Table 1 Domains of High-Quality Pediatric Palliative and Hospice Care at Home (PPHC@Home)
Domains | Domain Definitions |
|---|---|
1. Access to care | PPHC@Home team supports the child and family through access to palliative and hospice services 24 hours a day, 7 days a week |
2. Caregiver support at the end of life | PPHC@Home team meets the spiritual, emotional, social, and cultural needs of family members at the end of life (for example, preparing parents and other family members for the child’s end of life) |
3. Communication at the end of life | PPHC@Home team communicates with the child and family to develop and carry out a care plan to manage actual or potential symptoms at the end of life |
4. Communication between family and care team | PPHC@Home team communicates with the child and family to ensure that the care provided meets the child’s and family’s preferences, goals, values, and needs |
5. Coordination of care | PPHC@Home team works to ensure that when the child transfers between healthcare settings and providers, that there is appropriate and thorough communication of clinical information and child/family goals, preferences, and values (for example, aligning needed in-home services, arranging for medical equipment) |
6. Continuity of care | PPHC@Home team works to ensure that the delivery of care is seamless across care settings and providers (for example, the same providers work with the family, providers across teams and organizations communicate regularly) |
7. Cultural aspects of care | PPHC@Home team respects the child’s and family’s cultural and language needs and preferences |
8. Ethical and legal aspects of care | Child/family goals, preferences, and choices are respected within the limits of state and federal law, current medical care standards, and professional practice standards. These goals/preferences/choices are also documented and shared with all professionals involved in the child’s care |
9. Knowledge and skills of care team providers | PPHC@Home team members have the appropriate education, training, and experience to provide high-quality in-home palliative and hospice care for seriously-ill children and families |
10. Physical aspects of care: Communication | PPHC@Home team provides information and education about treatments for the child’s pain and other physical symptoms (for example, fatigue, nausea, constipation) |
11. Physical aspects of care: Symptom management | PPHC@Home team assesses and manages the child’s pain and other physical symptoms, as well as any side effects of treatment, based on the best available medical evidence |
12. Practical aspects of care | PPHC@Home team supports the family through assistance and resources for navigating financial- and insurance-related issues related to the child’s care |
13. Psychological and emotional aspects of care: Child | PPHC@Home team assesses and manages the child’s psychological and emotional issues and needs (such as anxiety, depression, distress, coping, grief) based on the best available medical evidence |
14. Psychological and emotional aspects of care: Parent(s) | PPHC@Home team helps to assess and manage parents’ psychological and emotional issues and needs (such as anxiety, distress, coping, grief) |
15. Psychological and emotional aspects of care: Sibling(s) | PPHC@Home team helps to assess and manage the sibling(s)’ psychological and emotional issues and needs (such as anxiety, distress, coping, grief) |
16.Psychological and emotional aspects of care: Extended social network | PPHC@Home team helps to assess and manage psychological and emotional issues (such as distress, coping, grief) of the family’s greater familial and social community (e.g., extended family, friends, classmates) |
17. Relationship between family and care team | Relationship between PPHC@Home team and the family is built on respect, trust, and advocacy for the child’s and family’s needs |
18. Social aspects of care: Child | PPHC@Home team helps navigate the child’s social issues to meet child-family needs, promote child-family goals, and enhance child-family strengths and well-being (such as helping the child maintain and strengthen his/her social support network) |
19. Social aspects of care: Parent(s) | PPHC@Home team helps navigate parents’ social issues to meet child-family needs, promote child-family goals, and enhance child-family strengths and well-being (such as helping parents maintain and strengthen their social support network; helping parents develop strategies and access resources to balance caregiving, work, and family needs) |
20. Spiritual and religious aspects of care | PPHC@Home team helps support child/family’s religious and spiritual rituals or practices |