The Healthcare Experiences of People With Head and Neck Cancer and Associated Communication Changes: An Interpretative Phenomenological Study

Head and neck cancer (HNC) includes a diverse group of cancers, involving complex care pathways and life-altering side effects, including changes to how people communicate. Patient experience is an important outcome of HNC care; however, to date, little research has been conducted to explore the healthcare experiences of those individuals with HNC and associated communication changes. We sought to explore how people with HNC and associated communication changes understand their healthcare experience. An interpretative phenomenological analysis framework was employed, using data from nine individual interviews. Six group experiential themes were identified: (1) <i>Assembling and reassembling supportive scaffolds: The role of significant others and peers in the healthcare experience</i>; (2) <i>Human connectedness in an overwhelming system: Reverence in presence, turmoil in absence</i>; (3) <i>Gathering, disengaging, or epiphany: The fluxing relationship with information</i>; (4) <i>Continuum of healthcare navigation: From frustration to relief</i>; (5) <i>A quest to reclaim self after upheaval</i>; and (6) <i>From confronting to seeking: The desire for professional expertise</i>. Findings show that healthcare engagement and navigation are ongoing for years post-primary treatment. The healthcare experience is often traumatic, but there are moments that bring people from vulnerability to safety with families, peers, and healthcare workers all contributing different roles. This group of people value expertise in their healthcare, have a fluctuating relationship with healthcare information, and begin to rebuild themselves early in the healthcare experience. This research helps to understand the healthcare phenomenon and can guide practices to support people with HNC throughout their continuum of care.