The “make or break” impact of family dynamics on psychological outcomes in focal epilepsy

Objective

Living with epilepsy can shape the dynamics of the whole family unit. The first objective of this study was to establish the reliability and validity of our purpose-built online family mapping tool: “Living with Epilepsy.” Our second objective was to identify distinct patterns of emotional closeness between family members (family typologies), and to explore (1) whether family typologies are shaped by epilepsy-related factors, and (2) which typologies confer optimal psychological outcomes to people with epilepsy.

Methods

Ninety-one adults with chronic epilepsy and their caregivers (n = 56) participated and 70 similarly aged healthy controls and 36 caregiver controls (N = 253). Purpose-built software assessed a range of epilepsy-specific psychosocial issues, including family mapping. Questionnaires validated for epilepsy evaluated mood and quality of life (QOL).

Results

The reliability and validity of the family mapping tool was established. Family maps revealed three typologies varying in emotional closeness, each with distinct patterns of healthy vs maladaptive family behavior: Extremely Close (32%), Close (54%), and Fractured (14%). There was no difference in the frequency of typology between epilepsy and control families (p > .05). Within the epilepsy cohort, however, patients with seizure onset in childhood largely belonged to the extreme typologies: Extremely Close (47%) or Fractured (42%). In comparison, those with adolescent or adult onset commonly belonged to the moderate typology: Close (53%). People with epilepsy from Extremely Close families reported significantly higher QOL (p = .013) and lower mood symptoms (p = .008) relative to other typologies; no such association was found for controls or caregivers (p > .05).

Significance

These findings suggest that adults whose epilepsy commenced in childhood are likely to have extreme family dynamics characterized by either being brought closer together or driven apart. Extremely close families appear highly adaptive for people with epilepsy, bringing benefits for mood and QOL not seen in their caregivers or controls. The results provide strong empirical support for the value of an emotionally supportive family when living with epilepsy and suggest that fostering healthy connections within epilepsy families can optimize long-term patient well-being.     

Clinical utility of a mHealth assisted intervention for activity modulation in chronic pain: The pilot implementation of pain ROADMAP

Background

Being able to successfully self-regulate one's activity levels is a key adaptation strategy for many people with chronic pain. This study aimed to explore the clinical utility of a mobile health platform (Pain ROADMAP) for assisting with the delivery of a tailored activity modulation intervention for people with persistent pain.

Methods

Twenty adults with chronic pain undertook 1-week monitoring intervals which involved wearing an Actigraph activity monitor and entering pain, opioid use, and activity participation data into a custom-made phone app. The Pain ROADMAP online portal integrated and analysed the data to detect activities that caused a severe pain exacerbation and provided summary statistics pertaining the data collected. As part of a 15-week treatment protocol, participants received feedback from three dispersed Pain ROADMAP monitoring periods. Treatment focused on adapting pain-provoking activities, gradually increase goal-related activity and optimizing routine.

Results

Results revealed good participant acceptability of monitoring procedures and reasonable adherence to both monitoring procedures and clinical follow-up appointments. Preliminary efficacy was established through clinically meaningful decreases in overactivity behaviour, pain variation, opioid use, depression, activity avoidance, and increases in productivity. No adverse outcomes were observed.

Conclusion

The results of this study provide initial support for the clinical utility of mHealth assisted activity modulation interventions that involve remote monitoring.

Significance

This is the first study to demonstrate how mHealth innovations that utilise ecological momentary assessment can be successfully integrated with wearable technologies to provide a tailored activity modulation intervention that is both highly valued by people with chronic pain and assists individuals to make constructive behavioural changes. Adaptions such as low costs sensors, increased customisability and gamification may be important for enhanced uptake, adherence and scalability.