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.