The Pediatric Cancer Hospitalization Experience: Reality Co-constructed

Abstract

Although pediatric cancer treatment has been reviewed by several authors, the lived experiences of children undergoing this process have seldom been discussed in the literature. The data for this article were obtained from a larger qualitative study that provided a collective view of the pediatric cancer experience at San Jorge Children's Hospital in Puerto Rico. In this article, findings that are directly related to the hospitalization process of these young patients are described, including the hospital as a safe haven, dealing with pain, taking control, and thriving in adversity. These findings provide a rationale for the development of a biopsychosocial model of health that emphasizes reciprocal interactions among the biological, psychological, social, cultural, and spiritual dimensions that influence health.

Communication during childhood cancer: Systematic review of patient perspectives

“…53 Participants wanted clinicians to empathize with their situation and "tell me you're going to have my back." 44,48,[54][55][56][57][58] Validated personhood and companionship 44,48,[54][55][56][57][58] Validated personhood and companionship…”

Identification of supportive care needs in a sample of Puerto Rican cancer patients with the supportive care needs survey

“…[14] For example, family members have become aware that satisfying social needs through psychosocial support during cancer treatments might not only impact the course and success of treatment, but also may be beneficial in ameliorating the short and long-term side effects, such as fatigue. [15,16] It has been proposed that meeting patients' needs during cancer treatments helps patients in coping with the disease and is an important part of any comprehensive oncological care. [15] Nonetheless, limited attention has been given to the supportive care needs of Puerto Rican cancer patients during treatments, even though the treatment phase of cancer is frequently perceived by Puerto Ricans as the most difficult and painful one.…”

“…[15] Nonetheless, limited attention has been given to the supportive care needs of Puerto Rican cancer patients during treatments, even though the treatment phase of cancer is frequently perceived by Puerto Ricans as the most difficult and painful one. [16] Needs assessment directly identifies specific issues of need for patients, as well as the perceived magnitude of those needs. [17] If patients' needs are met, adherence to cancer treatments increases, and thus patients' outcomes of QOL and survival thereby improve.…”

Providing Children and Adolescents Opportunities for Social Interaction as a Standard of Care in Pediatric Oncology

“…The hospital environment can be structured to promote social interaction. For example, visitation policies that allow for family and friend visitors when feasible given medical restrictions as well as facilities that include group spaces to allow for peer‐to‐peer interactions can promote social support . Further, inclusion of adolescents in designing hospital spaces that facilitate connection and maintain a focus on social development goals is underscored …”

“…Some friendships ended whereas others became closer. Nursing staff, play therapist and hospital teachers provided distraction which helped the adolescent girls cope with fearful situations. Research objective clearly state; qualitative approach clearly justified; study context and role of researchers clearly described; researchers reported using purposeful sampling but no adolescent males were included in the sample; limited details provided about interview questions; content analysis appropriate.6Balen R, Fielding D, Lewis IJ (1998) Questionnaire with open‐ and closed‐ended (Likert response) questions. Completed at home and mailed‐in.135 parents (mostly mothers) of children 9–16 years old with primarily leukemia or solid tumor diagnoses. Families of children who are confident, active and able to separate from parents were more likely to enroll their children in a one‐week camp program. Parents who encourage independence and new experiences were more likely to enroll their children in a one‐week camp program. Parents must find balance between protection and independence for their children with cancer in order to allow children to engage in social activities such as camp. Research question clearly stated; method of data collection clearly described; sampling strategy appropriate to research question; no psychometric properties reported for the questionnaire; coding of qualitative data is not described.6Beckwitt AE (2014) Qualitative analysis of telephone interviews during which participants were asked to describe their camp experiences, what camp means to them and motivation for returning to camp as a counselor or participant.23 adult survivors of childhood cancer who had cancer between the ages of 1 and 18 years recruited from one of eight childhood cancer camps. Three themes were identified: normalcy (opportunity to feel normal, engage in typical activities, and connect with other adult childhood cancer survivors), meaningful camp experiences (give back to camp and other children with cancer) and access to information. Camps can reduce sense of isolation, promote friendships, and identify with other campers. Research question clearly stated; qualitative approach clearly justified; study context clearly described; role of the researcher clearly described; method of data collection clearly described; method of data analysis clearly described and appropriate to research question.6Berrios‐Rivera R, Rivero‐Vergne A, Romero I (2008) Qualitative study using semi‐structured interviews of adolescents and a parent to capture their hospital experience.7 children and adolescents aged 6–17 years with ALL who completed treatment and were in remission during the last 1–4 years. Patients described visits from family, friends, and celebrities as positive. Well‐decorated room, watching TV, drawing and crafts described as making the hospitalization positive and safe. Relationship developed between mothers and patients with the oncology team contributed to a positive experience. Research question clearly stated; qualitative approach justified; study context clearly described; role of the researcher c...…”