Considerations for SDM in Specific Cohorts
| Children With . | Considerations . |
|---|---|
| Acquired and/or developmental disabilities | • Depending on age, etiology, and severity of the disability, families’ experiences in decision-making may be greatly different. |
| • Among families whose children have multiple congenital anomalies, decisions of great importance may have been made in the neonatal experience with little SDM. | |
| • Decisions often are required that address issues at hand but that have potential ramifications for the long-term. | |
| • Experiences in the past may well color the expectations for SDM in the future. | |
| • Inclusion of the child in the decision-making process is critical as he or she becomes cognitively aware and able to process options and priorities. | |
| Intellectual disabilities | • Depending on the child’s age and the severity of the intellectual disability, the young child is likely to be the passive recipient of the decisions made by others. |
| • Depending on age and cognitive and executive function skills of the child, his or her involvement in SDM may require additional time and assistance (child life services, social worker, etc). | |
| • “Preference assessment” techniques may be needed (aided by professionals in the intellectual disability field). | |
| • Previous experiences (especially in the medical arena) need to be considered in light of the child’s experiences, perceptions, and preferences. | |
| • Issues perceived traditionally as ethical dilemmas may be more frequent in this group. | |
| • Autonomy versus paternalism spectrum often shifts to the parents/caregivers/guardians. | |
| Both severe neurodevelopmental and significant intellectual disabilities | • The combination of both intellectual and developmental disabilities lends itself to more interventions that might be considered alternative or complementary or unproven. • Issues perceived as quality-of-life considerations may be spoken of more frequently by families and professionals. • In visiting with parents about values or priorities or goals, these may seemingly shift over time as the child ages. Periodically revisiting the futures planning goals (particularly when no major decision is being required) can help families address future decisions. |
| Intellectual/developmental disabilities and who have been placed into the state foster care system | • Becoming familiar with state regulations under the agency charged with serving these children can better inform decisions, both large and small. • When major decisions need to be made (DNR designation, surgeries deemed nonemergency, and others), the information above can allow legal and ethical decisions to be made without unduly burdening family, staff, or physicians. • Involvement of CASAs and/or a guardian ad litem; as the person designated to advocate for the best interest of individual with intellectual disability, this individual will need to be involved in the process of SDM. • Often, multiple professionals (physical health, mental health, social workers, agency staff, others) have key roles in the overall care of the child; an efficient mechanism for sharing information is critical to addressing the ongoing and recurring issues that require broad input for the best decision-making. |
| Children With . | Considerations . |
|---|---|
| Acquired and/or developmental disabilities | • Depending on age, etiology, and severity of the disability, families’ experiences in decision-making may be greatly different. |
| • Among families whose children have multiple congenital anomalies, decisions of great importance may have been made in the neonatal experience with little SDM. | |
| • Decisions often are required that address issues at hand but that have potential ramifications for the long-term. | |
| • Experiences in the past may well color the expectations for SDM in the future. | |
| • Inclusion of the child in the decision-making process is critical as he or she becomes cognitively aware and able to process options and priorities. | |
| Intellectual disabilities | • Depending on the child’s age and the severity of the intellectual disability, the young child is likely to be the passive recipient of the decisions made by others. |
| • Depending on age and cognitive and executive function skills of the child, his or her involvement in SDM may require additional time and assistance (child life services, social worker, etc). | |
| • “Preference assessment” techniques may be needed (aided by professionals in the intellectual disability field). | |
| • Previous experiences (especially in the medical arena) need to be considered in light of the child’s experiences, perceptions, and preferences. | |
| • Issues perceived traditionally as ethical dilemmas may be more frequent in this group. | |
| • Autonomy versus paternalism spectrum often shifts to the parents/caregivers/guardians. | |
| Both severe neurodevelopmental and significant intellectual disabilities | • The combination of both intellectual and developmental disabilities lends itself to more interventions that might be considered alternative or complementary or unproven. • Issues perceived as quality-of-life considerations may be spoken of more frequently by families and professionals. • In visiting with parents about values or priorities or goals, these may seemingly shift over time as the child ages. Periodically revisiting the futures planning goals (particularly when no major decision is being required) can help families address future decisions. |
| Intellectual/developmental disabilities and who have been placed into the state foster care system | • Becoming familiar with state regulations under the agency charged with serving these children can better inform decisions, both large and small. • When major decisions need to be made (DNR designation, surgeries deemed nonemergency, and others), the information above can allow legal and ethical decisions to be made without unduly burdening family, staff, or physicians. • Involvement of CASAs and/or a guardian ad litem; as the person designated to advocate for the best interest of individual with intellectual disability, this individual will need to be involved in the process of SDM. • Often, multiple professionals (physical health, mental health, social workers, agency staff, others) have key roles in the overall care of the child; an efficient mechanism for sharing information is critical to addressing the ongoing and recurring issues that require broad input for the best decision-making. |
CASA, court-appointed special advocate; DNR, do-not-resuscitate.