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How Illness Affects Family Members: A Qualitative Interview Survey

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Abstract

Objective

Spillover effects of illness on family members can be substantial. The objective of this study was to identify the domains of family members’ health and well-being that are affected when a relative has a chronic health condition.

Methods

Semi-structured telephone interviews were conducted in February 2012 with 49 individuals whose relatives had any of five chronic health conditions (arthritis, cancer, Alzheimer’s disease/dementia, cerebral palsy, and depression), purposively sampled to include different relationships with the ill relative (parent, child, spouse). Subjects were queried on whether and how having an ill relative affected their health and well-being; they were also asked about their caregiving responsibilities and the relative’s health. Interview data were analyzed using thematic analysis.

Results

Family members in our sample reported experiencing psychological and non-health effects from having an ill relative, and secondarily somatic effects. Effects on emotional health were most commonly reported as psychological spillover; non-health effects frequently included changes in daily activities and provision of caregiving. Spouses of patients reported the broadest range of spillover domains affected and adolescents of ill parents the fewest. Family members reported experiencing effects that were perceived as both positive and negative.

Conclusions

Spillover of illness onto family members encompasses a wide range of domains of health and well-being, extending beyond those included in many existing health-related quality of life measures. Outcomes measurement efforts should be expanded to adequately capture these health and well-being outcomes for analysis, to ensure that the benefits of interventions are accurately estimated and conclusions are valid.

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Acknowledgments

The authors thank Erika Alvarez for conducting the interviews of the survey. This work was supported by grant number 7R01NR011880 from the National Institute of Nursing Research to EW. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Nursing Research or the National Institutes of Health. Preliminary results were presented at the 34th Annual Meeting of the Society for Medical Decision Making, October 2012, Phoenix, AZ, USA.

EW, AS, and LAP each have no conflicts to declare. EW and LP conceived of the study; EW and AS performed data analysis; EW wrote the manuscript; all authors reviewed and approved the final manuscript. EW serves as guarantor for the results.

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Authors and Affiliations

  1. Center for Health Decision Science, Harvard School of Public Health, 718 Huntington Ave, Boston, MA, 02115, USA

    Eve Wittenberg & Adrianna Saada

  2. Child Health Evaluation and Research Unit, Division of General Pediatrics, University of Michigan Health System, Ann Arbor, MI, USA

    Lisa A. Prosser

Authors
  1. Eve Wittenberg
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  2. Adrianna Saada
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  3. Lisa A. Prosser
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Correspondence to Eve Wittenberg.

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Wittenberg, E., Saada, A. & Prosser, L.A. How Illness Affects Family Members: A Qualitative Interview Survey. Patient 6, 257–268 (2013). https://doi.org/10.1007/s40271-013-0030-3

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