ABSTRACT
Despite a proliferation of research with families of children with cancer and gender differences in parental coping, few studies have explicitly explored the experiences of fathers of children with cancer. Using several different data collection efforts, including semistructured in-depth interviews and open workshops, this integrative analysis views fathers' experiences through the lens of gender. Findings suggest that fathers' experiences can be understood as influenced by gender identities, gender roles, and the gendered organization of support systems, employment, and health care institutions. The results suggest the need for interventions that provide fathers and entire families with the opportunity to develop new skills and coping strategies for dealing with the stresses and challenges of childhood cancer.
Subject(s)
Adaptation, Psychological , Disabled Children/psychology , Fathers/psychology , Gender Identity , Neoplasms/psychology , Child , Humans , Interviews as Topic , Male , Parenting/psychology , Stress, PsychologicalABSTRACT
Given the increasing interest in quality of life research in cancer survivorship, psychometric properties of the Quality of Life-Cancer Survivors (QOL-CS) were explored in a group of childhood cancer survivors. The QOL-CS is a 41-item visual analog scale composed of four multi-item sub-scales (physical well-being, psychological well-being, social well-being, spiritual well-being) and two sub-components (fears, distress). This instrument was incorporated in a mailed survey completed by 177 respondents. The underlying factor structure and internal reliability of the instrument were explored. A preliminary assessment of the external validity of the factor structure was undertaken. Results of a factor analysis were theoretically consistent with elements assessed in the QOL-CS, although misclassification of several items was noted and discussed. Internal-consistency reliability was very good (Cronbach's alpha = 0.80-0.89) for five of the six factors. Moderate (0.30 < r < 0.45) to high (r > 0.60) concurrent validity was observed for four factors. Discriminant validity was noted across groups defined by health and social status variables. Psychometric analysis indicated that the instrument measured distinct and relevant domains of quality of life for childhood cancer survivors, but in its current form does not appear to be an optimal measure of quality of life in this population.
Subject(s)
Neoplasms/rehabilitation , Quality of Life , Surveys and Questionnaires , Survivors , Adolescent , Adult , Factor Analysis, Statistical , Female , Humans , Male , Midwestern United States , Reproducibility of ResultsABSTRACT
The changing organization of health care requires social workers to deal with a variety of new demands, and in some cases alter their traditional professional practice. Using the specific case of childhood cancer as a framework (or set of case examples), this paper identifies key issues faced by oncology social workers in hospital settings under managed care and ways they have responded to them. The general content involves pressures on oncology social workers to adapt to the new corporate culture and ideals fundamental to managed care at the same time that the expressed psychosocial needs and desires of survivors of childhood cancer necessitate increased attention and expansion of service provision. Caught in conflicts that challenge them to reconcile simultaneous commitments to client service/empowerment and institutional conformity, social workers must establish a more powerful position to negotiate institutional and public policies that uphold the primacy of a core Social Work ethic: A commitment to client-centered service.
Subject(s)
Family , Managed Care Programs/organization & administration , Neoplasms/therapy , Social Work Department, Hospital/organization & administration , Social Work , Adolescent , Child , Conflict, Psychological , Cost of Illness , Health Services Accessibility , Humans , Medical Oncology , Organizational Culture , Social Support , Survivors , Travel , WorkforceABSTRACT
This, the sixth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology, develops another important and especially difficult topic: assistance for terminally ill children with cancer. This is provided for the pediatric oncology community as a useful set of guidelines. It should be always possible for a declining child to die without unnecessary physical pain, fear, or anxiety. It is essential that he or she receive adequate medical, spiritual, and psychological support, and that the child at no point feels abandoned. Palliative care, in the terminal phase of cancer, should be tailored to the different needs and desires of the child and the family, with the goal of providing the best possible quality of life for the days that remain.
Subject(s)
Child Care , Neoplasms/therapy , Palliative Care , Terminal Care , Anxiety/prevention & control , Attitude to Death , Bereavement , Child , Child, Preschool , Counseling , Family Health , Fear/psychology , Female , Humans , Male , Neoplasms/psychology , Pain/prevention & control , Parent-Child Relations , Professional-Family Relations , Professional-Patient Relations , Quality of Life , Social SupportABSTRACT
This, the fifth official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, develops another important topic: the Therapeutic Alliance between families and staff. This is addressed to the Pediatric Oncology Community as Guidelines that could be followed. Every parent, medical staff member, and psychosocial professional involved in the care of the child should be responsible for cooperating in the child's best interest. Everyone must work together toward the common goal of curing the cancer and minimizing its medical and psychosocial side-effects.
Subject(s)
Family , Neoplasms/psychology , Patient Care Team , Social Support , Humans , Neoplasms/therapy , PediatricsABSTRACT
This is the fourth official document of the SIOP Working Committee on psychosocial issues in pediatric oncology constituted in 1991. This document develops another topic discussed and approved by the SIOP Committee: "communication of the diagnosis" is addressed to the pediatric oncology community as guidelines that could be followed. The highly stressful nature of the diagnostic period must be acknowledged, and communication involving the staff and all family members should cover both medical and psychosocial issues. A well-planned and extensive initial session should be followed by continuing discussions. The goal is a knowledgeable family that can talk openly with its members and with the staff.
Subject(s)
Neoplasms/psychology , Truth Disclosure , Adolescent , Child , Child, Preschool , HumansSubject(s)
Family Health , Neoplasms/psychology , Bereavement , Child , Education , Follow-Up Studies , Health Personnel , Humans , Neoplasms/mortality , Social Support , Terminal CareABSTRACT
Data were obtained via mailed questionnaire from 91 adults with cancer and 78 spouses of adults with cancer. Findings suggest that spouses and patients worry equally about their own personal health, and that spouses worry more about patients' futures than the patients do themselves. In addition, spouses and patients report participating equally in the treatment process, yet patients report receiving significantly more social support than do spouses. The results point to the need for expanded attention to the concept of cancer as a "family disease," with special emphasis on the unique and often neglected experience of spouses of adult cancer patients.
Subject(s)
Adaptation, Psychological , Family/psychology , Neoplasms/psychology , Sick Role , Adult , Aged , Child , Female , Home Nursing/psychology , Humans , Leukemia/psychology , Lymphoma/psychology , Male , Marriage/psychology , Middle Aged , Social SupportABSTRACT
Presents participatory action research (PAR) as a scientific paradigm most relevant for inquiry and action with self-help groups. "Subjects" individual and collective involvement in the design, conduct, and utilization of research, and scientists' involvement in action to improve group functioning, are among the hallmarks of PAR. Such an approach is most consistent with self-help characteristics and ideology: highly participative membership, aprofessional leadership, localist and grass-roots orientation, and respect for experience-based knowledge. Conducting research and action for change that simultaneously generates useful knowledge and advances group goals requires new scientific roles and techniques. The orthodoxy of the conventional scientific paradigm is problematic for productive inquiry about self-help and for aiding self-help groups.
Subject(s)
Group Processes , Group Structure , Self-Help Groups , Adaptation, Psychological , Adult , Child , Humans , Neoplasms/psychology , Sick RoleSubject(s)
Neoplasms/psychology , Parent-Child Relations , Truth Disclosure , Child , Child, Preschool , Humans , Patient Education as TopicABSTRACT
Interviews with seventy-five parents of surviving children with cancer provide information on their relations with medical staff. The major issues that concern parents in regard to staff members include the staff's empathy with the child and their acceptance of parental participation in care. Discussion centers on how these and other issues affect parent-staff relations.
Subject(s)
Child, Hospitalized/psychology , Medical Staff, Hospital/psychology , Neoplasms/psychology , Parents/psychology , Adult , Assertiveness , Child , Child, Preschool , Conflict, Psychological , Consumer Behavior , Female , Humans , Male , Physician-Patient Relations , Professional-Family Relations , Social WorkABSTRACT
Seventy-four parents of children with cancer were asked to characterize the behavior of medical staff members with whom they interacted. Seven empirically distinct dimensions of staff behavior relevant to their relationships with parents were identified, including information transmission, clarity and honesty of communication, acceptance of parental efficacy, resolution of conflicts, personal contact with parents, empathy with the child, and staff competence. With respect to their experiences with the treatment of their child, parents also were asked to indicate their satisfaction with the medical staff in terms of changes in their respect and/or anger for the medical staff, changes in feelings about doctors, support received from doctors and nurses, and stress resulting from tense relations with the staff. The seven dimensions of parent-staff relationships were used as predictors in a series of multiple regressions employing these satisfaction measures as criteria. The overall quality of the parent-staff relationship was best predicted by positive personal contact. The strongest predictor of whether or not parents felt increased anger was staff empathy with child. Increased respect for the medical staff was predicted by a combination of information transmission and perception of staff competence. Experience of support by parents was best predicted by information transmission and staff acceptance of parental efficacy in treatment and decision making. This complex pattern supports the usefulness of disaggregating measures of staff behavior and parent satisfaction when examining the relations between medical consumers and service providers.
