Epilepsy is a neurological condition that causes recurrent seizures without an immediate cause. In Singapore, the incidence of newly-diagnosed epilepsy among young people aged between one month to 15 years is estimated to be 24 per 100,000 person-years.
Adolescents with epilepsy are met with challenges of living with the condition, and face a higher risk of poorer psychosocial outcomes compared to their peers – such as higher levels of behavioural problems including aggression and social withdrawal, lower quality of life and social competencies, and poorer academic achievement.
However, some adolescents experience success in managing the additional demands associated with their condition, and do not necessarily experience these poorer outcomes – these adolescents are described as resilient.
Resilience is often referred to as an individual’s capacity to recover from, adapt or remain strong in the face of adversity. It describes individuals who have good outcomes despite being considered high-risk for maladjustment such as a chronic medical condition, maintain competence despite threats to their well-being, or recover from trauma. Self-esteem and adaptation are considered indicators of resilience.
The availability of external resources, such as parental and family support, positive peer relationships and mentoring programmes, reduce the likelihood of poor outcomes among high-risk youth. These, amongst a wide range of protective factors, are thought to foster resilience in adolescents by shaping their strategies in managing stressful demands that arise from adversity, and mitigate against poor outcomes such as low self-esteem.
STUDY: THE SIGNIFICANCE OF FAMILY RESILIENCE
Seeking insights into the influence of the family on the psychosocial outcomes of adolescents with epilepsy; particularly the effects of family processes from the adolescent’s perspective, KK Women’s and Children’s Hospital (KKH) conducted a two-part study to examine key family processes that facilitate self-esteem.
Led by the Medical Social Work Department, from November 2013 to August 2014, self-reporting surveys were conducted with 152 patients aged between 13 and 16 years who were being seen by the Neurology Service after being diagnosed with epilepsy, and who were attending mainstream school.
Thereafter, face to face interviews were conducted with 15 of the study participants, exploring their experiences of living with epilepsy, and the influence of individual and family factors on their adaptation to the condition.
Findings indicated that the impact on family resilience increased with illness severity, and the presence of seizures despite taking medication was a significant risk factor that exerted demands on families. This, in turn, had a negative impact on young people’s self-esteem and resilience.
Several family processes were found to promote resilience in adolescents. These included shared family beliefs, family connectedness, and effective communication that supported collaborative problem-solving. Families which demonstrated these processes were able to manage the added demands and stress associated with epilepsy more effectively.
FAMILY BELIEFS: OUTLOOK, MASTERY AND CONTROL
Family beliefs about normality, mastery and control had a strong influence on how the study participants viewed themselves and coped with the demands of living with epilepsy. Adolescents with chronic illnesses often not only strive to be ‘normal’, they also want to be treated likewise. Being told they were just like others, and being encouraged to lead a normal life contributed toward their sense of normalcy and confidence in their abilities to carry on with life (Figure 1).
The study participants recognised actual differences when comparing themselves to their peers, such as those with and without illness or restrictions. Yet, most did not appraise themselves negatively and expressed that the presence of a difference was not synonymous to being different.
Those who had a positive outlook, and with a greater sense of mastery and control, demonstrated greater self-confidence and acceptance of their medical condition. Often, their beliefs mirrored that of their parents, which played a role in their positive views of themselves and their coping with the demands of living with epilepsy.
Study participants with higher self-esteem focused on their abilities, accepted that certain aspects of epilepsy were beyond their control, channelled their efforts toward fulfilling their responsibilities, such as adherence to medication, and actively pursued their interests. This in turn reinforced a personal sense of control over their lives (Figure 2).
These coping strategies, which were efforts to adapt to stress, were more suited to meeting the demands of uncontrollable aspects of chronic illness as opposed to primary control coping, such as problem-solving or emotional modulation that attempts to change the source of stress or reactions to it. Furthermore, it is likely that adolescents sustain or increase their self-esteem when they are successful in overcoming challenges.
FAMILY CONNECTEDNESS AND SUPPORT
Overall, the study participants’ narratives described how greater family cohesiveness buffered the effects of stress, and reinforced the importance of family connectedness in facilitating their positive experiences of support within their families. Examples that were cited included: engagement in shared activities, validation and acceptance of the adolescent’s feelings, providing and receiving both emotional and instrumental support in times of need, demonstrating affection and warmth, and successful management of family conflict.
These findings complement other studies on family processes, which show that family activities and rituals play a significant role in increasing adolescents’ perceptions of family cohesion and reducing family conflict. This, in turn, has a positive effect on their psychosocial outcomes.
Our findings add onto a growing body of evidence that greater family connectedness is associated with positive psychosocial outcomes among adolescents with chronic illnesses, such as greater quality of life and lower behavioural problems.
FAMILY COMMUNICATION AND SHARED DECISION-MAKING
In this study, communication within the family was discussed in the context of participation in leisure and social activities. It was found that family communication was a vital factor in the study participants’ adaptation to their condition. While parental control and overprotectiveness were perceived as barriers, study participants often engaged in negotiations through bargaining, reasoning and persuading to influence their parents’ decisions.
During adolescence, the relational dimensions of parent-child communication, such as power and identity, become more prominent as established patterns of interaction are renegotiated in order to meet new demands for adolescent autonomy.
Processes that were found to promote resilience included collaborative problem-solving and shared decision-making, and were characterised by family members’ openness to change and new solutions, and having room for negotiation and compromise. This allowed families to make decisions that considered family members’ varying needs, which led them to feel valued and, in turn, strengthened their relationships with one another.
Acknowledging the reality of power differentials within parent-child relationships, particularly within Asian families, and having the space to negotiate is critical to successful collaborative problem-solving. As reflected in participants’ experiences of positive and negative interactions, power differentials may be minimised though parents’ acknowledgement of their child’s needs.
These findings were similar to previous research among families of disabled children where the quality of family communication predicted higher levels of adaptation, and adolescents who reported openness of communication with their parents had greater parent-child relationship satisfaction and higher self-concept.
IMPLICATIONS FOR A FAMILY RESILIENCE-ORIENTED APPROACH TO PRACTICE
Adopting a family resilience framework provides social workers and other practitioners with a multi-systemic perspective when working with adolescents in strengthening their capacities to manage multiple demands arising from a chronic medical condition.
As existing literature suggests that most adolescents and families adapt successfully and do not necessarily have poorer outcomes compared to healthy peers, this group could benefit from universal-level interventions that address their psychosocial needs. For instance, family and patients with different chronic medical conditions who received psycho-education about family processes related with illnesses, reported improved quality of life.
Based on the present study’s findings, differing expectations, lack of clarity of roles and responsibilities are likely to result in family conflict, poorer medical and psychosocial outcomes. It is also essential to facilitate open communication where differing views are acknowledged and explored as it could potentially reduce socially imposed ‘barriers to doing’, such as parental control and restriction.
It would also be useful to include topics addressing adolescent autonomy, highlighting possible tensions between parent and child arising from conflicting demands. In addition, the findings also suggest that interventions should focus on ways to foster a stronger sense of connectedness between family members. Shared activities and rituals are likely to provide opportunities to enhance family cohesiveness, provide support and facilitate open communication between family members.
As culture influences how adolescents and their families cope with epilepsy and its associated stressors, it is essential to bear in mind how culturally specific beliefs and values influence key processes that promote positive outcomes when planning supportive interventions.
Dr Judith Chew, Master Medical Social Worker, Medical Social Work Department, KK Women’s and Children’s Hospital
Dr Judith Chew oversees the Medical Social Work Department at KKH in vital research studies of individual and family resilience, issues relating to women’s and children’s health, adolescence issues, child abuse and neglect, and young mothers in Singapore. In 2009, Dr Chew received a MSc in Evidence-based Social Intervention from the University of Oxford, United Kingdom and obtained a PhD in Social Work from the University of Bristol, United Kingdom in 2016.
Mr Muhammad Noor Latasa Bin Abdul Latiff, Medical Social Worker, Medical Social Work Department, KK Women’s and Children’s Hospital
Mr Muhammad Noor Latasa Bin Abdul Latiff graduated from the National University of Singapore with a Degree in Social Work, and has been a medical social worker with KKH for six years. Mr Noor provides assistance to patients and their families in various areas such as crisis intervention, as well as work with children with acute or chronic medical conditions, including those with neurological conditions.