N 95 Nursing Care of Persons with Chronic Illness


Segment 1
Defining Illness

Segment 2
Illness Trajectory

Segment 3
Managing Uncertainty

Segment 4

Segment 5

Summary and Assessment





Segment Five:
Understanding how your cultural and spiritual values affect your illness, your trajectory, your uncertainty and your fatigue.


You have learned a lot about spirituality through your reading and discussion of The Spirit Catches You and You Fall Down. But, what exactly is meant by spirituality?

Truths About Spirituality

  1. Religion and spirituality are not the same.
  2. A person who does not engage in religious practices is still a spiritual being.
  3. Children do have spiritual thoughts.
  4. The expression of one's spirituality occurs in a variety of ways.
  5. There is spiritual comfort in practicing religious traditions.

So, What Is Spirituality?

Spirituality is both concrete and elusive. It is concrete in that it is often expressed through religious observances; it is elusive in that it encompasses far more than organized expressions of belief.

Spirituality is concerned with the way people live their lives.

Spirituality is concerned with questions about meaning; and, in particular, the meaning of one's own life. Spirituality also is an approach to life that regards all living creatures with reverence and awe. . .with the notion that all life is tied to some greater presence or meaning - more than the relevance of any one individual life.

Spirituality is the human dimension that transcends the biological, psychological and social aspects of living. It is the "agent" for the integration towards a person's identity and integrity. (Mauritzen, 1988).

Spirituality manifests itself as a state of "connectedness" -- to one's inner self, to one's neighbors, and for some persons, to one's supreme being. (Ley & Corless, 1988).

In theological discussions, spiritual refers to an inner religiosity, whereas religious refers to the behavioral expression of that inner reality. (Duncombe, 1986).

The White House Council on Aging says:

Defining Spirituality.  The 1971 White House Council on Aging defined spiritual concerns as The human need to deal with sociocultural deprivations, anxieties and fears, death and dying, personality integration, self-image, personal dignity, social alientation, and philosophy of life.  The breadth of this definition melds psychological considerations with those of the spiritual domain

McLennan (1999) states that the spiritual life is a process, not a resolution; a journey, and not a destination. At the stage of spiritual interdependence, individuals are open to dialogue between different traditions because they understand that truth is multidimensional.

Spiritual Well-being

What is of most interest in managing chronic illnesses is achieving a sense of spiritual well-being. Vaughn (1986) defines spiritual well-being as:

A sense of inner peace, compassion for others, reverence for life, and an attitude and appreciation of both unity and diversity.

It is this sense of inner peace - with oneself, one's loved one, one's environment, and the meaning and utility of one's life - that generates well-being. Some religious traditions would call this "being in a state of grace".

Johnson and Maas (1997) further define spiritual well-being as:

evidence of personal expressions of connectedness with self, others, higher power, all life, nature and the universe - that both transcend and empower the self.

Like all attributes, the development of spirituality occurs in stages. The following slide presents one view of the stages in spritual development:

Stages of Spiritual Development
  • Children: Magical view of life

  • First 2 years: Transition to a reality base

  • Dependence: Adolescence when the individual feels a personal relationship with God who loves the individual unconditionally and serves as an idealized parent

  • Independence: Late adolescence and young adulthood. Spirituality is found from within and spirituality and religiosity are differentiated

  • Interdependence: Later in adult life. Individuals "are able to read scriptures simultaneously at the literal, allegorical, conceptual and inspirational levels"

  • Unity: Few Adults achieve this final stage; "awareness of the oneness of all existence"
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At this point, you should have a fairly good grasp of both the concrete and elusive nature of the spiritual. . . and some assessment of your own spirituality; as well as of the Lee's.

A strong sense of spirituality can be very healing - even in death. Some individuals with chronic disease, and particularly at the end of their lives, are able to transcend their circumstances and achieve a harmony and integrity that actually enriches the quality of their lives. . .a moving beyond self that is associated with rising above crisis situations.

The following slide depicts elements of this tanscendence:

  • People acheive transcendence by:

    • Giving into the world creatively through family/significant others, occupation and creative works;

    • Experience the world through receptiveness to others and to the environment;

    • Adopting an attitude of acceptance when faced with a predicament such as an unchangeable situation.
TNEEL-NE.  Slide 14

Self-transcendence often is accompanied by a sense of feeling uplifted; a physical lightness, and relief of burden; a closeness to others and environment; and an acceptance of inescapable circumstances. (Mellors, et. a l., 1997). It is the type of spiritual peace and grace that we wish for all persons at life's end.

Spiritual Care

The role of the nurse is not merely to call the chaplain when a patient expresses religious and/or spiritual concerns (e.g., Why me? What is life all about anyway?) - rather the role of the professional nurse is to listen to the patient in order to help the patient assess how his or her needs might best be addressed.

Given your chronic illness, are you in spiritual distress? e.g., do you often have feelings of emptiness? Do you seem to have loss your purpose in life?

If you are in spiritual distress, its is often helpful to explore all of the following:

  • whom you might have wronged and how best to correct this;
  • how to become "close" once again to family and friends;
  • what you can continue to hope for; and
  • how you can continue to be true to your values.

It is also most helpful to have a non-judgmental listener as you express your anger, frustration and doubts. You're not looking for advice; just to know that you are not alone in this struggle to find meaning.

Betty's Work With Spirituality

One of your professors in this program, Dr. Betty Woodard (who teaches you leadership and issues) focused her research on the role of spirituality in maintaining well-being in rural NC women who are HIV positive. She titles her findings "God in control", and you are now directed to read her research report:

Woodard, E. K., Sowell, R. (2001). God in control. Clinical Nursing Research: An International Journal. 10 (3) 233-253. [ HSL link here]

Note how Dr. Betty (on pp. 245-6) reports that spiritual reliance and rituals were important in helping women cope with HIV infection, but for some women, reliance on spiritual approaches took the place of medical treatment. Does that latter approach sound like the Lees in The Spirit?

Spirituality is a powerful force in healing; but perhaps best "integrated' with the best of western medicine - and not as the "alternative". Health providers must create the "space" for persons to retain and use their spirituality to assist their healing. Note the strength obtained by the women who used their sense of spirituality to give them strength - even to counteract their uncertainty and fatigue.

It is also important to carefully note the accompanying commentary by Valerie Fleming. As she argues, a rural, African American, Christian spirituality will not fit all persons with chronic illness. Remember that all health care is culturally bound (generally by the culture of the dominant provider group); we must be sure that the care we give fits the population we serve. Consider how that might have helped the Lees and all Hmong.

Consider What Gives Meaning To Your Life

Share with your peers what gives meaning to your life. Return to your "group" and it's "discussion forum". Choose the forum: "My Life's Meaning".

The Role Of Spirituality In Health And Illness

Continuously re-assessing what gives meaning to your life, and even to illness and death will certainly help with the development of your new "biography" and may well help with symptom management, control of uncertainty and fatigue, and one's general sense of well-being.

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