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Keywords:

  • cancer;
  • oncology;
  • survivorship;
  • spouses;
  • caregivers;
  • quality of life

Abstract

Objective: This qualitative follow up of long-term (>5 years) cancer survivor and spouse participants from a large, previous study of quality of life after blood and marrow transplantation (BMT) was designed to gain a deeper understanding of lasting life changes they experienced.

Methods: Thirty spouse–survivor pairs, an average of 13 years post-BMT, were individually interviewed to identify lasting life changes. Participants were asked about their most significant long-lasting change since cancer/BMT, most significant positive change and negative change, and whether the experience had affected them and their spouse differently.

Results: Spouses and survivors spontaneously identified both positive and negative changes. Spouses reported a higher proportion of negative changes (24%) than did survivors (15%), and survivors a higher proportion of positive changes (85%) than spouses (76%). For both groups, the most frequent positive change was in ‘perspective/outlook on life’ and negative change was ‘lingering health effects,’ although survivors mentioned the latter twice as often as did spouses. Spouses were more likely to talk about changes in the first-person plural (we, us) that were largely emotional or in relation to the survivor, whereas survivors spoke of changes in the first-person singular (I, me) that occurred to them directly and were largely physical.

Conclusions: Although both spouses and survivors described similar negative and positive long-lasting changes that continued an average of 13 years post-BMT, they reported differences in the ways they were impacted by the experience, which was reflected in the language they used. Implications for future studies, family education, and couples-based interventions are discussed. Copyright © 2010 John Wiley & Sons, Ltd.