This section will provide information on:
- Why it’s important to assess the psychosocial status of the family and caregivers of a child living with chronic pain
- How to conduct a brief psychosocial assessment of the family and caregivers
- Recommendations for responding to identified needs for family members and caregivers
Evaluating Nestor's Mother
In addition to treating Nestor’s pain, Dr. Korones addressed Mrs. Lopez’s coping and recommended that she and her husband be evaluated by a Psychologist.
Later in the interview, he suggests that a Community Health Nurse make a home visit to discuss possible services that the family could use.
Mrs. Lopez agrees to following both recommendations.
The Importance of Family-Centered Care
Families of children with special health care needs who feel supported by their provider report:
- Fewer missed appointments
- Higher care satisfaction
- Easier access to care
- Better coordination of care
- Fewer ED visits
- Lower overall burden
Reference
Kuo DZ, Bird TM, Tilford JM. Associations of family-centered care with health care outcomes for children with special health care needs. Maternal Child Health J; 2011; 15(6): 794-805
How is Nestor's Family Coping?
We Need to Ask: How is Nestor’s Family Coping?
What we know so far:
- Nestor lives with his family
- Mother stays home to care for him
- Father works extra hours to cover additional expenses
- Siblings are in school
- Nestor rarely leaves home and the family is therefore unable to travel and has minimal socialization outside of home
- Home health aide visits monthly
Nestor's Parents Meet With a Clinical Psychologist
Screening Tools
Screening tools can help: Family Adjustment to Childhood Disability (FACD) Measure
In your view, what consequences have resulted from having a child with a disability in your family?
Please answer using the following choices:
- Not at all
- To a mild degree
- To a moderate degree
- To a substantial degree
FACD Items
- There have been extraordinary time demands created in looking after the needs of the disabled child.
- There has been unwelcome disruption to “normal” family routines.
- The experience has brought us closer to God.
- It has led to additional financial costs.
- Having a disabled child has led to an improved relationship with my spouse.
- It has led to limitations in social contacts outside the home.
- The experience has made us come to terms with what should be valued in life
- Chronic stress in the family has been a consequence.
- We have had to postpone or cancel major holidays.
- It has led to a reduction in time parents could spend with their friends.
- The child’s disability has led to positive personal development in mother and/or father.
- Because of the situation, parents have hesitated to phone friends and acquaintances.
- The situation has led to tension with spouse.
- Because of the circumstances of the child’s disability, there has been a postponement of major purchases.
- Raising a disabled child has made life more meaningful for family members.
FACD Scoring
- Two subscales
- Positive
- Negative
- Total score
Both Sandra and Eddie had elevated positive and negative subscale scores, suggesting high rewards and high costs associated with Nestor’s care.
When a Screen Suggests Some Concerns, a Clinical Interview is Indicated
- Demonstrates appreciation and empathy for the family’s experience
- Provides opportunity to assess unmet needs which might interfere with their own well-being and their capacity to care for their child
- Allows for facilitation of referrals for additional support as needed
What Information about the Family is Important to Assess?
- Describe roles and how family members get along
- How does each family member feel about the child with chronic pain
- How does the family try to meet the child’s health care needs
Assess Rewards and Challenges
Important to acknowledge there are rewards as well as challenges associated with their child.
- Ask first about the perceived rewards of living with a child with chronic pain
- Ask second about the perceived challenges of having a child with chronic pain
Reference
Trute B, Heibert-Murphy D. Family adjustment to childhood developmental disability: A measure of parent appraisal of family impacts. 2002; J Pediatr Psychol; 27(3):271-280
Dr. Poleshuck Assesses Nestor's Mother
Dr. Poleschuck asks Nestor's mother about her experience as Nestor's caretaker.
What else about the Family is Important to Assess?
- How does the family make meaning out of living with a child with chronic pain?
- Spirituality
- Culture
- What supports does the family have, and do they adequately utilize their supports?
- How is the couple’s relationship?
- How are the other children in the family doing and how do the parents try to meet their needs?
- Do the caregivers engage in self-care activities?
How Nestor's Family Makes Meaning Out Of Living With a Child with Chronic Pain
What Supports Can Nestor's Family Access? Can They Take Advantage of Them?
How Is the Relationship Between Nestor's Parents?
How Are the Other Children in the Family Doing?
Do the Caregivers Engage in Self-Care Activities?
Recommendations to Consider for Family Members and Caregivers
- Normalizing the challenges
- Education regarding need for self-care and accepting help from others
- Increasing support as needed
- Support groups (in person or on-line)
- Reaching out to friends/community/family
- Accessing community resources (respite care;
- nursing services, etc.)
- Psychotherapy
- Follow-up to check in and see how they are doing
Summary
- Caregiving for a child with chronic pain can be both stressful and rewarding
- Family centered care improves health outcomes and family satisfaction
- Screening tools and clinical interviews allow for opportunities to assess and support the family
