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Background Parents of children with a chronic kidney disease (CKD) have a crucial role in the management of their child's disease. The burden on parents is high: they are often exhausted, depressed and experience high levels of stress and a low quality of life, which could have a negative impact on their child's health outcomes. Support aiming at preventing and reducing parental stress is essential. Therefore, it is necessary to have insight in the problems and support needs among these parents. Objective Our aim is to describe parents' support needs regarding the problems they experience in having a child with CKD. Methods Five focus group interviews were conducted with parents of children: (i) with hereditary kidney disease, (ii) with nephrotic syndrome, (iii) with chronic kidney failure, (iv) using dialysis and (v) after renal transplantation. The children were treated at a paediatric nephrology unit in one university hospital in the Netherlands. The data were thematically analysed. Results Twenty-one parents participated in the focus groups. Parents need more information about their child's CKD and treatment options, and managing their own hobbies and work. Furthermore, parents need emotional support from their partner, family, friends, peers and healthcare professionals to help them cope with the disease of their child. Additionally, parents need practical support to hand over their care and support in transport, financial management and regarding their child at school. Conclusion Needs regarding balancing their personal life are seldom prioritized by parents as the child's needs are considered more important. Therefore, it is important that healthcare professionals should not only attend to the abilities of parents concerning their child's disease management, but also focus on the parents' abilities in balancing their responsibilities as a caregiver with their own personal life. [ABSTRACT FROM AUTHOR]

Background: Self-management support is essential to perform self-management behavior. To provide this support in an effective way, insight in the needs for self-management support is necessary. Objective: To give an overview of self-management support needs from the perspective of rheumatoid arthritis patients to help nurses to improve self-management. Design: We conducted a scoping review for the period of January 2002 to May 2013 using the following inclusion criteria: (1) studies on adult patients aged 18 years and older, (2) studies from the perspective of rheumatoid arthritis patients, (3) studies reporting results on support needs, and (4) empirical studies using any design. Data sources: We searched in PubMed, CINAHL, and PsycINFO. Review methods: Following the steps of a scoping review, we (1) identified the research question, (2) identified relevant studies, (3) selected studies, (4) charted the data, and (5) collated, summarized, and reported results. We incorporated the optional sixth step of consultation of a multidisciplinary panel of professionals and patients to validate our findings. Results: Seventeen articles were included. Our review shows that rheumatoid arthritis patients have informational, emotional, social and practical support needs. We found an information need for various topics, e.g. exercises and medication. Patients express a need for emotional support in daily life, given through other RA patients, colleagues and supervisors and nurses. For information needs, emotional and social support it is important that it is tailored to the individual needs of the patient. Conclusion: The most important support needs for self-management mentioned by rheumatoid arthritis patients are more informational, social and practical support and emotional support. Considering patients' perspective as a starting point for delivering support for self-management can lead to the development of nursing interventions tailored to the needs of rheumatoid arthritis patients. [ABSTRACT FROM AUTHOR]