父母親韌力與韌性──以照顧青少年時期中途致殘子女為例

Parental Resilience: Parenting Children with Acquired Disabilities throughout Adolescence

本研究主要目的在探討當子女在青少年時期遭逢意外而致殘，支撐父母親長時間投入子女照顧與復健過程之韌性與韌力內涵。採敘說研究方法，以立意取樣深度訪談一對育有青少年時期中途致殘子女的父母，理解他們在照顧子女過程中的生活適應。研究結果發現，青少年時期中途致殘子女之父母照顧者的韌性歷程包含舐犢之愛是一切的基礎、捍衛核心家庭的界限、夫妻關係緊密並協力分工、改善親子互動且提升凝聚力、愛子之計深謀且遠慮，以及尋求更多資源並超前佈署子女生涯等六個階段。父母照顧者發展之關鍵韌力共六項，行動轉運觀：認命卻不認輸的底蘊、相信我能觀：勇敢果決的堅持信念、全然奉獻觀：具體行動與合作的情操、轉化意義觀：賦予逆境積極的正向性、小我成就觀：問題解決與目標導向的思維，以及任重道遠觀：拖著疲累且耗竭的身心繼續前行。最後，根據研究結果進行討論並提出建議，供未來實務工作與相關研究參考。

This study investigated the development of resilience in parents who are caring for children with disabilities resulting from accidents during adolescence and who are undergoing rehabilitation. In addition, this study examined the concept of resiliency in the context of parental caregiving for these children. Resilience refers to the process of positively adapting through adversity, whereas resiliency refers to the ability to positively adapt in the face of adversity and multiple risks. Adolescence is a critical period in which individuals explore their own identity and seek recognition from others. Teenagers who experience disability face overwhelming challenges, such as those related to interpersonal connections, psychoemotional well-being, and self-identification. If a child becomes disabled in an accident, their parents must continually make critical medical decisions and cope with emergencies. They may neglect their self-care and social relationships and even change their occupation because of the pressures of caregiving. However, some parents learn to cope with adversity, grief, and stress and can adjust to their new lifestyle. Through the process of resilience, they can develop resiliency, which corresponds with assuming the long-term responsibilities of caring for a child with a disability.
This study employed purposive sampling and in-depth interviews with the parents of two children who became disabled during adolescence. The interviews aimed to understand the parents' life adjustments in the aftermath of their children's traumatic accident. Each parent participated in two in-depth interviews, with each session lasting 2 hours. The father was employed as a mailman at the time of the accident, and he applied for early retirement to care for his children. The mother was a housewife who had resigned from her job after marriage. They had three children; the oldest child was a boy, the middle child was a girl, and the youngest child was a boy. The middle and youngest children were in a traffic accident 18 years prior to the parents' participation when the children were traveling home from school. They had severe brain injuries and were unable to talk or walk. The middle child was in ninth grade and the youngest child was in sixth grade when the tragedy occurred. Despite undergoing multiple surgeries and rehabilitation, the children had mild to medium levels of intellectual and physical disabilities. Their emotional responses and expressions were also affected. However, regardless of these challenges, they successfully completed college education, found employment, and even earned the Presidential Education Award.
The interview outline was based on the process concept of Patterson and Kelleher (2005). A semistructured interview was employed to examine the parental caregivers' resilience and resiliency and parent-child interaction. A literature review revealed that resilience and resiliency are mutually affected traits and experiences. Therefore, this study divided the outline into two parts: interactions among family members during the process of caregiving and the development of adaptive behaviors. The questions were classified by stage to analyze changes on the basis of a timeline: Before, during, and after the accident. This study employed a narrative inquiry approach based on the "whole-content" style of narrative analysis proposed by Lieblich et al. (1998). Data analysis was implemented using the hermeneutic circle approach.
When their adolescent children became disabled after an accident, the parental caregivers chose to accept their new reality out of love for their children. The parents rapidly adjusted the traditional family structure, redefining it into a nuclear family framework and adopting a new lifestyle centered on a husband-wife subsystem. This enabled them to concentrate their energy on caring for their children. The couple agreed that their children were young and had acquired their disabilities through a tragic accident. They believed in their children's potential to recover and thus emphasized intensive rehabilitation. Therefore, one parent provided the children with companionship, whereas the other parent motivated the children to persevere in their rehabilitation. By fulfilling their respective roles, the parents could sense each other's intentions toward and sacrifices made for their children, which produced a profound bond of mutual support. The parental caregivers cherished the time spent with their children, which transformed the interactions between them and fostered a stronger family bond. The entire family united to navigate through the pain and upheaval caused by the accident.
During the children's process of rehabilitation and attending school, the parents experienced both successes and setbacks alongside their children. They persevered together despite facing formidable challenges, overcoming hardships, and making sacrifices when required. As their children grew, they dedicated themselves to locating and securing necessary resources and opportunities, regardless of distance. They also supported their children throughout college, guided them toward future employment opportunities, and collected information for financing plans. Therefore, the resilience-building process of these parental caregivers was concluded to have comprised six stages: Establishing a foundation based on the innate love between parents and children, preserving the boundary of the nuclear family, enhancing intimacy in the interparent relationship and working as a team, improving parent-child interaction and enhancing cohesion, planning thoughtfully for the children, and finding external resources to prepare for the children's careers.
The process of developing resilience yields the ability of resiliency. The parents reconciled themselves to the tragic incident and actively adapted to their new circumstances. They strived to assist their children in their recovery, with the belief that "actions can change fate." Both parents were "sure" that they could help their children stand on their own feet. Sharing the same goals, the parents embraced their specific responsibilities and collaborated to prioritize their children's rehabilitation despite the pressure and grief they experienced. Instead of immersing in grief, they chose to adopt an active and positive mindset toward the adversity. The parents quickly implemented various intensive and high-intensity rehabilitation plans. However, the parents gradually recognized that they could not accompany their children for their entire lives. They began to "shrink" their direct involvement in their children's rehabilitation. They divided the rehabilitation process into several stages, establishing plans and identifying resources in a step-by-step and goal-oriented manner to accomplish their goals. They also had to consider their children's future careers. Despite feeling weary and exhausted, the parents persisted on the endless road of caregiving, actively seeking out information and resources that could help their children. The parents' resilience comprised six fundamental levels. First, there was a conviction that "action can make a difference," and parents act with the confidence that adversity is predestined but surmountable. Second, with the belief of "I can do it," parents became determined and perseverant. Third, parents were willing to "devote everything," reflecting their altruistic sentiments. Fourth, parents employed the "meaning transfer" strategy to reinterpret obstacles in a positive light. Fifth, a "sacrificing for the greater good" mindset propelled parents toward a problem-oriented or goal-directed approach. Last, parents persisted despite exhaustion, acknowledging their arduous journey with a metaphorical depiction of "the burden is heavy, and the road is long."
On the basis of its findings, his study offers several recommendations for counseling practitioners. Coherence in family relationships is indispensable in the process of developing resilience. Closeness between parents can ensure sharing of the workload, and harmony between generations can enhance family coherence, which in turn produces more positive energy to cope with adversity. In addition, counselors should consider both the development of parents' resiliency and their self-care, with the caregivers' needs not be ignored. Many parents tend to neglect their negative emotions when wholeheartedly caring for their children, which can result in the depletion of their physical and mental resources, an effect that is counterproductive to developing resiliency.