Spirituality and Religion

Home > Topics > Spirituality and Religion

The prospect of a child’s suffering challenges our sense of what is fair. You may feel as if your life and the world as you knew it no longer make sense. Some caregivers—and some children—will find themselves struggling with questions of “why?” and these questions will challenge their beliefs. Others will feel strengthened, perhaps experiencing a new clearer sense of direction from a higher power. Spirituality is our need to feel purposeful, to create meaning, to find hope and express love, and to feel connection.

Your Team:

Spiritual Leader

An individual who leads and/or guides individuals or groups coping with life experience and challenges.

Chaplain

A member of the clergy who is responsible for the religious needs of an organization and/or its constituents.

Music Therapist

A trained person who uses music to address the physical, emotional, cognitive, and social needs of people.

Art Therapist

A trained person who uses art to address the physical, emotional, cognitive, and social needs of people.

Palliative Care Clinician

A specialist whose aim is to improve the quality of life of their patients over the course of their illness regardless of stage, by relieving pain and other symptoms of that illness.

A spiritual leader (priest, minister, rabbi, imam, etc.) can provide support in the context of a specific religious practice. A hospital chaplain can help you understand and bring your spiritual perspective to your child’s care team. A music or art therapist can provide opportunities for expression and creating meaning. A child-life specialist can provide support to your entire family, including the siblings. Palliative care clinicians can facilitate conversations about your values and beliefs developing your goals of care.

Spirituality and religion are related but different. Religions are associated with a particular system of faith and worship, doctrine, traditions, rites, and rituals. Many, but not all, religions include the concept of a higher power. Spirituality can be a part of religion; however, religion is not always a part of spirituality. Spirituality is the expression of the universal human need to make meaning and to create a purposeful life—with or without religion. As you accompany your child you will almost certainly experience the impulse to somehow make things “right.” But a devastating diagnosis demands recognition that some things cannot be explained or controlled, and that the future is uncertain.

It can be helpful to consider how your spiritual and/or religious beliefs and practices influence and inform how you advocate for things and make decisions. Sharing your beliefs and aspects of yourself and your child with your child’s team can help ensure that your child and family receive care that is consistent with your beliefs. Some parents may feel reluctant to talk about spirituality or are unsure of how or when to raise these topics. Palliative care and hospital chaplains can provide a safe place for considering and sharing with your child’s team what is important to you. This will allow others to be engaged and, as much as possible, to integrate spiritual sensitivity into aspects of your child’s care.

“I think it’s OK to have Why questions and not have perfect clarity.“

– Nate, parent of Joey

Spiritual Practice

It is common for parents to hear phrases like “everything happens for a reason” and “you are not given more than you can handle.” For some these statements are a comfort, and for others they are offensive and troubling. You may also encounter ideas and pressure from friends and family to adopt their spiritual practices. You are not obligated to hold or follow others’ beliefs. However, it may be helpful to find something that uplifts you and brings you comfort and peace. Your practice may include connecting with a faith tradition or valued community, the belief in a higher power, a sense of wonder at the beauty of the natural world, physical and/or mindfulness exercise, and/or personal expression through the arts.

Spirituality in Children

Children may also have spiritual questions and experience spiritual distress. Distress may be evident in your child’s behavior; they may appear anxious, angry or withdrawn. Their distress may affect their perceived pain level and contribute to difficulty in sleeping. It is important to explore this not just for your sick child, but also for their siblings. A spiritual advisor, child-life specialist or other member of your child’s team can assist you with determining how to help your child(ren) express their feelings and concerns.

You may wish to consider how to include your child or children in your faith or spiritual practices if this has not already been a part of your family life. Depending on your child’s needs, you may want to modify rituals or create new ones that focus on making memories. This may take a bit of creativity, but finding meaningful ways to engage your child spiritually can be beneficial.

The CPN guide “Spirituality and Caregiving in Pediatric Illness” explores these topics in greater depth.