Mark A. Chesler

Participatory action research with self-help groups: an alternative paradigm for inquiry and action.

ConclusionI have not sought here to make a case for participatory action research as theonly mode for inquiry and action with self-help groups, but to raise issues that may help counter the dominance of the conventional model and encourage a more pluralistic scientific enterprise. Researchers must be competent in and free to use (or try to use) whatever paradigms and techniques best fit their own epistemological preferences, the phenomena they wish to understand, and the goals and resources they and their coparticipants have. In particular, the assumptions and operating styles associated with PAR seem especially relevant and useful for inquiry and action that can advance knowledge about, and contribute to the effectiveness of, self-help groups. Dogma about “the proper scientific method” may suit the current scientific establishment and governmental funding agencies, but it does not necessarily lead to good research, research that is valid and useful to the scholarly community and to the self-help movement.

Stress, Coping, and Marital Functioning among Parents of Children with Cancer.

In individual interviews and questionnaires, 32 married couples provide information regarding their experiences and strategies for coping with their childrens cancer. This report examines the association between medical stress, personal coping strategies, coping strategies of spouses, congruence of the couples coping patterns, and their assessments of marital functioning. Most informants report that family cohesion is strengthened by their experiences wtrn cntianooa cancer and that their spouses are the most important source of social support. However, as the number of the childs hospitalizations increases, perceptions of support from spouse and assessments of marital quality decreases. The wifes perceptions of support from her spouse are related to the husbands involvement in the care of the child; and the husbands perception of support from his spouse is related to the wifes availability in the home as opposed to the hospital. Although personal coping strategies are unrelated to evaluations of marital functioning, some matches between personal and spouse coping are related to perceptions of marital quality and support from spouses.

Gender Roles and/or Styles in Crisis: An Integrative Analysis of the Experiences of Fathers of Children with Cancer

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.

Guidelines for assistance to terminally ill children with cancer: A report of the SIOP working committee on psychosocial issues in pediatric oncology

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.

To foster healing among adolescents and young adults with cancer: what helps? What hurts?

PurposeThe physical and emotional well-being of adolescents and young adults with cancer (AYA) rests on the ability of all concerned to promote helpful forms of care and reduce hurtful forms. The purpose of this study was to identify aspects of behavior that may promote or inhibit healthy psychosocial adjustment for this age-defined population.MethodSeventeen young adult cancer survivors participated in focus groups to discuss what people said or did that they found helpful or hurtful. Inductive and deductive techniques of coding and analysis of these qualitative data were performed.ResultsSurvivors reported being the recipients of positive and negative communications and behaviors of an informational, practical, interpersonal, and/or emotional character. Most common were comments and actions in the interpersonal realm. More helpful than hurtful comments were reported, except in the informational category, where the “bad news” about cancer and the style of information-sharing created hurt.ConclusionHow people communicate information, tasks, and feelings to AYA patients and survivors affects how they experience their illness and think about themselves and their current and future situations. All parties—doctors, other medical providers, family members, and friends—need to attend to the manner as well as content of their communications and interactions with AYAs and to the social and emotional context within which communication and interaction occurs. Specific recommendations for the care of AYA cancer patients are offered, emphasizing the importance of attending to the cognitive capabilities and unique developmental challenges associated with adolescence and young adulthood.

Alternative Professional Roles in Health Care Delivery: Leadership Patterns in Self-Help Groups

The increasing professionalization of health care delivery systems, improved client awareness, funding cutbacks, and an emphasis on voluntarism have led recipients of health services to turn increasingly to self-help groups. This article examines the leadership and organizational pattern of such groups, using a study of 43 self-help groups from around the U.S. whose members are parents of children with cancer. Three leadership patterns emerged: groups were independent and parent-led, were led by professionals, or had a shared leadership of parents and professionals. Data indicate that the professionally led groups were the smallest, leastformal, and had the narrowest range of activities. The groups with shared leadership had the greatest longevity, tended most often to retain as members parents of deceased children. The authors conclude that such coalitions of clients and professionals are vital for ensuring proper service delivery at a time when health care systems will likely remain bureaucratic and public resources for professional care are being reduced.

Guidelines for a therapeutic alliance between families and staff: A report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology

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 childs best interest. Everyone must work together toward the common goal of curing the cancer and minimizing its medical and psychosocial side-effects.

A psychometric analysis of the Quality of Life-Cancer Survivors (QOL-CS) in survivors of childhood cancer

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 (Cronbachs α = 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.

RELATIONSHIPS WITH THE MEDICAL STAFF AND ASPECTS OF SATISFACTION WITH CARE EXPRESSED BY PARENTS OF CHILDREN WITH CANCER

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.

Client Empowerment in the Human Services: Personal and Professional Agenda:

The authors juxtapose autobiographical accounts of their personal and professional lives to examine the interplay of their personas and work in the social sciences. Chesler is an action researcher and change agent who focuses primarily on young people and their parents and on those providing them human services. Hasenfeld is an academic who focuses primarily on relations between clients and human service providers and on the systemic changes needed to improve these relations. They share domain assumptions, particularly a belief in the “good” society based on justice, social equality, and respect for diversity, are committed to improving the life chances of the oppressed and disadvantaged, and believe that empowering the clients of human service agencies is crucial to improving the effectiveness and responsiveness of such organizations.