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Living with head and neck cancer: a health promotion perspective - a qualitative study
Kristianstad University, School of Health and Society. (Integrativ vård och hälsobefrämjande arbete, Avdelningen för Hälsovetenskap)
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 to function in their every day lives – a common, but often overlooked, public health issue. The overall aim of this thesis is to reach a deeper understanding of living with HNC and to identify the experiences that patients felt promoted their health and well-being. It also explores the patients' experiences of contact and care from health professionals and whether these 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 incident technique (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 find power 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 some patients were more vulnerable and felt powerless and faced everyday life with emotional and existential 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 health promoting contact and care built on working relationships with competent health professionals that were available, engaged, respectful, validating, and, above all experienced in 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 of inadequate coordination between phases of their lengthy illness trajectory. They felt lost and abandoned 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. Patients experienced a mutual working relationship during dialoguing and sensed co-operation and equality in encounters with competent health professionals. This could lead to enhanced power and control i.e. empowerment in a patient's everyday life. The findings highlight psychosocial 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 understanding of the psychosocial, existential, social, and economic questions on patients' minds, they could better 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 för personer med huvud – halscancer vardagsliv samt vad som främjar deras hälsa och välbefinnande d v s ett salutogent synsätt. Kroniska sjukdomstillstånd såsom cancer räknas numera till de stora folksjukdomarna och vid huvud – halscancer är vikten av ett fungerande vardagsliv emellertid ett ofta förbisett folkhälsoproblem.

Metod: Avhandlingen omfattar fyra delarbeten baserade på kvalitativa data. Resultaten baseras på semistrukturerade individuella intervjuer (n=53) som riktades till 35 utvalda personer. Den första studien (I) genomfördes i Danmark, Finland, Island, Norge och Sverige och de övriga i Sverige (II, III, IV). Intervjuerna genomfördes vid ett tillfälle (I, II, III) och vid 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 upplevdes som att åka i berg och dalbana mellan hopp och förtvivlan. De ofta livshotande symtomen påminde ständigt om sjukdomen och upplevdes som hot både mot existensen och mot identiteten. Detta till trots kom ibland en stark optimism och tro på framtiden till uttryck. Några av de intervjuades vardagsliv präglades dock av känslomässig och existentiell ensamhet och upplevelser av sårbarhet och maktlöshet. Att ha makt och kontroll över den egna livssituationen liksom närståendes känslomässiga stöd, ibland dygnet runt, främjade hälsan. Hälsofrämjande kontakter med vårdpersonalen upplevdes främst under sjukhusvistelsen. Avgörande var en god och bekräftande patient vårdar relation samt att personalen hade hög kompetens och visade engagemang och respekt i vårdsituationen. Flera av de intervjuade beskrev dock allvarliga brister i kontakten med sjukvården. Upplevelser av brist på respekt och att inte bli trodd i sin sjukdomsupplevelse beskrevs, vilket vanligast i perioderna före och efter sjukhusvistelsen. Samordningen mellan hälso- och sjukvårdens olika funktioner upplevdes som bristfällig under hela sjukdomsförloppet.

Konklusion: Inre styrka, goda relationer med närstående, nära kontakt med naturen, hobbyer och 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 och kontroll i vardagslivet. Resultatet visar på patienternas långvariga kamp med ett vardagsliv med ständig känslomässig, psykosocial, existentiell, social och ekonomisk oro. Resultatet pekar också på en brist på patientcentrerad organisation och psykosocial rehabilitering, där vårdpersonal stödjer patienters inre styrka och hälsoresurser. Förhoppningen är att resultatet kan leda till en ökad förståelse hos vårdpersonal för hur vardagslivet kan upplevas då man har en huvud- hals cancer, för att på så vis ge adekvat hjälp till dessa patienter och deras närstående.

Place, publisher, year, edition, pages
Göteborg: Nordic School of Public Health , 2010. , 77 p.
Series
NHV-rapport, ISSN 0283-1961 ; 2010:8
Keyword [en]
Head and neck cancer, public health, health promotion, empowerment, qualitative methods, everyday living, nursing
Keyword [sv]
Huvud-halscancer, folkhälsa, hälsofrämjande, egenmakt, kvalitativa metoder, levda erfarenheter, omvårdnad
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
URN: urn:nbn:se:hkr:diva-7387ISBN: 978-91-85721-93-1 (print)OAI: oai:DiVA.org:hkr-7387DiVA: diva2:361292
Available from: 2010-11-09 Created: 2010-11-09 Last updated: 2013-11-12Bibliographically approved
List of papers
1. Cancer patients' experiences of nurses' behaviour and health promotion activities: a critical incident analysis
Open this publication in new window or tab >>Cancer patients' experiences of nurses' behaviour and health promotion activities: a critical incident analysis
1999 (English)In: European Journal of Cancer Care, ISSN 0961-5423, Vol. 8, no 4, 204-212 p.Article in journal (Refereed) Published
Abstract [en]

Patients with head and neck cancer report several disease- and health-related problems before, during and a long time after completed treatment. Nurses have an important role in educating/supporting these patients about/through the disease and treatment so that they can attain well-being. This study describes the cancer patients' experiences of nurses' behaviour in terms of critical incidents after nurses had given them care to promote health. The study had a qualitative, descriptive design and the method used was the critical incident technique. Twenty-one informants from the Nordic countries diagnosed with head and neck cancer were strategically selected. It was explained to the informants what a critical incident implies before the interviews took place; this was defined as a major event of great importance, an incident, which the informants still remember, due to its great importance for the outcome of their health and well-being. The nurses' behaviour was examined, and critical incidents were involved in 208 cases-150 positive and 58 negative ones-the number of incidents varying between three and 20 per informant. The nurses' health promotion activities or lack of such activities based on the patients' disease, treatment and symptoms, consisted of informing and instructing the patients as well as enabling their participation. Personal consideration and the nurses' cognisance, knowledge, competence, solicitude, demeanour and statements of understanding were found to be important. Continuous health promotion nursing interventions were of considerable value for the majority of this group of cancer patients. Oncology nurses could reconfirm and update the care of head and neck cancer patients by including health promotion activities in individual care plans. By more frequent use of health promotion models, such as the empowerment model, the nurses could identify and focus on those individuals who needed to alter their life-style as well as tailor their approach towards these patient by setting goals for well-being and a healthy life-style.

Keyword
critical incident technique, head and neck cancer, health promotion, nursing
National Category
Nursing Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:hkr:diva-6413 (URN)10.1046/j.1365-2354.1999.00166.x (DOI)000083697100020 ()10889617 (PubMedID)
Available from: 2010-03-11 Created: 2010-03-11 Last updated: 2010-11-09Bibliographically approved
2. Health promoting contacts as encountered by individuals with head and neck cancer
Open this publication in new window or tab >>Health promoting contacts as encountered by individuals with head and neck cancer
2009 (English)In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9816, Vol. 1, no 3, 261-268 p.Article in journal (Refereed) Published
Abstract [en]

Aim. To describe the characteristics of health promoting contacts with health professionals as encountered by individuals with head and neck cancer. Background. Head and neck cancer has a profound and chronic impact on the individual's everyday life, e.g. physical problems that hinder speaking, breathing, eating and drinking. Furthermore, fear and uncertainty can lead to long-term psychological and psychosocial problems. The National Institute of Public Health in Sweden advocates that all care contacts should improve the quality of the individual's health. Design. A qualitative descriptive and explorative design was used. Eight participants were interviewed in the year 2005 and a qualitative thematic content analysis of the data was performed. Findings. Health promoting contacts were defined as contacts where health care professionals contribute positively to the well-being of individual patients. Characteristics include being available, engaged, respectful and validating. Three themes were identified: being believed in one's illness story; having a working relationship with health professionals and receiving individualised, tailored care. Conclusions. Health promoting contacts were experienced mainly during the treatment phase, when patients had daily contact with specific, qualified health professionals. Although the interview questions focused on health promoting contacts, nearly half of the contacts were experienced as not health promoting. Feelings of abandonment were particularly manifested before and after treatment. The starting point for achieving health promoting contact lies in understanding the patient's lifeworld in relation to health, illness and suffering and focusing on the individual's personal strengths and health resources. Relevance to clinical practice. The findings highlighted the importance of ensuring that patient interests and concerns are core considerations in health care. The participants viewed continuing individualised, tailored care and access to ear, nose and throat healthcare professionals as highly important.

Keyword
head and neck cancer, health professionals, health promoting contacts, individualised tailored care, patient centred care, supportive team
National Category
Nursing Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:hkr:diva-5365 (URN)10.1111/j.1752-9824.2009.01029.x (DOI)
Available from: 2009-12-07 Created: 2009-12-07 Last updated: 2014-08-04Bibliographically approved
3. Health promotion and empowerment from the perspective of individuals living with head and neck cancer
Open this publication in new window or tab >>Health promotion and empowerment from the perspective of individuals living with head and neck cancer
2008 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 12, no 1, 26-34 p.Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to shed light on health promotion from the perspective of individuals living with head and neck cancer. Eight informants were interviewed and latent content analysis was used. Individuals living with head and neck cancer experienced many problems that had a negative impact on their health. One overarching main theme was demonstrated; the ability to regain control and empower oneself. Three themes emerged: (1) Being enabled by dialogue with one's inner self, including three sub-themes: transformed and improved self-esteem, recognising and embracing existentiality, and increased self-determination. (2) Being enabled by means of contact with a social network, including two sub-themes: emotional support and practical support. (3) Being enabled by means of contact with and a passion for the environment, including two sub-themes: nature, hobbies and activities. Empowerment, the goal of health promotion, was understood as an ongoing process, and the ability to promote health varied and was dependent on internal and external enabling of acting and doing. The interpretation of this ongoing process demonstrates interplay assisted by a dialogue with one's inner self, contact with a social network and a passion for the environment. Altogether, these findings may inspire nurses and other health care professionals to support the individual's empowerment process and pose non-pathology-oriented questions such as "what improves your health?" or "what makes you feel good?"

Keyword
Head and neck cancer, health promotion, empowerment, person's perspective, qualitative, nursing
National Category
Nursing Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:hkr:diva-35 (URN)10.1016/j.ejon.2007.09.003 (DOI)000254973600004 ()18023254 (PubMedID)
Available from: 2008-12-22 Created: 2008-12-22 Last updated: 2013-11-12Bibliographically approved
4. Living with head and neck cancer: a profile of captivity
Open this publication in new window or tab >>Living with head and neck cancer: a profile of captivity
2010 (English)In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9816, 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.

Keyword
coordinator, everyday living, head and neck cancer, health promotion, management, qualitative descriptive and interpretive analysis
National Category
Nursing Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:hkr:diva-6414 (URN)10.1111/j.1752-9824.2010.01042.x (DOI)
Available from: 2010-03-11 Created: 2010-03-11 Last updated: 2013-11-12Bibliographically approved

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