What improvements to the Lothian PROM would be required to continue the validation process? Would it be feasible to carry out a similar project covering all NHS Scotland Boards? How might this be done?

The goal of our next project To establish if the Scottish Spiritual Care PROM is a useful measure of patient outcome following chaplaincy intervention in a national sample of people attending Community Chaplaincy Listening (CCL).

What are our objectives? Investigate the manner in which the Scottish PROM supports spiritual care for people in CCL. Establish reliability of the Scottish PROM. Establish convergent validity of the Scottish PROM with a validated well-being measure (WEMWBS). Establish the relationship between self reported chaplain efficacy scores and Scottish PROM scores. Make recommendations for the improvement of spiritual care services and chaplains professional development.

Questions? iain.telfer@luht.scot.nhs.uk austynsnowden@yahoo.co.uk www.snowdenresearch.co.uk

Community Chaplaincy Listening Supporting Community Resilience and Wellbeing. Chaplains based in General Practice (GP) Health Centres. Referrals by GPs and other healthcare professionals. Active Listening with the potential for Transformation. Helping people explore their hurts and rebuild confidence in their inner strengths. People tell their story we listen community resilience grows.