Findings on the impact of treatment for childhood acute lymphoblastic leukaemia on family relationships

Abstract

Paediatric acute lymphoblastic leukaemia (ALL) has provided a landmark in cancer therapy as the first disseminated and otherwise lethal malignancy to be curable in the majority of patients. Although the success rate is high, this benefit is achieved through a long, invasive and very arduous treatment process. The experience of undergoing such intensive treatments affects not only the child, but the entire family. To date, however, psychosocial research is only beginning to describe the depth and breadth of the impact on families of this experience. This paper presents findings from a recent qualitative study of families coping with the initial stage (induction remission) of treatment for childhood ALL. The findings indicate that the experience is so profoundly disturbing and disruptive that it challenges the families' sense of normalcy and stability. These findings provide evidence of significant hardship and stress, with the consequent indication of the need for social work support. Above all, such families need to hear the comforting message from social workers that what they are experiencing is normal under the circumstances. Along with practical assistance, they need reassurance about the intensity of feelings they will experience and an affirmation of the difficulty of the challenges they face.

Impacto psicossocial do câncer pediátrico para pais: revisão da literatura

“…In general, the treatment of childhood cancer negatively impacts the social and professional routines of parents, often requiring them to leave their jobs and give priority to treatment (Björk et al, 2005;Earle, Clarke, Eiser, & Sheppard, 2006;Kerr, Harrison, Medves, & Tranmer, 2004;Ljungman et al, 2003;McGrath, 2001;Steffen & Castoldi, 2006;Young et al, 2002). Attention totally focused on a child may lead to marital conflict, impair communication and/or the self-care of parents (Costa & Lima, 2002;James et al, 2002;Steffen & Castoldi, 2006).…”

“…Mothers usually assume the role of primary caregiver and become emotionally involved while the fathers act as providers and tend to distance themselves emotionally from the situation (F. A. C. Silva, Andrade, Barbosa, Hoffmann, & Macedo, 2009;Svavarsdottir, 2005a). The challenges for the mothers are mainly related to decision-making, administration of medication, promotion of comfort and support, planning of family activities, handling the children's behavioral problems, paying attention to intercurrences, and supervising routine responsibilities (McGrath, 2001;Svavarsdottir, 2005a;Yeh, 2002). Fathers face conflict between working and staying in the hospital, in addition to the demand to provide emotional support to the wife and children (McGrath, 2001;Svavarsdottir, 2005a).…”

“…The challenges for the mothers are mainly related to decision-making, administration of medication, promotion of comfort and support, planning of family activities, handling the children's behavioral problems, paying attention to intercurrences, and supervising routine responsibilities (McGrath, 2001;Svavarsdottir, 2005a;Yeh, 2002). Fathers face conflict between working and staying in the hospital, in addition to the demand to provide emotional support to the wife and children (McGrath, 2001;Svavarsdottir, 2005a). Cultural gender roles may influence the manifestation of feelings, fears, and expectations between parents (Brody & Simmons, 2007).…”

“…Difficulties for the patient's parents include fear of relapse, anxiety, the need to assimilate information received, care provided to healthy children, attempts to adapt to the new health condition, provide care in the event of side effects, and care provided for intercurrences, among other situations, which harm the family's quality of life (Beck & Lopes, 2007a, 2007bBjörk, Wiebe, & Hallström, 2005;Clarke, Fletcher, & Schneider, 2005;Eiser & Eiser, 2007;Klassen et al, 2007;McGrath, 2001).…”

Young Siblings of Children with Cancer Deserve Personalized Care

“…Often, healthy siblings undergo feelings of loss, fear, suffering, uncertainty, loneliness, jealousy, anger and guilt [13][14][15]. Woodgate [16] during an interview to siblings of patient with cancer found an "enduring sadness" that didn't have a clinical relevance [17] but it is a predisposing factor to the development of anxiety and depression, which are disorders more frequent in this sample [18].…”