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Changes in intimate relationships following treatment for head and neck cancer: a qualitative study
Institutionen för kvinnors och barns hälsa, Uppsala universitet.
Umeå University, Faculty of Social Sciences, Department of Social Work.
Umeå University, Faculty of Medicine, Department of Clinical Sciences, Otorhinolaryngology.
Institutionen för kirurgiska vetenskaper, Öron-, näs- och halssjukdomar, Uppsala universitet.
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2017 (English)In: Journal of psychosocial oncology, ISSN 0734-7332, E-ISSN 1540-7586, Vol. 35, no 5, p. 614-630Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to determine how patients with head and neck cancer experience changes within their intimate relationships at the end of treatment and detect detrimental and facilitating factors in the process of resuming intimate relationships. Interviews were conducted with 131 patients. A core category – "Being open vs. not sharing the cancer journey" – emerged from the patients' narratives and was based on the experiences of engagement/disengagement, openess/fear, and patronising attitudes/sharing the burden. The findings point to the necessity of patients being open about the disease trajectory and might be understood in the light of theories about potential changes in identity and self-concept.

Place, publisher, year, edition, pages
Routledge, 2017. Vol. 35, no 5, p. 614-630
Keywords [en]
Head and neck cancer, intimate relationships, patients experience, social support, qualitative study
National Category
Social Work Cancer and Oncology
Identifiers
URN: urn:nbn:se:umu:diva-135348DOI: 10.1080/07347332.2017.1339224ISI: 000413909300007PubMedID: 28605311Scopus ID: 2-s2.0-85027846387OAI: oai:DiVA.org:umu-135348DiVA, id: diva2:1098451
Note

Acknowledgement of funding: This study was sponsored by the Swedish Cancer Society, Lions Cancer Research Foundation at Umeå University, the Swedish Laryng Foundation, and the Cancer Research Foundation of Northern Sweden.

Available from: 2017-05-24 Created: 2017-05-24 Last updated: 2023-03-23Bibliographically approved
In thesis
1. Life after treatment for head and neck cancer
Open this publication in new window or tab >>Life after treatment for head and neck cancer
2022 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Livet efter behandling för huvud- och halscancer
Abstract [en]

Background: Treatment for head and neck cancer (HNC) is often multimodal, including surgery, radiotherapy, and chemotherapy. The anatomic location of HNC and its treatments often affect vital functions such as swallowing and speech, but also physical appearance, leading to a risk for social withdrawal and nutritional difficulties that can affect the patient’s quality of life.

Aims: The general aims of this thesis were to describe the physical and social consequences for patients treated for HNC and to identify supportive needs in regaining a new everyday life including intimate relationships, return to work, and nutritional recovery.

Methods: Paper I (n = 131), objectives: to determine how patients with HNC experience changes in intimate relationships and to identify factors interfering with such relations. A semi-structured interview study was carried out on patients after treatment, and the analysis was inspired by the guidelines in constructive Grounded Theory. Paper II (n = 295), objective: to describe the frequency of patients’ returning to work after treatment for oropharyngeal cancer and to identify predictors and physical barriers (with a focus on pain, swallowing and speech difficulties, and physical appearance), that might interfere with the return-to-work process. A cross-sectional study using questionnaires was carried out 15 months after the diagnosis. Data were obtained from the Swedish Head and Neck Cancer Register. Paper III (n = 197), objective: to assess nutritional aspects and body weight in patients with HNC. A nutrition impact symptom-specific questionnaire for HNC was used to assess symptoms interfering with oral intake as well as interfering with body weight during the first year post-treatment. Paper IV (n = 21), objective: to examine how patients with HNC perceive life one year after treatment and how they experience health care. A semi-structured interview study was performed with an interview guide developed using concepts from the literature and clinical experience, and a thematic analysis approach was used.

Results: In Paper I most patients reported no major changes in intimate relationships at the end of treatment. In resuming intimate relationships, facilitating factors were stable relationships before treatment, engagement from others, and being open regarding the cancer, while detrimental factors were patronization and dis-engagement. This was summarised as “being open versus not sharing the cancer journey”. In Paper II, 15 months after diagnosis 84% of the patients who were working at the time for diagnosis had returned to work. Factors negatively associated with return to work were swallowing difficulties, problems talking on the telephone, and changed physical appearance. In Paper III, the post-treatment weight loss was related to the degree of symptoms and interference with oral intake, which also increased the risk for a body weight loss of ≥10% at 12 months after the end of treatment. In Paper IV, the patients were still suffering from side effects one year after treatment and from fear of recurrence, but they tried to live as they did before the cancer diagnosis. Even if most contacts with health care were experienced positively, patients lacked regular follow-ups regarding rehabilitation and contact with their contact nurse.

Conclusions: In Paper I, when resuming intimate relationships, the challenges were related to whether the patients were open or not about the disease. In Paper II, some remaining physical barriers were identified. A positive result from the study that can be reported to future patients is the high number of patients returning to work after treatment. In Paper III, both nutritional and clinical factors were shown to affect body weight, and a holistic approach is needed when addressing the patients’ nutritional needs. In Paper IV, despite the sequelae from treatment, the patients sought to live as they did before the diagnosis. This may disguise continuing needs, and by meeting the patients with engagement, the contact nurse-patient relation may uncover these needs and proper individualized support and rehabilitation can be offered.

Place, publisher, year, edition, pages
Umeå: Umeå universitet, 2022. p. 57
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 2191
Keywords
head and neck cancer, intimate relationships, return to work, nutrition, contact nurse
National Category
Cancer and Oncology Otorhinolaryngology
Research subject
Oto-Rhino-Laryngology; Oncology
Identifiers
urn:nbn:se:umu:diva-199315 (URN)978-91-7855-857-5 (ISBN)978-91-7855-858-2 (ISBN)
Public defence
2022-10-07, Föreläsningssalen ÖNH (målpunkt A82, plan 8), NUS, samt via Zoom, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Funder
Swedish Cancer SocietyCancerforskningsfonden i NorrlandThe Kamprad Family FoundationAFA InsuranceRegion Västerbotten
Available from: 2022-09-16 Created: 2022-09-13 Last updated: 2023-04-17Bibliographically approved

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Isaksson, JoakimGranström, Brith

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