ESP 
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 Faith
ESP Share
Caring for a child with SNI will likely stir up all kinds of questions and feelings. Some caregivers will find themselves questioning their previously held beliefs and struggling with questions of “why?” Others will feel strengthened, perhaps experiencing a new clearer sense of direction from a higher power about how to move forward. Spirituality is our need to feel purposeful, to create meaning, to find hope and express love, and to feel connection. And it is not limited to adults: children, too, have a spiritual life. Thus, addressing spirituality can be an important aspect of tending to your child and family.
ESP Spirituality and Religion
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. It is an evolving personal journey that may be expressed through beliefs, traditions, and practices. There is no one way to experience the spiritual.
In thinking about your own spirituality, you may find these questions helpful:
- Where do you find strength?
- What beliefs, practices, traditions and/or rituals bring you peace or meaning?
- What experiences bring you closer to your spiritual self?
- How do you recharge or refuel when you are feeling spiritually depleted?
Traditional western medicine tends to separate the physical self from the spiritual self (although this is changing). As you navigate the medical system, it can be helpful to consider how your spiritual and/or religious beliefs and practices influence and inform your advocacy for your child and their care. Consider how these beliefs and practices affect your decision-making.
Conversations About Spirituality
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 works with your goals. 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. For example, you may find that collaborating with the team to plan goals of care through a spiritual lens will allow you to be more present through difficult times such as a significant baseline shift or a medical crisis.
Here are some suggested conversation starters for discussions about spiritual values:
- “My faith tradition is important to me and guides me in how I make decisions.”
- “I would like opportunities to speak with someone about my spiritual beliefs and values.”
- “I find spiritual support in my church/temple/community of friends/nature/art studio/etc.”
- “My spiritual advisor is someone I like to speak with to help me make decisions for myself, my family, my child.”
- “My spiritual practice is to pray/meditate/attend religious or community services or programs/exercise/paint/sing/play music/etc.”
ESP 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. As a loving parent, 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.
A spiritual practice—something that uplifts you and helps you find comfort and peace—can help create a narrative that makes sense of your experience. 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, and/or personal expression through the arts. Whatever the source, many people find that having some regular spiritual practice helps them cope.
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. It’s okay to let go of anything that doesn’t feel helpful, and to let family, friends, and clinicians know what feels supportive and in line with your spiritual beliefs. Doing so may be especially helpful at or near the time of diagnosis and at shifts in baseline.
Spirituality in Children
Children may also have spiritual questions and experience spiritual distress. Spiritual distress may be evident in your child’s behavior and may manifest as being 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 or other member of your child’s team can assist you with determining how to help your child express their feelings and concerns.
You may also 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. If being in nature is important, you might seek out parks or accessible trails or places near water. You may wish to attend religious services, in person or virtually. It may take a bit of creativity, but finding meaningful ways to engage your child spiritually can be beneficial.
