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Living with head and neck cancer:: a profile of captivity
Nordic Council of Ministers, Nordic School of Public Health NHV.
Nordic Council of Ministers, Nordic School of Public Health NHV.
Kristianstad University College, Kristianstad, Sweden.
2010 (English)In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9816, E-ISSN 1752-9824, Vol. 2, no 1, 22-31 p.Article in journal (Refereed) Published
Abstract [en]

Aim.  To illuminate what it means to live with head and neck cancer.

Background.  Patients could experience head and neck cancer as more emotionally traumatic than other cancers because of visible disfigurement and its life-threatening impact on vital functions. This long-term illness often leads to lifestyle changes such as to physical function, work and everyday tasks, interpersonal relationships and social functioning.

Design.  This study used a qualitative and explorative longitudinal and prospective design with semi-structured interviews and open-ended questions. Twenty-one interviews were conducted with six participants with newly diagnosed or newly recurrent head and neck cancer. The analysis was descriptive and interpretive.

Findings.  The participants were living ‘in captivity’ in the sense that their symptoms were constant reminders of the disease. Our findings also revealed existential loneliness and spiritual growth, as interpreted within six themes: altered sense of affiliation; hostage of health care; locked up in a broken body, but with a free spirit; confined in a rogue body, forced dependency on others, and caught up in a permanent illness trajectory.

Conclusions.  Living with head and neck cancer involves emotional and existential vulnerability. The participants and their next of kin experienced insufficient support from health services and inadequate coordination between phases of their lengthy illness trajectory. These findings call for changes in oncological rehabilitation and management. Patient care must take a holistic view of everyone involved, centring on the individual and the promotion of health. A care coordinator could navigate between the individual patient needs and appropriate health services, hopefully with results that lessen the individual’s emotional and existential confinement.

Place, publisher, year, edition, pages
2010. Vol. 2, no 1, 22-31 p.
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:norden:org:diva-3710DOI: 10.1111/j.1752-9824.2010.01042.xOAI: oai:DiVA.org:norden-3710DiVA: diva2:786289
Available from: 2015-02-05 Created: 2015-02-05 Last updated: 2015-02-09Bibliographically approved
In thesis
1. LIVING WITH HEAD AND NECK CANCER: AHEALTH PROMOTION PERSPECTIVE: A Qualitative Study
Open this publication in new window or tab >>LIVING WITH HEAD AND NECK CANCER: AHEALTH PROMOTION PERSPECTIVE: A Qualitative Study
2010 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background and aim: In society there is a growing awareness that a vital factor for patientswith chronic diseases, such as head and neck cancer (HNC), is how well they are able tofunction in their everyday lives – a common, but often overlooked, public health issue. Theoverall aim of this thesis is to reach a deeper understanding of living with HNC and toidentify the experiences that patients felt promoted their health and well-being. It alsoexplores the patients’ experiences of contact and care from health professionals and whetherthese encounters could increase their feelings of health and well-being; salutogenic approach.

Methods: This thesis engages a qualitative data design. On three occasions, 35 purposivelyselected patients were interviewed (31 from Sweden and one from Denmark, Finland, Island,and Norway). The first study was conducted in the Nordic counties (I), and the remainingstudies were conducted in Sweden (II, III, IV). Interviews were performed on a single basis(I, II, III) and then repeated (IV). The individual, semi-structured qualitative interviews usedopen-ended questions (n=53). Three different forms of analyses were used: critical incidenttechnique (I), thematic content analysis (II), latent content analysis (III), and interpretativedescriptive analysis (paper IV).

Findings: Living with head and neck cancer was expressed as living in captivity, in the sensethat patients’ sometimes life-threatening symptoms were constant reminders of the disease.The patients experienced a threat against identity and existence. Patients struggled to findpower and control over everyday life, and if successful this appeared to offer them better health and well-being along with spiritual growth. The general understanding was that these patients had strong beliefs in the future despite living on a virtual rollercoaster. The patients went through a process of interplay of internal and external enabling that helped them acquire strength and feelings of better health and well-being. Consequently, they found power and control from inner strength and other health resources, e.g. social networks, nature, hobbies,activity, and health professionals. However, the findings also revealed the opposite; that somepatients were more vulnerable and felt powerless and faced everyday life with emotional andexistential loneliness. They were dependent on next of kin and health professionals. Having good interpersonal relationships and emotional support 24 hours a day from next of kin were crucial, as were health promoting contacts and care from health professionals. This healthpromoting contact and care built on working relationships with competent healthprofessionals that were available, engaged, respectful, validating, and, above all experiencedin the treatment phase. But many patients experienced not health promoting contact and care –and a sense of not being respected, or even believed. Added were the patients’ experiences ofinadequate coordination between phases of their lengthy illness trajectory. They felt lost andabandoned by health services, especially before and after treatment.

Conclusions: Inner strength, good relationships with next of kin, nature, hobbies, andactivities could create strength and a sense of better health and well-being. Patientsexperienced a mutual working relationship during dialoguing and sensed co-operation andequality in encounters with competent health professionals. This could lead to enhancedpower and control i.e. empowerment in a patient’s everyday life. The findings highlightpsychosocial rehabilitation in a patient-centred organisation when health professionals supportpatients’ inner strength and health resources, and also offer long-term support to next of kin.Finally, this research suggests that if health professionals could gain a deeper understandingof the psychosocial, existential, social, and economic questions on patients’ minds, they couldbetter sense how patients feel and would be better equipped not only to offer greater support,but to raise their voices to improve health policy and health care for these patients.

Abstract [sv]

Syfte och bakgrund: Avhandlingens övergripande syfte var att få en djupare förståelse förpersoner med huvud – halscancer vardagsliv samt vad som främjar deras hälsa ochvälbefinnande d v s ett salutogent synsätt. Kroniska sjukdomstillstånd såsom cancer räknasnumera till de stora folksjukdomarna och vid huvud – halscancer är vikten av ett fungerandevardagsliv emellertid ett ofta förbisett folkhälsoproblem.

Metod: Avhandlingen omfattar fyra delarbeten baserade på kvalitativa data. Resultatenbaseras på semistrukturerade individuella intervjuer (n=53) som riktades till 35 utvaldapersoner. Den första studien (I) genomfördes i Danmark, Finland, Island, Norge och Sverigeoch de övriga i Sverige (II, III, IV). Intervjuerna genomfördes vid ett tillfälle (I, II, III) ochvid upprepade tillfälle (IV). Tre olika textanalyser användes, kritisk händelse teknik (I),tematisk innehålls analys (II), latent innehållsanalys (III) och tolkande beskrivande analys(IV).

Resultat: Att leva med huvud - halscancer beskrevs som ett liv i fångenskap och upplevdessom att åka i berg och dalbana mellan hopp och förtvivlan. De ofta livshotande symtomenpåminde ständigt om sjukdomen och upplevdes som hot både mot existensen och motidentiteten. Detta till trots kom ibland en stark optimism och tro på framtiden till uttryck.Några av de intervjuades vardagsliv präglades dock av känslomässig och existentiellensamhet och upplevelser av sårbarhet och maktlöshet. Att ha makt och kontroll över denegna livssituationen liksom närståendes känslomässiga stöd, ibland dygnet runt, främjadehälsan. Hälsofrämjande kontakter med vårdpersonalen upplevdes främst under sjukhusvistelsen. Avgörande var en god och bekräftande patient vårdar relation samt att personalenhade hög kompetens och visade engagemang och respekt i vårdsituationen. Flera av deintervjuade beskrev dock allvarliga brister i kontakten med sjukvården. Upplevelser av bristpå respekt och att inte bli trodd i sin sjukdomsupplevelse beskrevs, vilket vanligast iperioderna före och efter sjukhusvistelsen. Samordningen mellan hälso- och sjukvårdens olikafunktioner upplevdes som bristfällig under hela sjukdomsförloppet.

Konklusion Inre styrka, goda relationer med närstående, nära kontakt med naturen, hobbyeroch andra aktiviteter skapade upplevelser av hälsa och välbefinnande hos personer med huvud- halscancer. I dialog med kompetent vårdpersonal, där samverkan och jämlikhet var tydlig,upplevdes ömsesidiga, vänliga relationer som en hjälp för dem att få ökad egenmakt ochkontroll i vardagslivet. Resultatet visar på patienternas långvariga kamp med ett vardagslivmed ständig känslomässig, psykosocial, existentiell, social och ekonomisk oro. Resultatetpekar också på en brist på patientcentrerad organisation och psykosocial rehabilitering, därvårdpersonal stödjer patienters inre styrka och hälsoresurser. Förhoppningen är att resultatetkan leda till en ökad förståelse hos vårdpersonal för hur vardagslivet kan upplevas då man haren huvud- hals cancer, för att på så vis ge adekvat hjälp till dessa patienter och derasnärstående.

Place, publisher, year, edition, pages
Nordic School of Public Health NHV Göteborg, Sweden, 2010. 74 p.
Series
NHV Reports and Doctor of Public Health-Theses, ISSN 0283-1961 ; NHV Report 2010:8
Keyword
Head and neck cancer, public health, health promotion, empowerment, qualitative methods, everyday living, nursing, Huvud - halscancer, folkhälsa, hälsofrämjande, egenmakt, kvalitativa metoder, levda erfarenheter, omvårdnad
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:norden:org:diva-3714 (URN)978-91-85721-93-1 (ISBN)
Public defence
2010-10-12, Nordic School of Public Health NHV, Göteborg, Sweden, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2015-02-09 Created: 2015-02-05 Last updated: 2015-02-09Bibliographically approved

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