Table 2:

Antecedents of Parent Empowerment

Antecedents of Empowerment: How do we promote empowerment?
Antecedent	Antecedents → Empowerment	Lack of Antecedent/Barrier → Disempowerment
PARENT-PROVIDER RELATIONSHIP
Communication/Being Heard	Honest, attentive communication [20] Being heard or listened to [20, 25] Communication congruence with needs (face to face, written, email) [20] Interpersonal processes of care communication [40]	Provider insensitivity in where information was shared and way information was shared [25] Lack of communication with clinical staff [42]
Trust	Open communication between providers and parents helps to build trust [26] Trust in professionals [26]
Continuity of care	Continuity of care [26]
Equal member of team	Treated as an equal [40, 41]	Disempowering when unable to engage in health care of children alongside clinicians [25]
CARE PROCESSES
Shared decision making	Shared decision making between parents and professionals [26] [40] Making deliberate choices and having these choices accepted by providers [23] Making decisions together with clinical providers [43]	Exclusion from decision making [41, 43, 45] Passive observer in health care system [25]
Shared Goals	Establishing realistic and shared goals [26] Provider supporting parent-set involvement in goal setting [20] Early conversation about advanced care planning [44]	Different expectations between professionals and parents [26]
Family-centered Care	Family-centered care [29]
ALIGNMENT OF CURRENT MEDICAL CARE WITH NEEDS
Right-fit care/Meeting medical needs	Finding the right health care resource [24, 52] Inadequate services may lead to increased action to improve access [21]
Medical care in the home	Neonatal home care [45] Home-based caregiving [25]
Symptom Management	Observed improvements in physical and emotional symptoms [22]
ALIGNMENT OF CURRENT COMMUNITY SERVICES WITH NEEDS
Access to community services	Access to adequate information about community services [43] Assistance from a developmental support center [52]
RECEIVING INFORMATIONAL AND EMOTIONAL SUPPORT
Receiving information/education	Gaining information and knowledge on child’s health, diagnosis, therapy, and evidenced-based health [16, 24, 20, 46, 22, 29, 14]	Lack of information [47] Overwhelmed with advice and instruction [41] Unanswered questions and unmet needs [25]
Being supported in providing daily care/therapy	Readiness to accept care of child [26] Promoting role as care provider [26, 45] Supported parent-set involvement in therapy [20, 14, 38] Practicing new parenting skills in relation to child’s therapy [24] Use of discharge planner documents and competency tools [26]
Receiving emotional support	Supporting emotional needs [16, 48] Presence of supporting professional [26] Being offered hope [25]
Receiving Peer Support	Informal parent-to-parent support [16, 49] Formalized peer parent advocate [18, 32, 47, 50] A sense of solidarity [22] Exploring their journey and experiences with other parents [24]	Family empowerment and quality of life were not significantly associated with social support [36]
BUILDING PERSONAL CAPACITY AND NARRATIVE
Processing the Journey/Narrative Development	Constructing a meaningful narrative [51] Passage of time from chaotic/stressful medical experience [45] Reflection on evolution of having a child to being a parent [45]
Redefining parenthood/new normal	Acceptance of new normal [17, 25] Establish independent parenthood [45] Assuming expert parent role and adapt with child’s symptoms [16, 45] Learning to adapt parenting style in presence in child’s symptoms [24, 52]
Having perceived Influence	Perceived influence [43] Experiencing positive results of their own choices [23] Having choices accepted by professionals [23]	Loss of control & certainty [17]
Building coping strategies	Discovering personal strengths and resilience/coping strategies [16] Celebrating the positives [25] “Parents’ use of positive coping strategies to aid their own adaptation.” [53] Problem solving skills [52]	Expected but not enabled to cope [25]
Develop identify/role as advocate	Advocating, educating, and informing others about disease [35] Support for role as advocate [45] Participating in research [38]