BackgroundThe concept of “patient pathways” in cancer care is most commonly understood as clinical pathways, operationalized as standardized packages of health care based on guidelines for the condition in question. In this understanding, patient pathways do not address multimorbidity or patient experiences and preferences. This study explored patient pathways understood as the individual and cultural life course, which includes both life and health events. The overall aim was to contribute to supportive and targeted cancer care.Materials and methodsNine Norwegian patients recently diagnosed with rectal cancer Tumor-Node-Metastasis stage I–III participated in qualitative interviews, five times over 1 year. Five patients later participated in a workshop where they made illustrations of and discussed patient pathways.ResultsPatient pathways including both health and life events were illustrated and described as complex and circular. Stress, anxiety, and depression caused by life events had significant disruptive effects and influenced patient-defined health care needs. The participants experienced the Norwegian public health service as focused on hospital-based standardized cancer care. They expressed unmet health care needs in terms of emotional and practical support in their everyday life with cancer, and some turned to complementary and alternative medicine.ConclusionThis study suggests that acknowledging life course disruption before cancer diagnosis may have significant relevance for understanding complex patient pathways and individual health care needs. Approaching patient pathways as individual and socially constructed may contribute important knowledge to support targeted cancer care.
Temaet er voldsutsatte kvinner fra nordsamiske områder og deres møte med offentlige hjelpetjenester som krisesentre, politiet og arbeids- og velferdsforvaltningen (Nav). Prosjektets målsetting var å få kvinnenes fortellinger om endringen de gjorde gjennom å bryte med sin voldelige partner for så å reetablere seg i en ny livshverdag. I prosessen med å endre sin livssituasjon, uten sin voldelige partner, opplevde kvinnene det de beskrev som en dobbeltydmykelse, spesielt i møte med Nav. Det handler om skam og skyldfølelse for å ha vært utsatt for vold, om taushetskulturen i de samiske samfunn der en holder familierelaterte hendelser innad i slekta, og om risikoen for å bli utfryst fra eget nettverk dersom kvinnen, som i utgangspunktet skal være «sterk», forlater sin mann. Det handler også om arven det samiske folket har med seg fra fornorskningstiden. I møter med Nav opplevde kvinnene liten anerkjennelse, og at de derfor ikke fikk innvilget tilstrekkelig hjelp. Da hjelpen ble avgrenset til arbeidsretting og ikke inkluderte kvinnenes reelle behov, ga møtene deres med Nav inntrykk av at tjenesten opprettholdt en form for strukturell makt. Dette kan gjenkjennes i undertrykkelsen samiske personer har måttet forholde seg til historisk sett.
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