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“The Family Factor” Knowledge Needed in Oncology Research

Hinds, Pamela S. PhD, RN, FAAN; Feetham, Suzanne L. PhD, RN, FAAN; Kelly, Katherine Patterson PhD, RN; Nolan, Marie T. PhD, RN, FAAN

doi: 10.1097/NCC.0b013e31823b561f
DEPARTMENT: Guest Editorial

Children’s National Medical Center, Washington, DC; School of Medicine and Health Sciences, Department of Pediatrics, The George Washington University, Washington, DC

Research Consultant, Children’s National Medical Center, Visiting Professor, University of Wisconsin, Milwaukee

Nurse Scientist, Children’s National Medical Center, Assistant Clinical Professor, School of Nursing, The George Washington University, Washington, DC

School of Nursing, Johns Hopkins University, Baltimore, Maryland

The authors have no funding or conflicts of interest to disclose.

Our literature in oncology is replete with valid findings about the cancer experiences of individuals, from prevention, to diagnosis, to cure, to end of life. These findings have been translated into clinical practice guidelines or have been independently applied by clinicians. Importantly, these findings are applicable to adults and children who seek to adopt healthy lifestyles to diminish their likelihood of developing cancer, to caregivers of individuals being treated for cancer, and to patients in treatment themselves, in survivorship or at end of life. These findings improve the care of individuals affected by cancer around the world in invaluable ways. How could we add to these contributions? How could we extract knowledge that goes beyond these findings and increase their applicability to clinical care? We believe that the way to do this is to conduct more studies that address the “family factor.”

From the time of Nightingale forward, the family has been recognized by many as the most important social context in which health and illness occur, with the family being responsible for providing an environment to support the health and well-being of its members. Likewise, the health of an individual affects the health and development of individual family members and of the family as a whole. Although the cancer literature is heavily dominated by reports of individual cancer experiences, there are exemplary reports of how families experience cancer, for example, from the patient-caregiver dyad perspective1,2 and from couples regarding treatment decision making for their child with cancer.3

The family factor, so named by Schumm and colleagues,4 has the potential to guide our research, from the kind of questions we pose, to the methods we use, to the sampling plan we establish, and indeed to the interpretation of our data. Originally coined to consider how data from multiple family members could be analyzed together to describe family experiences, the family factor perspective—if used in today’s research—could lead us to understand the interdependence of individual family members’ perspectives (ie, not only the caregiver but also the caregiver and the ill person; the ill child and the parent; the ill patient and the spouse; the ill child and his/her siblings; the transplant patient, donor, and other family members who are not the donors). Our commitment to studying and understanding this interdependence will yield a new class of interventions designed to assist entire families affected by cancer. We believe that the interdependence accounts for variances in the impact of interventions on individual cancer patients, family members, and on the family as a whole.

Intervention studies and systematic reviews that seek to evaluate family interventions must begin with a clear definition of the type of intervention being examined and its target sample. Interventions based only on the well-documented perspective of 1 family member can limit the applicability to other family members and, at their worst, risk creating additional challenges for the family. For example, some parents making treatment decisions for their ill child with cancer exclude the child and other children in the family to protect them from distressing information, but the outcomes of this exclusion for the ill child, siblings, parents, and family are unknown. An intervention would be well supported by a unilateral approach if its focus is independent of the perspectives of other family members and directed only to the individual whose perspective did inform the intervention. An intervention developed based on one member’s perspective but which is intended to influence multiple family members could chance being incompletely informed and thereby contributing to unanticipated or negative experiences for family members or for the entire family. In contrast, those interventions that reflect the perspectives of multiple family members are more likely to be sensitive to the overall family style or “shared variance.”

True family-level research must be informed by data obtained from family members whose perspectives are relevant to what is being studied. Family factor knowledge may already be available to us in our existing databases that include 2 or more perspectives from members of the same family if analyzed at the level of the family in addition to the level of parent or child, caregiver and ill patient, and so forth. Insight into the routine and the illness-specific interactions of the family could be the basis of family-level interventions for care. Although there are stunning challenges to interpreting data at the level of the family, innovations in both quantitative and qualitative methods now allow for this level of analysis.

Cancer Nursing seeks family-focused research submissions where the perspectives of 2 or more family members are included and are analyzed at both the individual family member level and the family level with a careful consideration of how the two are similar and different. In this way, we will learn the sources of variance within the family and their contributions to the overall family perspective. As a result, we will have a more comprehensive examination of the underlying family factor.

Our very best to you.

– Pamela S. Hinds, PhD, RN, FAAN

Children’s National Medical Center

Washington, DC;

School of Medicine and Health Sciences

Department of Pediatrics

The George Washington University

Washington, DC

– Suzanne L. Feetham, PhD, RN, FAAN

Research Consultant

Children’s National Medical Center

Visiting Professor

University of Wisconsin


– Katherine Patterson Kelly, PhD, RN

Nurse Scientist

Children’s National Medical Center

Assistant Clinical Professor

School of Nursing

The George Washington University

Washington, DC

– Marie T. Nolan, PhD, RN, FAAN

School of Nursing

Johns Hopkins University

Baltimore, Maryland

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1. Kim Y, Carver CS, Spillers RL, Love-Ghaffari M, Kaw CK. Dyadic effects of fear of recurrence on the quality of life of cancer survivors and their caregivers [published online ahead of print 2011]. Qual Life Res.
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© 2012 Lippincott Williams & Wilkins, Inc.