Purpose: As recovery time after oncological surgery can be long, family caregivers often play an important role in the delivery of care after patients’ discharge. To prepare carers for this role, we developed a family involvement program (FIP) to enhance their active involvement in post-surgical oncology care during hospitalization. The purpose of this qualitative study was to explore family caregivers experience of participating in a FIP. Methods: We conducted semi-structured interviews with 12 family caregivers who participated in the family involvement program. The program is comprised of two main components (1) training and coaching of physicians and nurses; (2) active involvement of family caregivers in fundamental care activities. This active involvement included six activities. Data were analyzed using interpretative phenomenological analysis. Results: Family caregivers positively valued the program. Active participation in post-surgical care was experienced as an acceptable burden. The program gave participants the ability to simply be present (‘being there’) which was considered as essential and improved their understanding of care, although family caregivers sometimes experienced emotional moments. Active involvement strengthened existent relationship between the family caregiver and the patient. Participants thought clinical supervision. by nurses is important. Conclusions: Physical proximity appeared as an essential part of the family involvement program. It helped carers to feel they made a meaningful contribution to their loved ones’ wellbeing. Asking families to participate in fundamental care activities in post-surgical oncology care was acceptable, and not over-demanding for caregivers.
Background: Traumatic brain injury (TBI) is in the developed countries the most common cause of death and disability in childhood. Aim: The purpose of this study is to estimate the incidence of TBI for children and young people in an urbanised region of the Netherlands and to describe relevant characteristics of this group. Methods: Patients, aged 1 month - 24 years who presented with traumatic brain injury at the Erasmus University Hospital (including the Sophia Children's Hospital) in 2007 and 2008 were included in a retrospective study. Data were collected by means of diagnosis codes and search terms for TBI in patient records. The incidence of TBI in the different referral areas of the hospital for standard, specialised and intensive patient care was estimated. Results: 472 patients met the inclusion criteria. The severity of the Injury was classified as mild in 342 patients, moderate in 50 patients and severe in 80 patients. The total incidence of traumatic brain injury in the referral area of the Erasmus University Hospital was estimated at 113.9 young people per 100.000. The incidence for mild traumatic brain injury was estimated at 104.4 young people, for moderate 6.1 and for severe 3.4 young people per 100.000. Conclusion: The ratio for mild, moderate and severe traumatic brain injury in children and young people was 33.7e1.8e1.In the mild TBI group almost 17% of the patients reported sequelae. The finding that 42% of them had a normal brain CT scan at admission underwrites the necessity of careful follow up of children and young people with mild TBI.
The number of people who combine work and unpaid care is increasing rapidly as more people need care, public and private care systems are progressively under pressure and more people are required to work for longer. Without adequate support, these working carers may experience detrimental effects on their well-being. To adequately support working carers, it is important to first understand the challenges they face. A scoping review was carried out, using Arksey and O’Malley's framework, to map the challenges of combining work and care and solutions described in the literature to address these challenges. The search included academic and grey literature between 2008 and 2018 and was conducted in April 2018, using electronic academic databases and reference list checks. Ninety-two publications were mapped, and the content analysed thematically. A conceptual framework was derived from the analysis which identified primary challenges (C1), directly resulting from combining work and care, primary solutions (S1) aiming to address these, secondary challenges (C2) resulting from solutions and secondary solutions (S2) aiming to address secondary challenges. Primary challenges were: (a) high and/or competing demands; (b) psychosocial/-emotional stressors; (c) distance; (d) carer's health; (e) returning to work; and (f) financial pressure. This framework serves to help those aiming to support working carers to better understand the challenges they face and those developing solutions for the challenges of combining work and care to consider potential consequences or barriers. Gaps in the literature have been identified and discussed.
