Cyclical, recurring, and potentially progressive pattern of pervasive sadness experienced (by a parent, caregiver, individual with chronic illness or disability) in response to continual loss, throughout the trajectory of an illness or disability

Expresses feeling that interferes with well-being

Overwhelming negative feelings

Sadness

Situational (Personal, Environmental)

Related to (NANDA-I approved)

Crisis in disability management

Crisis in illness management

Missed milestones

Missed opportunities

Related to the chronic loss of normalcy secondary to a child's or adult child's condition, such as:

Asperger syndrome

Autism

Severe scoliosis

Chronic psychiatric condition

Down syndrome

Mental retardation

Spina bifida

Sickle cell disease

Type I diabetes mellitus

HIV

Related to lifetime losses associated with infertility

Related to ongoing losses associated with a degenerative condition (e.g., multiple sclerosis, Alzheimer's disease)

Related to loss of loved one

Related to losses associated with caring for a child with a fatal illness

Individuals experiencing developmental crisis

Individuals experiencing loss of significant other

Individuals working in caregiver role for prolonged period of time

Chronic disability

Chronic diseases

AUTHOR'S NOTE

People living with chronic sorrow, live with a painful gap between who they have been and who they are now, of who they dreamt themselves to be and who they still long to be. Chronic sorrow is a normal, nonpathological state of pervasive, continuing, periodic, and resurgent sadness related to the ongoing losses associated with illness and disability; in this case, not loss of another, but loss of self (*Roos, 2002). One woman with Chronic Sorrow reported "Nobody wants to hear your chronic sadness" (Weingarten, 2012, p. 4). Chronic Fatigue Syndrome attacks your dignity, through the words of doctors, professionals, who call you lazy, or crazy . . . or worse. It destroys careers, dreams, erodes the spirit. It cuts the threads that hold relationships together. I think this is what was too much for me. As I watched the serial destruction of so many relationships that had been precious to me, a crack began to crawl across my heart. Through that crack leaked my love for life, my drive for life, my fight for life, and in its place grew an exhaustion deeper than bone.

Olchansky identified Chronic Sorrow in *1962. Chronic sorrow differs from grieving, which is time limited and results in adaptation to the loss. Chronic sorrow varies in intensity but persists as long as the individual with the disability or chronic condition lives (*Burke et al., 1992). Chronic sorrow can also accompany the loss of a child, with heightened sorrow as time passes and events of birthdays, graduations, and marriage are notably missing. Chronic Sorrow can also occur in an individual who suffers from a chronic disease that regularly impairs his or her ability to live a "normal life" (e.g., Chronic Fatigue Syndrome, paraplegia, AIDS, and sickle cell disease). Chronic sorrow does not mean that the families do not love or feel pride in their children. These feelings, and many other feelings, exist alongside the sadness. It is as if many threads are woven side by side, bright and dark, in the fabric of the parents/caregivers' lives (Rhode Island Department of Health, 2011, p. 22). Chronic Sorrow can also accompany divorce, infidelity, termination (occupation, professional failure).

Level 3 Advanced Focused Assessment (all nonacute settings)

Burke/NCRCS Chronic Sorrow Questionnaire (Caregiver Version) (*Burke, Hainsworth, Eakes, & Lindgren, 1992)

Introduction

I would like to ask you some questions about some of the thoughts and feelings you have experienced since _______________(name) died or was diagnosed with __________________ (condition).

I am interested in learning your point of view so that nurses can become more sensitive and helpful to people like yourself.

• How did you first learn that _____________ (name) had died or was diagnosed with___________ (condition)?
• Can you recall your feelings when you first learned about it? (May add: What went through your mind?)
• What was most helpful to you in adjusting to the event or news about _____________________?
• Was there anything in particular that happened that was not helpful? (If yes: Please give an example.)
• Thinking back to how you reacted at first to the news of _________________________'s condition, has there been a time since then when something happened and you had those same feelings of_________(use individual's words in his/her response to #2) all over again? (If yes, ask questions 7 to 30; if no, ask question 6.)
• What feelings do you have right now when you think about ____(name of person)________? (If feelings consistent with chronic sorrow are described, ask question > If not, go to question 14).
• Some caregivers say that certain events tend to bring up these feelings again. Were there other times when you had these feelings? (If yes: Can you tell me about some of these times?)
• How would you compare these later experiences to your feelings when you first learned of ___________________'s condition? a. Usually more intense b. Usually just as intense c. Usually less intense
• Were other people aware that you were having these feelings? (If yes: How did they know?)
• When you were experiencing those feelings, were any people particularly helpful? (If yes: Who were they? Can you recall what they did that helped you?)
• What people were least helpful? In what way?
• When a person gets to feeling really down about his/her loss or (name)___________________'s condition, what could he/she do to feel better?

The individual will be assisted in anticipating events that can trigger heightened sadness, as evidenced by the following indicators:

• Expresses sadness.
• Discusses the loss(es) periodically.

CARP'S CUES

The usual grieving process is linear in nature with a final goal of acceptance and adaptation (*Gordon, 2009). "Prolonged chronic grief or mourning results when adaptation is not made; it is considered an abnormal response" (Ibid). "These models of grief contrasted with *Olshansky's (*1962) theory, which described chronic sorrow as ongoing yet periodic, as well as normal" (Ibid). A review of findings on chronic sorrow suggests that mothers experience more intense chronic sorrow compared with fathers (Coughlin & Sethares, 2017). Healthcare crises and developmental milestones are potent triggers for resurgence of chronic sorrow (Ibid).

Level 3 Advanced Focused Interventions

Explain Chronic Sorrow

• Normal response
• Focus on loss of normalcy
• Not time limited
• Episodic
• Persists throughout life

Encourage to Share Feelings Since the Change (e.g., Birth of Child, Accident)

Refer to the box below for examples of helpful and nonhelpful responses.

R:By validating the parents' feelings, they are reassured that what they are experiencing is a normal response to a living grief (*Gordon, 2009). Nonhelpful responses dismiss the person's feelings.

R:Professionals learn to understand chronic sorrow as a natural response to a tragic situation in order to assist parents in achieving greater comfort living with and managing a child with a mental or physical disability. Families report that open, honest communication is beneficial (*Gordon, 2009). They need to know what to expect to help reduce life-span crises (*Eakes, 1995).

Promote Hopefulness (Hockenberry, Rodgers, & Wilson, 2018)

R:Healthcare professionals may project the situation as hopeless and may interpret parent expressions of optimism as maladaptive (*Griffin & Kearney, 2001; *Gordon, 2009).

R:Hopefulness is an internal quality that mobilizes humans into goal-directed action (Hockenberry, Rodgers, & Wilson, 2018).

• Advise of age-related health promotion needs.
• Provide anticipatory guidance for maturational stages (e.g., puberty).
• Discuss possible age-related self-care responsibilities.

Explore Activities That the Child and/or the Parent Enjoys Doing

R:Living with someone with a disability can include pain, suffering, and sorrow, but also joy, hope, and optimism (*Griffin & Kearney, 2001; *Gordon, 2009).

Acquire a Consult with a Play Therapist

R:Parents can receive "training in play therapy methods, and direct supervision from a play therapist" (*Gordon, 2009). Through play therapy, children learn to communicate with others, modify behaviors, and express feelings (*Gordon, 2009).

Convey an Interest of Each Individual and Family

R:Getting to know the family can help dispel stereotyping and gain an appreciation of "this family unit" (*Gordon, 2009).

• Provide siblings opportunities to share their feelings.

R:An empathetic presence that focuses on feelings can reduce feelings of isolation (*Eakes et al., 1998).

Explore Activities That Can Improve Coping on a Day-to-Day Basis, Such as (*Gordon, 2009):

• Access resources to learn more about the condition, e.g., from the library or Internet.
• Teach regular stress-reducing activities, e.g., exercising (yoga at home, walking, reading, crafts).
• Suggest keeping a journal.

R:"Journaling may be beneficial in allowing parents to recognize, vent, express, and/or process their feelings" (*Gordon, 2009).

• Help plan how to have "a night out."
• Stress the importance of maintaining support systems and friendships.

Prepare for Subsequent Crises over the Life Span with Compassionate Witnessing (Weingarten, 2012)

R:Compassionate witnessing entails empathic awareness of suffering followed by actions in the interests of the other person, not in the interest of relieving one's own distress as a witness to another's pain (Weingarten, 2012). Research has reported that healthcare crises and developmental milestones are potent triggers for resurgence of chronic sorrow (Coughlin & Sethares, 2017).

• Gently encourage the individual to share lost dreams or hopes.
• Assist the individual to identify developmental milestones that will intensify the loss of normalcy (e.g., school play, sports, prom, dating, marriage, grandchildren).
• Clarify that feelings will fluctuate (intense, diminished) over the years, but the sorrow will not disappear.
• Advise that these crises may feel like the first response to the "news."

R:Helpful strategies by healthcare providers include providing information, helping to procure respite and being empathetic and compassionate (Coughlin & Sethares, 2017).

Encourage Participation in Support Groups with Others Experiencing Chronic Sorrow

• Share the difficulties of the following (*Monsen, 1999):
  • Living worried
  • Treating the child like other children
  • Staying in the struggle

R:Parents can learn successful coping mechanisms and prevent social isolation from other parents undergoing a similar experience.

Researchers have reported mothers had a higher reported frequency of chronic sorrow than fathers (*Damrosch & Perry, 1989; *Hobdell, 2004).

Professional approaches that involved encouraging/allowing expressions of sadness and positive feedback on how they handled certain situations was appreciated (*Damrosch & Perry, 1989).

Acknowledge That Parent(s) Is the Child's Expert Caregiver (*Melnyk et al., 2001)

• Prepare the family for transition to another healthcare provider (e.g., child to adult providers).

Link the Family with Appropriate Services (e.g., Home Health, Respite Counselor)

• Differentiate between chronic sorrow and depression. If depression is suspected, parent(s) should be referred to a psychiatrist/psychiatric nurse practitioner for proper assessment and diagnosis (*Gordan, 2009).

R:Major depressive disorder is considered a depressed mood or diminished interest in almost all usual activity for at least 2 weeks. "Roos (*2002) believes depression is a complication related to stressors that influence people who experience chronic sorrow, while Hobdell (*2004) suggests depression is a component of chronic sorrow" (*Gordan, 2009).

Refer to Caregiver Role Strain for Additional Interventions.