Family adaptation following paediatric acquired brain injury

© 2017 Dr Lyndal Catherine HickeyObjective: This thesis aims to address the lack of evidence based research in interventions that promote family adaptation following paediatric acquired brain injury (ABI). It reports on the first social work clinical intervention trial designed to measure the effectiveness of a new family intervention titled ‘Family Forward’. This intervention was compared with ‘Usual Care’ social work practice to assess its efficacy in assisting families to make early adaptations during their child’s inpatient rehabilitation phase of care. Method: Participants were parents, caregivers and siblings of 47 children diagnosed with ABI and admitted to an inpatient rehabilitation service. Families were recruited prospectively and sequentially as their child was admitted to an inpatient rehabilitation ward at a statewide tertiary paediatric hospital. The ‘Usual Care’ group (n=22) recruitment, intervention and data collection was completed before the second phase of the intervention, ‘Family Forward’ (n=25) commenced. Patient characteristics were obtained from the child’s medical record. Families provided family demographic and psychosocial risk information using the Psychosocial Assessment Tool (PAT 2.0). Family adaptation outcomes were assessed using family functioning outcomes (Family Assessment Device – General Functioning: FAD-GF) and family management of the injured child’s care at home (Family Management Measure: FAMM). Family members’ appraisal of the child’s injury was also examined in relation to trauma, grief, emotional experience and injury perceptions (Impact of Event Scale – Revised: IES-R; Parent Experience of Childhood Illness: PECI; Brief Illness Perception Questionnaire: Brief-IPQ). Measures were completed at the child’s inpatient rehabilitation admission (pre-intervention), inpatient rehabilitation discharge (post-intervention) and six weeks post inpatient rehabilitation discharge (follow-up). Parents/caregivers and siblings also completed open-ended questions relating to the impact of the child’s injury on family relationships at follow-up. Social workers delivered the ‘Usual Care’ and ‘Family Forward’ interventions and completed the Social Work Activity Form (SWAF) measure at post-intervention and at follow-up. The SWAF measured the social work activity and the level of intensity of the interventions delivered to the families in the two groups. Results: Family adaptation outcomes (FAD-GF and FAMM) were similar for both groups at follow-up. The ‘Family Forward’ group had poorer family functioning pre-intervention (FAD-GF Family Forward mean = 1.626 SD = 0.391; Usual Care mean = 1.491 SD 0.394) and endured longer hospital admissions (Family Forward mean =56.4 days SD 46.1; Usual Care mean = 37.5 days SD 16.4) and inpatient rehabilitation admissions (Family Forward mean = 33.3 SD 29.0; Usual Care mean = 21.4 SD 13.5) than the Usual Care group. There were significant differences in relation to the social work activity and intensity of the interventions delivered to the two groups. The Family Forward group received more services in all areas of service delivery measured by the SWAF and there was an association between poorer family functioning and increased social work activity and level of intensity of the interventions delivered to this group. No significant group differences were found for family appraisal outcomes (IES-R, PECI and Brief IPQ) at any of the three time-points. Both groups reported more adaptive grief responses compared with the PECI normative sample. Trauma responses (IES-R) suggest adaptive family appraisal for both groups. However, the two groups continued to have depleted emotional resources (PECI scale) at follow-up. Parents and siblings also reflected on changes to family relationships at six weeks post discharge. Thematic analysis of free text identified themes common in both groups: ‘negative changes in sibling interactions’ and ‘sibling protectiveness of the injured child’. In addition to these themes, the families in the ‘Family Forward’ group described ‘increased expectation on sibling’; ‘family system challenges’; ‘balancing needs within the sibling subsystem’; and ‘adjustment to parenting’. Conclusions: As this is the first study of its kind, the results can begin to inform social work and rehabilitation clinicians alike about the early family adaptation experience and important foci for psychosocial interventions during a child’s inpatient rehabilitation