Jill Burleson, ANP-C, AOCNP, BMTCN

 Swinton and Pattison (2010) –What spirituality does is more important than what it is. Emphasis on actively listening to patients instead of finding a universally accepted definition.

One and the same?
Or different?

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 Over the course of the last decade, there has been a more general consensus that spirituality is a broad concept, referring to connection with a larger than self being, connection to others and to the world and that this connection gives life meaning. Can be in the form of religion, but also through meditation, nature or art.

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 Through the years the definition of spirituality has evolved.
 Nightingale: “Place for God to act.”
 Webster: “Attachment to religious values”
 Reed (1986): “perception of beliefs expressing sense of relatedness to something greater than oneself”

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 Hinterkopf(1998): “unique personally meaningful experience that is described as a subtle bodily feeling that brings new and clearer meanings”
 Tanyi (2002) Personal search for meaning-may or may not be related to religion. What gives meaning to life and inspires person to be their optimal being.
 Jones (2006): “recognizing your own worth while contributing to your community and having a fulfilled sense of purpose”
 Sessanna et al (2007) Four themes that must be included in definition: Meaning of life, mystical phenomena, religious beliefs and nonreligious beliefs.
 Narayansasamy (2009) Internal source connecting us with others and guiding our lives

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 NCI (2012)-”Having to do with deep, often religious, feeling and beliefs, including a person’s sense of peace, purpose, connection to others, and beliefs about the meaning of life.”
 Rudolfsson et al (2012)-Themes: Part of greater wholeness; togetherness; inner strength

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 Dynamic and personal set of beliefs involving a deep, meaningful and integrating connectedness with oneself, others, nature, and the transcendent.
Piderman, et al. 2015

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 Moral authority-where does the guide for making decisions come from
 Vocational-Where does sense of purpose lie
 Aesthetic-expressions of creativity
 Social-Connections
 Transcendent-Sense of something greater
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 Vachon (2008)- “Organized system of beliefs, activities, rituals, and symbols that facilitate the sense of attachment to God, or some higher power.
 Salmasy (2001)-Religion is a “set of beliefs, practices and language that characterized a community that is searching for transcendent meaning in a particular way, generally based on belief in a deity.”
 Webster-”A personal set or institutionalized system of religious attitudes, beliefs, and practices.”

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 Organized behaviors that attempt to put spirituality into practice; serves to direct the expression of spirituality
 Reflects a social and institutional nature
 Collin (2012) terminally ill patients will seek connection with a higher power, whether or not they considered themselves religious prior to this time and may not adapt a religious lifestyle
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 Viewing religion as a means to an end--seeking personal gain through religion
 Examples: “I go to church to hang out with my friends” or more subtle “I am part of many committees in my church that allows me to have power”
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 Internalized religion
 Motivated by their religion; seeks to live their life based on their beliefs
 Use religion as a framework to gain understanding and find meaning in life.
 Examples: “I serve meals at the homeless shelter because the teachings I believe in tell us to feed the poor and I enjoy helping people.” “My whole approach to life is based on my religion.”
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 Studies found a negative correlation between intrinsic religiosity and depression, while the opposite held true for extrinsic religiosity and depression
 Nelson, et al (2009) Positive correlation between faith and intrinsic religiosity, no significant correlation between extrinsic religiosity and meaning/peace
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 Multidimensional Concept that includes a motivational component for active, individual, engagement leading to a fluid, ever changing valuing and revaluing that allows for a sense of purpose, hope, personal growth and fulfillment in the ownership of one’s life and exists until death, while involving a connectedness with others, the world, and self.

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Hope comes from within; hope is essential; choice/mindset
Considered to be an effective coping strategy
Mickley and Soeken (1993) Relationships exist between intrinsic religiousness and hope
Benzein, Norbeg, and Saveman (2001) found hope to be a dynamic experience important to having a meaningful life and dignified death.
Williams, et al (2013) hope involved themes of refocusing from present situation to a positive future, possibilities within uncertainty, and hope outcomes of increased coping, decreased grief.

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Maintaining hope is important
Patients seek this from family members and from providers—sharing their thoughts, feeling that someone else has hope for them, knowing their survivors
Providing hope can always be accomplished
There are different types of hope
Hope for a cure, for another day, for a good death

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 Many definitions of spirituality include search for meaning as a concept (Stephenson and Berry, 2013, Viser, et al, 2010, Pulchalski and Romer, 2000, Karasu, 1999, Girardin, 2000, Reed, 2009)
 Human spirituality is a quest for meaning (Morgan 1993)
 The pursuit of worthwhile goals and a sense of fulfillment.
 Individual perception, understanding of one’s life/activities and the value placed on them (Brandstatter, et al 2012)
 Creative
 Purpose in suffering (Frankl, 1984)
 Valuing/reevaluating your values
 Personal growth throughout life
 Not static
 It’s the meaning of our lives that constitutes our sense of value, worth, and purpose. (Smith, et al 2015)

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 Existential Meaning-perception of person’s place in the world (Frankl, 1984)—Their world view; based on past experiences and beliefs
 Goals are source of meaning (Emmons, 2004)
 Hope can be a component
 Asking questions aimed at giving an experience purpose and placing it into the context of the a total life pattern by reworking past meanings and looking for meaning in the current situation. (O’Connor, et al, 1990)

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 Jim, et al (2006): 167 breast cancer patients shortly after surgical intervention
 COPE Inventory and MiLS
 Outcomes: Women with more depressive symptoms at diagnosis <meaning
 Total meaning score was predicted by frequent active coping and social support and more spiritual coping
 More use of positive reinterpretation showed higher scores on life purpose and goals
 Yalom, 1980-Behaviors that provide a sense of purpose: altruism, leaving the world a better place, serving others, creativity, and self-actualization

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 Coping with physical symptoms
 Improved sense of well being
 A majority of patients state that they consider attention to spiritual care by their health care team important. (Kang, et al. 2012 and Balboni, et al. 2013)
 Patients who received less spiritual care than they desired, reported more depression and less meaning in life and less peace. (Pearce, et al. 2012)

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Existential Questioning:
-Occurs in the first 100 days of diagnosis
- Recurs with relapse or with terminal prognosis
- Leads to a search for meaning
Persons who identified themselves as non-religious, may begin searching for spiritual comfort and answers which can lead to peace.

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 Willingness-Being open to “going there”
 Observation- “Seeing there”-clues to patient’s spiritual inclinations
 Presence- “Being there”—active listening, silence, touch
 Trust-”connecting there” -Imperative-nurse-patient relationship—invitation-protection of patient’s dignity-involves one human responding to another with understanding, openness and warmth—touch can be component.

ASSESS YOURSELF
Consider your own world view
Values
Why you do what you do
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Who you are
Beliefs
Passions
What brings you joy

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 Knowing your own spirituality
 Being willing to provide spiritual care
 Ask the pertinent questions
 What gives your life meaning? What is your place in the world?
 What do you hope for?
 What is most important in my life?
 Who can I count on?
 What coping mechanisms have been helpful when you have faced tough situations
 What role does spirituality play in your life?

 Labyrinths
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 Concept: Simplistic spiritual practice of a winding path from the perimeter to the center and then back again. There is no wrong way to walk a labyrinth.
Differs from mazes. Can’t get lost or hit a dead end.
Purpose is not to “get somewhere” but to find meaning or answers in life.
 3 phases: Release (walk inward) release outside stresses; Receive (center) Listening to the spirit; Return
(integrating the experience on the walk out)

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 Benefits: hypothetically reduces anxiety, promotes well being, decrease HR, decrease respirations and lower BP.
 How to use it: Walk in: Sacred dance-walk at own pace, focus on breathing and releasing stress. May repeat mantra, scripture, prayer. Intention may be spiritual growth, grief work, problem solving.
Center: Receive-quiet the spirit and listen. Feel.
Recenter. Stay as long as needed.

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 Return: Reflect on the walk out. Write about the experience to remember. What was learned?
 How to use in daily care: Finger labyrinths
 Use non-dominant hand to trace path. Helps with space. Easy to provide for patients.

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 Mindfulness based Meditation-decrease sympathetic and increase parasympathetic; affects neurotransmitters and neuromodulators- (Chaoul, et al, 2014)
 Considered a wakeful hypometabolic physiologic statealert, focused, but relaxed.
 Control over thoughts and breathing
 Lectio Devina: Divine reading—focus on meditation/listening with the heart. Reading slowly is the first part. Mediatatio-second part. Taking time to think about something, to savor it, turn it over at different angles. Step 3 is Oratio-starting a dialogue about the reading within your spirit which leads to Contemplatiosimply being with the experience. The silence.

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 Mantras: “You are stronger than you think.” “I can, I will.” “Today I choose joy and I choose hope.”
 Visualization: Visualizing what is going on in their body-ie stem cells growing and beginning to fight infection
 Scriptures: Be still and know I am God
Be still and know I am
Be still and know
Be still
Be

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 Benefits of emotional expression through writing about significant distressful events. Increased QOL; decreased emotional distress.
 Most research through breast cancer
 Cognitive changes-helping people understand themselves better; looking at things in a new way
 Enables people to tell their stories, in their way, from their perspective—a way to bear witness to a situation, a way to leave a legacy, a means of reflection

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 Guided writing: Research suggests having patients write specifically about their thoughts and feelings about their disease or specific concepts of spirituality like hope
 Gives guidance and purpose
 Stream of consciousness: Writing daily about whatever is pertinent that day
 Allows free flow of thought; may send a patient down a path that needs to be considered but may subconsciously have been hidden
 No wrong way to journal
 Passion Journey—In the wilderness (diagnosis), Good
Friday (treatment), In the Tomb (recovery), Easter Sunday
(reflections on lessons learned)

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 Legacy is a means of passing on the essence of one’s self, their values and beliefs, who they are.
 The process of passing one’s self through generations, creating continuity from the past through the present to the future (Hunter and Rowles, 2005)
 Legacy leaving is a method of leaving something behind after death that will live on and helps patients to make meaning out of the end of life journey. (Hunter, 2008)
 Legacy is dependent on relationships-to create it, transform it, and allow it to be passed on.
 Legacy can be conscious or unconscious; we share things through life, thus leaving a legacy—may help patients to realize this in life review

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 Examples: Taped narratives, written letters, videos, created memorabilia
 How to make it work
 Ask the questions (what is meaningful) and suggest potential ways to leave a legacy
 Have necessary items on hand

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 Bailey (1997)showed benefits of being creative during illness by fulfilling a basic human need to be creative, making truth more real, having the ability to experience joy.
 Lane’s study (2005)showed patients describing their creative process as a transformative spiritual experience, being connected more deeply within themselves, and finding a deeper love and compassion within.
 Also restores identity, dignity, and helps patients express their own spiritual state.
 Patient moves from passive to active state in creating-reinforces ability to choose life and spiritual growth until the last breath.
 Arts provide an additional language to express themselves
 Showed a decrease in depression, increased energy, decreased anxiety and increased resilience.

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 Can reduce pain, improve mood, and enhance communication
 Example: Spirituals –Created by unknown black bards for the community to express the community sorrow, pain but within those songs is always a hint of hope

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 Means of self-expression
 Free flowing verse
 Rhyme
 Sound poems- Short poems written with words that capture sounds; clack, clump, plop, grrr, whir, sniffle, cachunk. Idea is to enable the reader to experience an event through sounds alone.
 Acrostics- Word poems---one word written vertically with each letter the beginning letter for that verse. Topic should be based on the vertical word, usually free verse without rhymes.

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 Patients valued art in hospital rooms, particularly that of nature, landscapes (Nanda, Eisen, And
Baladandauthapani, 2008)
 Photographic art can distract people from noxious situation and relieve mental fatigue (Cimprich, 1993,
Diette et al, 2003)
 Can be used as a means of legacy leaving
 Helped survivors find identity beyond “survivor” title
 Ask patients what creative outlet they had prior to being sick and use that media

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A form of modern dance in which the movements depict an emotion, or tell a story
Translates emotions, human conditions into movement
Can provide insight into cultures based on movement and rhythms
As with any artistic expression, it is a portrayal of human experience and perception and each person has their own unique manifestations of this expression

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Physical movement aids in releasing endorphins to increase a sense of well-being—leads to a state of exhilaration in the quest for freedom of spirit
Offers awareness and control of the body, mind, and spirit
Provides means of releasing tension/stress
Forces us to live in the moment and allow the inner emotions to take over and unfold in movement

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ANYONE!!!
Everyone has an internal rhythm
Everyone has emotions
Our lives are made up of stories spliced together
We naturally yearn to share those stories in order to be understood as humans

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Use imagination and invention for self expression
Live in the moment—consider how music makes you feel, what story you want to tell
Abandon concern over what it looks like to others-if it is conveying your unique emotions it is correct!

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 Nature can be a source of spirituality for some.
 Sensory impressions of nature shown to improve well being (Benzien et al, 2000)
 Feeding the birds
 Example: Kristi’s epiphany
 Sunsets, Mountain vistas
 Pet therapy
 Has been noted as symbols of hope

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 Balboni et al –Cancer patient (71%), RNs (83%) and physicians (65%) believed that patient/practitioner prayer was appropriate.
 Pre-existing relationship, knowledge of patient’s openness
 Sarge: Blessing of the stem cells
 Blessing of the hands as self care for staff

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 Sinclair et al (2009)-Spiritual care programs that were most successful were centrally located, reported and provided guidance to senior leaders, and reflected a multi-faith approach.
 Space
 Resources-multi-disciplines (rec therapy, music therapy, art therapy, pet therapy, chaplaincy)

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 Baptist-Bible Belt-Believers Baptism, Lord’s supper, prayer meetings.
 Catholicism-infant baptism, confirmation, pray the rosary, lighting of candles, last rites
 Buddhist-Buddha-teacher; Karma/reincaration: ultimate goal is enlightenment, peace and quiet are essential
 Hindu-no true definition; practice takes precedent over theory. Strong interest in diet. Aversion to contact with blood, urine, dead bodies, feces.
Diseases may be caused by evil eye, curses, etc. Help may be found with mantras or divine intervention
 Jehovah witness-rejection of blood transfusions; cautioned against BMT; organ transplants are individual decisions; death experienced as sleep
 Islam-One God; Muhammad-prophet: peace-receive illness/death with patience, meditation, and prayer: reading Quran brings peace and prayer is essential component

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 Offending/Being non-inclusive/Company policy
 Being untrue to your own beliefs
 Time/Space-Pearce (2009) and Rassouli, et al (2015)
Spiritual care ranked 3 rd lowest on scale; requires time to build trust relationship—Balboni et al (2014) also endorsed that lack of time and space were the main barriers to providing spiritual care.
 Support/Education: Needs to be addressed-if not, will be neglected in practice. Management also needs to provide the support to allow nurses to provide spiritual care

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 Consider one change you would like to see happen in your setting
 Brainstorm ideas for how to create some ways for spiritual care to take place
 What would be needed for that to happen?

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 May we seek each day to touch a spirit
 May we hold a hand with compassion.
 May we listen to our patient’s hearts, and only sometimes use a stethoscope.
 May we hear the unspoken words
 May we see the whole person.
 May we seek to be bearers of peace, joy, and love.
 May we find in ourselves those same things.
 May we be worthy of trust, and recognize the need to be present and when time needs to stand still, may it do so.
 May we leave here today with a renewed sense of spirit and may we never see a day as wasted or worthless for all days are a gift.
May we take and give love in each day we live.
 May we really live each day.

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 Leadership for Spirituality SIG
 Jill Burleson, Coordinator
 burle005@mc.duke.edu
 BJ Lee, Coordinator elect
 bjleenp@yahoo.com
 Karen Skalla, Ex-Officio
 Karen.a.skalla@hitchcock.org
 SIG Virtual Community Web Administrator
 Laura Fennimore
 fennimorela@upmc.edu

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 Newsletter Editor
 Barbara Reynolds, RN, BSN
 BREYNOLDS@hvhc.org
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 The Spiritual Care SIG is celebrating their 25th Anniversary in 2015. The
SPR SIG was approved in June of 1990 with 31 charter members . There have been many SPR SIG leaders who contributed to our history:
 Martha Highfield PhD RN
 Madalon Amenta RN
 Elizabeth Taylor PHD RN
 Katherine Gallia PhD RN
 Martha Highfield PhD RN
 Judy Schreiber PhD RN
 Marilyn Halstead PhD
 Tami Borneman RN MSN CNS FPCN
 Karen Skalla MSN ARNP AOCN ®
 Katherine Gallia PhD RN
 Lara Gaston RN BSN
 Jill Burleson MSN APRN ANP AOCNP ®

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 Medical Missions
 Beginning a project with clinic nurses to focus on self-care/spirituality activities
 Attending CE events on Spirituality
 Poster for SIG at Congress 2014
 Hands on activities at poster for Congress 2014
 Dedication of Hands for Congress attendees 2014
 Over 100 participants

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 Support the exchange of information, experiences and ideas related both to spiritual care of the person with an actual or potential diagnosis of cancer and the spiritual care of his/her family.
 Foster the formulation of new ideas and knowledge related to spiritual care through dialogue and research.
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 Knowledge: Create educational materials to be distributed to all chapters
 Leadership: Promote/encourage members to be active in their workplaces through individual projects, to be active in ONS congress, to collaborate with other SIGs for educational sessions.
 Quality: Highlight any research projects throughout the SIG in newsletters/virtual community
 Technology: Updating Virtual Community
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 Have loosened the requirements for maintaining SIG status.
 Build on the strength of the SIG and focus on the sharing of information
 More of a community to allow for better collaboration

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 *Dedication of Hands Ceremony
 *Spiritual Self Care stations potentially combining with Complementary Therapies SIG
 *Education session
 *Poster specific for SIG

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