RESUMO
BACKGROUND: Childhood cancer affects the entire family. Siblings experience similar stress to that of the ill child, including anger, depression, jealousy, guilt, and social isolation. School reentry programs are shown to be positive interventions for patients, it is hypothesized that similar outcomes exist for siblings. OBJECTIVE: To examine the feasibility of studying the impact of the Ontario Oncology Nurse School Visitation Program on the well-being and school adjustment of siblings of pediatric cancer patients. METHODS: Fourteen sibling participants and parents completed a semistructured interview and the PedsQL® questionnaire before and after a nurse school visit. School attendance was also compared and data were collected for logistics of study procedures. RESULTS: The mode of data collection was agreeable and easy to plan and execute. School attendance showed a reduction of days missed; there was no significant impact on PedsQL results but the interviews yielded positive feedback. CONCLUSIONS: The outlook for siblings improves with the support of family members and health care professionals. This pilot study provides hypotheses and design for future research.
Assuntos
Neoplasias/psicologia , Serviços de Saúde Escolar , Instituições Acadêmicas , Irmãos/psicologia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Neoplasias/enfermagem , Enfermagem Oncológica , Ontário , Enfermagem Pediátrica , Projetos Piloto , Leucemia-Linfoma Linfoblástico de Células Precursoras/enfermagem , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Projetos de Pesquisa , Serviços de Enfermagem Escolar , Inquéritos e QuestionáriosRESUMO
PURPOSE: Symptom assessment is an emergent area of research in pediatric cancer. Our team previously reported on the development of a questionnaire to be completed by parents to determine symptom prevalence and bother. This exploratory study examined parental nonprobed, free-text comments about their child's treatment-related symptoms reported on the questionnaire. METHOD: Participants were parents of children aged 4 to 18 years who had been diagnosed with cancer at least 2 months prior to enrolment and had received intravenous chemotherapy within the past month at 1 of 5 pediatric cancer centers. The questionnaire consisted of 69 or 71 items (based on child's age) addressing physical and psychological sequelae. Each symptom query was accompanied by a blank space in which parents could comment on their response. Comments were analyzed guided by content analysis methodology. RESULTS: Five major themes emerged: parental attributions for the symptoms experienced in their child; coping patterns and communication styles within the family; evidence of anticipatory, procedural, and other anxieties; interruption of daily life; and changes in the child's physical appearance. CONCLUSIONS: These exploratory findings provide context to parental perception of their child's treatment-related symptoms and may contribute to a better understanding of parental perception of child and the family coping and communicating style. These findings may assist in the development of psychoeducational interventions aimed at promoting open communication styles within the family and reducing child and parent burden during treatment procedures.
RESUMO
BACKGROUND: Best practice guidelines for the treatment of cancer now advocate for a child- and family-centered model of care and a psychosocial model of risk prevention. However, healthcare professionals (HCPs) report a number of barriers preventing the implementation of psychosocial care, including an absence of tools to help identify psychosocial problems within the family. OBJECTIVES: The aims of this study are to (1) explore the psychometric properties of the Psychosocial Care Checklist (PCCL) and (2) test if the PCCL can differentiate the degree to which HCPs are aware of psychosocial problems within the family (patient, siblings, parents) of a child with cancer. METHODS: Thirty-seven HCPs caring for a child with cancer completed the PCCL at time 1 (2-4 weeks after diagnosis) and 29 HCPs completed the PCCL at time 2 (2-3 weeks after). RESULTS: The PCCL had strong test-retest reliability for all domains (α > .60) and strong internal consistency for the total PCCL (α = .91). Interrater reliability was moderate for the oncologist-nurse dyad with regard to sibling knowledge (r = 0.56) and total psychosocial knowledge (r = 0.65). Social workers were significantly more knowledgeable than both nurses and oncologists about total family problems (P = .01) and sibling problems (P = .03). CONCLUSIONS: Preliminary findings suggest that the PCCL has adequate test-retest reliability and validity and is useful in differentiating the degree to which HCPs are aware of psychosocial problems within the family, with social workers being the most knowledgeable. IMPLICATIONS FOR PRACTICE: Using the PCCL may help HCPs to identify psychosocial problems within the family and appropriately allocate psychosocial resources.
Assuntos
Família/psicologia , Conhecimento , Neoplasias/psicologia , Assistência Centrada no Paciente/métodos , Pediatria/normas , Adolescente , Criança , Feminino , Humanos , Masculino , Pediatria/métodos , Projetos Piloto , Psicometria , Reprodutibilidade dos TestesRESUMO
PURPOSE/OBJECTIVES: To examine the perceptions of healthcare providers (HCPs) regarding the utility of two psychosocial screening tools designed for pediatric oncology, the Psychosocial Assessment Tool-Revised (PATrev) and the Psychosocial Care Checklist (PCCL). DESIGN: Repeated measures comparative study. SETTING: Four pediatric health centers in Ontario, Canada. SAMPLE: 15 oncologists, 14 nurses, and 8 social workers. METHODS: Using a visual analog scale (VAS), participants were asked to rate how useful they found (a) the psychosocial summary derived from the parent-completed PATrev, used to assess family psychosocial risk, and (b) the HCP-completed PCCL, used to identify family psychosocial needs. Measures were completed soon after diagnosis and six months later. Mann-Whitney U tests were used for analyses. MAIN RESEARCH VARIABLE: VAS scores. FINDINGS: Pediatric oncology HCPs differ in their acceptance of the psychosocial screening tools tested. The highest utility ratings for both instruments were from nurses, and the lowest utility ratings were from social workers; moderate ratings were obtained from oncologists. CONCLUSIONS: Psychosocial screening tools can identify the psychosocial needs of children with cancer and their families throughout the cancer trajectory. Consequently, these tools could foster communication among colleagues (medical and nonmedical) who are caring for children with cancer about the psychosocial needs of this population and the allocation of resources to address those needs. IMPLICATIONS FOR NURSING: Nurses seem to value these tools more than other HCPs, which may have positive implications for their clinical practice.
Assuntos
Detecção Precoce de Câncer/psicologia , Pessoal de Saúde/psicologia , Neoplasias/diagnóstico , Pais/psicologia , Pacientes/psicologia , Adulto , Atitude do Pessoal de Saúde , Criança , Pré-Escolar , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Neoplasias/psicologia , Enfermagem Oncológica/métodos , Ontário , Enfermagem Pediátrica/métodos , Projetos Piloto , Inquéritos e QuestionáriosRESUMO
GOALS OF WORK: We aimed to develop an instrument to assess cancer-treatment-related adverse effects that parents believe children find most bothersome and use it to solicit the opinions of parents regarding this issue. MATERIALS AND METHODS: Parents of children 4 to 18 years of age who had received intravenous antineoplastic therapy in the last month were asked to rank prevalence, severity, and degree of bother of each symptom on behalf of their child using a questionnaire. MAIN RESULTS: One hundred fifty-eight of 200 (82%) questionnaires were evaluable. The most prevalent symptoms identified were mood swings (85%), fatigue (80%), and disappointment at missing activities with friends/peers (74%). These symptoms were also most commonly identified as being significantly severe. Symptoms most commonly identified as the most bothersome were disappointment at missing activities with friends/peers (50%) and feeling worried about receiving treatment, procedures, or side effects (43%). Symptoms most commonly identified as the most severe and bothersome were disappointment at missing activities with friend/peers (46%); feeling worried about receiving treatment, procedures, or side effects (40%); and painful, aching, or stiff bones, joints, or muscles (36%). CONCLUSIONS: This information can be used when explaining the effects of cancer treatment to patients/families, creating policies regarding pediatric cancer care and framing research hypotheses in pediatric supportive care.