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Background: The care policy and organization of the care sector is shifting to accommodate projected demographic changes and to ensure a sustainable model of health care provision in the future. Adult children and spouses are often the first to assume care giving responsibilities for older adults when declining function results in increased care needs. By introducing policies tailored to enabling family members to combine gainful employment with providing care for older relatives, the sustainability of the future care for older individuals in Norway is more explicitly placed on the family and informal caregivers than previously. Care recipients and informal caregivers are expected to take an active consumer role and participate in the care decision-making process. This paper aims to describe the informal caregivers' experiences of influencing decision-making at and after hospital discharge for home-bound older relatives., Methods: This paper reports findings from a follow-up study with an exploratory qualitative design. Qualitative telephone interviews were conducted with 19 informal caregivers of older individuals discharged from hospital in Norway. An inductive thematic content analysis was undertaken., Results: Informal caregivers take on comprehensive all-consuming roles as intermediaries between the care recipient and the health care services. In essence, the informal caregivers take the role of the active participant on behalf of their older relative. They describe extensive efforts struggling to establish dialogues with the "gatekeepers" of the health care services. Achieving the goal of the best possible care for the care recipient seem to depend on the informal caregivers having the resources to choose appropriate strategies for gaining influence over decisions., Conclusions: The care recipients' extensive frailty and increasing dependence on their families coupled with the complexity of health care services contribute to the perception of the informal caregivers' indispensable role as intermediaries. These findings accentuate the need to further discuss how frail older individuals and their informal caregivers can be supported and enabled to participate in decision-making regarding care arrangements that meet the care recipient's needs.

This paper describes the participation of informal caregivers in the discharge process when patients aged 80 and over who were admitted from home to different hospitals in Norway were discharged to long-term community care. Data for this cross-sectional survey were collected through telephone interviews with a consecutive sample of 262 caregivers recruited between October 2007 and May 2009. The Discharge of Elderly Questionnaire was developed by the research team and was designed to elicit data concerning informal caregivers' self-reported perceptions on participation in the discharge process. A descriptive and comparative analysis of Thompson's levels of participation reported by the older generation (spouses and siblings) and the younger generation (adult children and children-in-law, nieces and grandchildren) was undertaken using bivariate cross-tabulations and chi-square tests for association and trend. Analyses showed that the younger generation of caregivers received and provided information to hospital staff to a greater degree than the older generation. Overall, 52% of the informal caregivers reported co-operating with the staff to a high or to some degree. A multivariate logistic regression analysis was used to analyse factors predicting the likelihood of informal caregivers reporting co-operation with hospital staff. The odds of younger generation caregivers reporting co-operation were more than twice as high (OR = 2.121, P = 0.045) as the odds of the older generation. Caregivers of patients with a hearing impairment had higher odds of reporting co-operation (OR = 1.722, P = 0.049) than caregivers of patients with no such impairment. The length of hospital stay, the caregiver's and patient's gender and education level were not significantly associated with caregiver's co-operation. The informal caregivers' experiences with information practices and user participation in hospitals highlight important challenges that must be taken seriously to ensure co-operation between families and hospitals when elderly patients are discharged back to the community., (© 2013 John Wiley & Sons Ltd.)