Communication Issues Faced by Parents Who have a Child Diagnosed with Cancer

Abstract

Twenty-nine parents of children who had been diagnosed with various cancers were interviewed through long, semistructured interviews conducted via telephone by a mother whose daughter once had cancer. Parents usually began their narratives of the defining moments in the months, weeks, or days prior to the diagnosis. The authors report on parents' views about one of the defining moments in the stories. At the first level, we call this "communication issues" and include the following topics: communication at diagnosis, contradictions and confusion, getting the "right" amount of information, good and poor communication, feeling listened to, and errors in medical information. At another level, the way that parents talk about communications issues reflects an underlying paradox that parents whose children have cancer face: They are and feel responsible for their children, and yet they often lack knowledge, authority, and power in their dealings with the health care system and its medical care providers.

Cultural Aspects of the Puerto Rican Cancer Experience: The Mother as the Main Protagonist

“…Thus, we agree with Clarke and Fletcher's (2003) affirmation that cancer does not happen in a vacuum or in a world in which individual and family psychological reactions to diagnosis and disease are isolated from other contexts, particularly from the health care system represented by health care providers. In that sense, we believe that these groups of cancer survivors who have so many needs also have much to offer to the psycho-oncology field.…”

“…This research, based on what has been described by Clarke and Fletcher (2003) as the "pathology" model, has ascribed psychopathology to the parents by virtue of the fact that their child has been diagnosed with cancer. These authors also state that the significance of the process of diagnosis, the degree of impairment, the prognosis, the interaction with the medical care system; or socioeconomic variations such as income, education, marital and family structure, age of parents, age of children, culture, and ethnicity have been, relatively speaking, ignored.…”

Impacto psicossocial do câncer pediátrico para pais: revisão da literatura

“…Parents have their role extended in the context of pediatric care: they need to provide the emotional responses of the patient and siblings, moderate their own emotions, establish satisfactory communication within the medical-hospital context, adapt to family routines, deal with potential relapses, deal with expectations, care for the child's wellbeing, and pay attention to medication, handle intercurrences and side effects, establish protective care, and accompany the child on medical consultations, hospitalizations and for invasive exams (Clarke & Fletcher, 2003;Holmbeck, Bruno & Jandasek, 2006;Kars, Duijnstee, Pool, Delden, & Grypdonck, 2008;Keegan-Wells et al, 2002;McGrath et al, 2005;Shiota et al, 2004;S. Silva, Pires, Gonçalves, & Moura, 2002).…”

Dificuldades relatadas por cuidadores de crianças e adolescentes com leucemia: alterações comportamentais e familiares

“…Os cuidadores de uma criança ou adolescente em tratamento onco-hematológico, além de acompanharem o paciente, precisam adaptar rotinas sociais, profissionais e familiares, lidar com ameaças de recaídas, medos e expectativas e ainda zelar pelo bem-estar do filho em tratamento, com atenção à medicação, intercorrências, efeitos colaterais, consultas, internações e exames invasivos, eventos que expõem os cuidadores a condições potencialmente estressantes, com implicações adversas à qualidade de vida (Clarke, 2004;Clarke & Fletcher, 2003;Kars, Duijnstee, Pool, Delden, & Grypdonck, 2008;McGrath & cols., 2005;Shiota & cols., 2004;Silva, Pires, Gonçalves & Moura, 2002).…”