Support for family members in routine outpatient colorectal cancer care : Development of a tailored support model

• The aim of this thesis was to identify how to offer support, tailored to supportivecare needs, for family members in routine outpatient colorectal cancer care. Toachieve this, four studies were undertaken. First, support models for familymembers of persons diagnosed with cancer were mapped in a scoping review.Second, colorectal cancer specialist nurses were interviewed about theirexperiences of supporting family members of persons diagnosed with colorectalcancer. In the third study, family members were interviewed about theirconceptions of their supportive care needs across the colorectal cancer trajectory.In the fourth study, a questionnaire allowing for measurement of unmetsupportive care needs was translated into Swedish and its psychometric propertieswere evaluated in a sample of Swedish family members of persons diagnosedwith colorectal cancer.Findings indicate that existing support models that comprehensively addressfamily members’ supportive care needs are difficult to apply in routine cancercare. In routine colorectal cancer care, support for family members is evident yetunstructured, unequal, universal, and primarily offered at the time of diagnosis.At this phase, family members conceive their needs to be unimportant. Instead,supportive care needs unfold during treatment or survival. However, familymembers suppress their supportive care needs so as not to burden others.Concurrently, cancer specialist nurses avoid penetrating needs due to lack oftools, resources, and knowledge. Thus, unmet supportive care needs may end upunrecognized. Evaluations of the translated and culturally adapted questionnaireshowed promising validity and reliability for measuring unmet needs of supportin a sample of the population under study. Yet, this needs further examination ina larger sample.Findings indicate a need to address discrepancies between support and supportivecare needs, to find tools for uncovering unmet needs and to target thephenomenon that family members suppress their needs. The complexity ofsupporting family members in routine colorectal cancer care needs to be disclosedand reflected upon so support can be operationalized in a way that is equal,applicable, and appropriate. This thesis suggests supporting family membersthrough preparing them for their cancer trajectory, by encouraging recognition ofand acting on emerging needs and by offering information about where to turn ifthat occurs. Building on these actions, persisting unmet needs post treatment canbe screened for and those in need can be offered a counselor. This may help tobridge the gap between psychologically distressed family members andemotional support for the purpose of preventing negative outcomes on health. 

Subject headings

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Omvårdnad (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Nursing (hsv//eng)

Publication and Content Type

vet (subject category)

dok (subject category)