1) Spirituality, Health Care and the Spiritual Care
Submitting Institution
University of AberdeenUnit of Assessment
Theology and Religious StudiesSummary Impact Type
SocietalResearch Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
The issue of spiritual care is enshrined within both health and social
care policy in Scotland. Both
sectors often struggle to meet these needs. This impact case study relates
to two unique initiatives
arising from the research of Swinton that have sought to address
this gap in knowledge and
practice. The Kairos Forum for People with Intellectual or Cognitive
Disabilities has focused on
putting academic research into practice for issues relating to
spirituality and intellectual disabilities.
The Community Chaplaincy Listening Project has taken chaplaincy provision
and spiritual care and
extended it into the community. Together these initiatives have
contributed to better practice in
relation to healthcare (especially relating to mental health) and the
lives of people with disabilities,
for the NHS, churches and social care.
Underpinning research
In Spirituality and Mental Health Care: Rediscovering a "forgotten"
dimension (2001,
henceforth SAMHC), John Swinton (Lecturer at the
University of Aberdeen since 1997 and
Professor in Practical Theology and Pastoral Care since 2005) examined the
spiritual experiences
of people with enduring mental health issues and the historical, cultural,
philosophical and doctrinal
reasons why psychiatrists tended to neglect or pathologize the spiritual.
Through an exploration of
the literature combined with qualitative interviews with people suffering
enduring depression, he
concluded that spirituality (broadly defined) is a universal human
phenomenon with important
clinical implications not only for mental health but for human well-being
in general. The book is one
of the first practical and evidence-based studies of the spiritual aspects
of psychiatric practice. It
provided insights into ways of intervening therapeutically whether or not
one shares the patient's
world view. The book was widely hailed by reviewers in medical, social
care, theological and
psychiatric journals, and has been quoted extensively in journals and
books across the disciplines.
The research in the book formed the foundation of two further avenues of
research Swinton
undertook.
(A) Learning Disability: Drawing on SAMHC, Swinton's
research expanded into the area of
the spiritual lives of people with intellectual disabilities. In 1999, he
was commissioned by the
Mental Health Foundation to explore the extent to which spiritual needs
should be considered
alongside physical and occupational needs in the lives of people with
learning difficulties
(published as A Space to Listen: Meeting the spiritual needs of people
with learning disabilities
(2001)). Through interviews with a series of focus groups (N=60) of people
with learning
disabilities, their carers and support workers, Swinton uncovered
the significance of spirituality for
this group of people. He established that people with all levels of
learning disabilities have a strong
interest in spirituality and that spirituality can function for them both
as a mode of language and a
form of self expression, affecting how they perceive themselves and their
place in the world, and
how they cope and respond to crucial events such as bereavement or grief.
The research resulted
in the development of a model through which agencies could train carers
and support workers to
recognize and meet spiritual needs. Following the results of this scoping
study, Swinton received
additional funding for a further piece of extensive research (N=120) which
resulted in the report:
Why We Are Here (2004). This has been followed by further funded
research into community
integration (Jerusalem Trust & Porticus Trust) and an AHRC funded
project exploring the lives of
people with profound and complex learning disabilities. In this project Swinton
developed a unique
methodology for accessing the spiritual lives of people who are often
unable to use words to
communicate. Swinton is currently undertaking an AHRC Follow On
grant that seeks to transfer
the method developed in the AHRC project across to the lives of people
with advanced dementia
and develop teaching and training materials for families and health and
social care workers.
(B) Chaplaincy Provision: SAMHC also formed the
basis of Swinton's subsequent
research in relation to the 2002 Scottish Executive Health Department
(SEHD) guidance on
spiritual care. This guidance requested that spiritual care policies be
developed by the NHS to
ensure that responsive and sensitive services are available for patients,
relatives and carers.
Spiritual care had been seen as something provided by a chaplain or
appropriate religious leader,
mainly to patients. Up to then, spirituality had been seen as a
predominantly religious issue. The
new guidance recognized a broader definition of spirituality (centred on
meaning-making, values
and experience), and posed a challenge for the health and social care
sectors in terms of how
such spiritual care should be administered and how such support should be
focused. As a result,
chaplains were pushed to the centre of healthcare in Scotland. In order to
understand better the
service they provide, the Scottish Executive funded Swinton and a
team of researchers from the
University of Aberdeen (2003-2005) to describe and conceptualize the
present situation, with a
view to providing guidance on ongoing developments, in the area of
spiritual care and chaplaincy
in NHS Scotland. Swinton's team interviewed all 44 full-time
Health-Care Chaplains working in
Scotland twice over a period of 18 months. The final report, published as
What Do Chaplains Do?
(2005), detailed the key configuration of listening, presence, counselling
and accessibility that form
their duties within a secular NHS and outlined the challenges raised by
their shifting role.
References to the research
• Main Research Source Document: John Swinton, Spirituality
in Mental Health Care:
Rediscovering a "forgotten" dimension (London: Jessica
Kingsley Publishers, 2001).
• Reports arising from Main Research Source Document: A
number of reports were
commissioned in response to the research findings of the main research
source document:
[1] John Swinton, A Space to Listen: Meeting the
spiritual needs of people with learning
disabilities (2002) London, Mental Health Foundation ISBN
1903645255;
[2] John Swinton,
Why Are We Here: Understanding the spiritual needs of people with
learning disabilities (2004)
London, Mental Health Foundation ISBN 1903645530;
[3] John Swinton, What Do Chaplains
Do?: A report on a two year investigation into the nature of chaplaincy
in the NHS Scotland
(2005) Edinburgh, Scottish Executive ISBN 0954990102;
[4] John Swinton, Cristina Gangemi,
Matteo Tobanelli, Giada Vincenzi, Enabling Communities to meet People
with Learning
Disabilities and respond effectively to their expressed Spiritual and
Religious Needs: A
Participatory Action Research Approach (March 2013, Kairos
Forum:http://thekairosforum.com/)
• Grants:
[1] Mental Health Foundation; Spirituality and People with
Learning Disabilities; 2001-03,
RGB1510; £70,320;
[2] Scottish Executive Health Department; Meeting the Spiritual
Needs
of Patients in the NHS in Scotland - the Implications for the Role of the
Hospital Chaplain; 2002-03;
RGC1121; £89,175;
[3] Scottish Executive; Developing Health Care Chaplaincy;
2007-08;
RGC1700; £10,000;
[4] NHS Education for Scotland; Developing Health Care Chaplaincy;
2007-08; RGC17001; £10,000 (linked with RGC1700);
[5] AHRC; Understanding the Spiritual
Lives of People with Profound and Complex Learning Disabilities; 2008-10;
RGA1199;
AH/F011482; £163,754;
[6] The Jerusalem Trust; Enabling Communities to meet the
Religious
and Spiritual Needs as expressed by People with Learning Disabilities: A
Participatory Action
Research Approach; 2008-10; RGB3088; £25,000;
[7] The Waterside Trust; Enabling
Communities to meet the Religious and Spiritual Needs as expressed by
People with Learning
Disabilities: A Participatory Action Research Approach; 2008-10; RGB3089;
£50,000 (linked
with RGB3088).
Details of the impact
The publication of the book SAMHC led to two distinct streams of
impact. The first relates to the
impact of the ethos and approach of the research through The Kairos Forum
for People with
Intellectual or Cognitive Disabilities; the second through chaplaincy
provision in GP practices.
A. Learning Disability Impact: The Kairos Forum Impact from
SAMHC in relation to
intellectual disability has come about primarily through the formation and
work of The Kairos Forum
for People with Intellectual or Cognitive Disabilities. The route to
impact from this underpinning
research came through the commissioned reports outlined above (section 2).
Swinton and his
team were commissioned to carry out research and develop training and
teaching materials for a
number of organizations including the Mental Health Foundation, the
Scottish Executive, the NHS
and the Catholic Bishops' Conference of England and Wales. The
commissioned reports informed
the work of religious communities, health and social care providers, and
families. The very
commissioning of the reports identified a clear need in society for
consultancy, policy formation and
advice for churches, para-church organizations and the government in
relation to specialist
provision for the spiritual lives of people with disabilities. These
reports had wide distribution, and
became central to the research and education stream that the Foundation
for People with Learning
Disabilities (which is part of The Mental Health Foundation) developed in
relation to spirituality and
religion from 2004 onwards. From the reports and the research, a number of
teaching materials
were produced for churches, schools, social care facilities and families,
aimed at enabling the
meeting of spiritual needs. These were made available free online and
widely utilized (419 page
views & 601 downloads). Combined with a series of teaching sessions
carried out by Swinton,
these resources impacted health and social care professionals, and ensured
that a broad range of
service providers have access to the findings and the educational
materials. All the reports and
research projects took the model and understanding of spirituality laid
out in SAMHC as central,
since very few, if any, empirically based resources had been available
prior to these projects.
The effect of these projects clearly identified the need for finding
creative ways of
operationalizing the research findings in SAMHC and effectively
communicating it to people `on the
ground', in forms that facilitate understanding, education and effective
training, so as to enable
families, churches and social services to notice and respond to an area of
human experience that
frequently went unnoticed, was often not taken seriously, and for which
there were limited
resources to inform practice. This insight (arising from the above
projects that flowed from the
findings of SAMHC) led directly to the formation of the primary
impact entity: the creation of The
Kairos Forum for People with Intellectual or Cognitive Disabilities. The
Forum has been in
existence since April 2012, and uses the underpinning research to provide
specialist services and
resources designed to support the spiritual lives of people with
disabilities
(http://thekairosforum.com/).
Reports and teaching materials from the research projects are now
available online and the research from SAMHC is currently being
delivered to a broad range of
health, social care and religious communities via the Kairos Forum, to
improve provision for the
spiritual needs of those with intellectual and cognitive disabilities
(see, for example,
http://thekairosforum.com/content/everybody-has-story).
The Forum is the first and only university
based, empirically supported specialist provider of resources, training,
continuing professional
development, consultancy, and expert policy advice in relation to the
spiritual lives of those with
disabilities. It facilitates the crafting and empowerment of `Communities
of Belonging', within both
religious and secular settings, and does this by providing specialist
services which enable and
empower people with disabilities to experience dignity, respect, care,
access and authentic
participation within well formed and empathic communities. It provides:
(1) a forum for inter-professional
networking; (2) the identification of need, development and introduction
of new and
effective resources for spiritual care, religious practice, support and
accompaniment for people with
cognitive or intellectual disabilities; (3) a consultancy service designed
to enable the
implementation of person-centred modes of spiritual care, support and
accompaniment for people
with mild and severe disabilities; and (4) the development and production
of educational
programmes for lay and professional people and for people with
disabilities. The following are
examples of its impact thus far:
-
Many Yet One: Curriculum directory for the catechesis of people
with intellectual disability
preparing for the sacrament of first Eucharist and reconciliation. This
is a curriculum guidance
document and will be published by the Bishops' Conference Department of
Education in 2013. It
specifically names Swinton's work as its underlying theological
basis.
- Kairos was the advisor and provider of training to the More Than
Gold Olympic organization
which offered pastoral support for the Olympic and Paralympic games in
2012, for whom Kairos
was the official press spokesperson and writer of a nationwide training
programme for the
Christian laity. Kairos also contributed to the development of the
Transport for London Olympic
preparation consultation paper, providing two direct recommendations
relating to the training of
staff in effective communication and presenting information in symbols.
- At the request of Archbishop Vincent Nichols, Kairos is now
represented on the executive board
of the John Paul II Foundation for Sport (JPIIFS), offering advice on
issues relating to disability
for the Roman Catholic Church. This means that, following on its work on
the 2012 Paralympics,
Kairos now has a direct impact on the Catholic Church's strategy on
theology and sport and is
providing support for the preparations and training for the next
Paralympics in Rio 2016.
- At the request of Maria Miller (UK Minister for Disability 2011),
Kairos was invited to
Westminster to discuss its vision for the provision of services. As a
result of this, Kairos gave a
formal response to a UK government consultation paper named `Fulfilling
Potential':
odi.dwp.gov.uk/docs/fulfilling-potential/discussion-so-far-rich-text.rtf
- The Forum has been employed (2012-2013 renewable contract) by the
Catholic Bishops'
Conference of England and Wales as the adviser for all policy making and
Bishops' Conference
disability initiatives.
- The Forum has been employed to provide consultancy and training for
agencies, clergy,
catechists and parents in the Roman Catholic Diocese of Leeds.
- The Forum developed a programme of training on spirituality for
management and staff working
for Adelaide Care, a private healthcare provider.
- The Forum is currently developing a training programme for the
Catholic Social Action Network.
Impact has taken place therefore in relation to: policy formation; the
form and content of
associations between people and groups within the church in relation to
those with intellectual
disabilities; cultural values and social assumptions locally, nationally
and internationally in relation
to the spiritual lives of those with disabilities and new forms of
religious expression; and the content
of the education of people, extending significantly beyond the
submitting HEI.
B. Chaplaincy Impact: Community Chaplaincy Listening The
avenue to the impact of
SAMHC on healthcare and chaplaincy in the current census period
began prior to this period with a
series of invitations to Swinton to speak about the research in SAMHC
at various health and social
care conferences across Scotland and England, culminating in Aberdeen
University hosting an
international conference titled Spirituality in Healthcare Practices:
Integrating a Forgotten
Dimension (funded by the British academy: £1,600). This in turn led
to the Scottish Executive to
commission a series of reports (see section 2 above), including specific
policy advisory documents
arising from the research in SAMHC: Spirited Scotland. An
initiative to raise chaplains and health
care professionals' consciousness to the importance of spirituality.
(Scottish Executive: £41,000;
1/4/03); Religion and suicide in the highlands: An exploratory study of
the spiritual landscape of
suicide in the highlands. (NHS Highland, £11,228; 1/6/04);
Developing NHS healthcare chaplaincy
research. (Scottish Executive £10,000; 1/4/07).
These reports provided a route to impact as they burgeoned into an
ongoing working
partnership between Swinton and the NHS. This culminated in 2010
when, as a direct result of
work on the role of chaplaincy in healthcare, Swinton's research
formed the basis of the new NHS
Education for Scotland initiative — Community Chaplaincy Listening (CCL).
Initially, this project
placed chaplaincy `spiritual listeners' in twelve GP practices across
Scotland. These listeners
respond to patients who visit their GPs with vague issues and
existential/spiritual questions which
the GP does not have either time or expertise to deal with. The feedback
and assessment via
PROMS (Patient Related Outcome Measures) indicates that the act of
listening is deeply
therapeutic and healing. Initial feedback came from 250 patients, six GP
practice focus groups and
thirteen chaplains; it reported very positively overall. All said they
would like to see CCL as part of
the continuing NHS service provision. As a result, in 2012, the Scottish
Government asked
Swinton to manage an extension of CCL across Scotland. This next
stage involves a minimum of
32 pilot sites with more than 600 patients benefiting in the first year.
29 chaplains have been
recruited and 30 CCL volunteers have been trained for this next stage, as
chaplaincy provision in
GP practices spreads across Scotland directly as a result of Swinton's
research; the project is
ongoing.
Impact has taken place, therefore, in relation to policy formation, and
the development and
delivery of public services to support the health and welfare of people in
society.
Sources to corroborate the impact
As well as the reports listed above, the following individuals and
websites can be consulted to
corroborate the impact described:
- The Director for Healthcare Chaplaincy and Spiritual Care, NHS
Education for Scotland will
corroborate community chaplaincy listening impact.
- The Former Head of the Spirituality and Intellectual Disabilities
Program at the Foundation for
People with Learning Disabilities will corroborate work related to `A
Space to Listen' and `Why Are
We Here'.
- The Kairos Forum Website (http://thekairosforum.com/)
corroborates the work and impact of the
Forum.
- The Emeritus Professor of Psychiatry at University of Leeds and Past
President of the Royal
College of Psychiatrists will verify the impact of issues relating to
Psychology.
- The Archbishop of Southwark and the Assistant General Secretary at the
Catholic Bishops'
Conference of England and Wales will verify impact in relation to the
Catholic Church.
- The Foundation for People with Learning Disabilities catalogue of
spirituality research
corroborates work relating to the reports produced.
- The United Church Observer article promoting Swinton's work in this
area, with comments
emphasizing impact on readership.