Participation, challenges and needs in children with down syndrome during cancer treatment at hospital: a qualitative study of parents' experiences

BackgroundStudies report that it can be challenging to assess and treat side-effects and symptoms among children who have impairments and difficulties in expressing their needs. Children with Down syndrome have an increased vulnerability and an increased risk for contracting leukaemia. There is sparse knowledge about the parental experience of how treatment and side-effects affect children with Down syndrome with leukaemia, as well as the role of participation during treatment.PurposeThis study aimed to explore the perceptions of parents of children with Down syndrome and leukaemia regarding their child's treatment, side effects and participation during hospital care.MethodsA qualitative study design was used, and interviews were conducted with a semi-structured interview-guide. Fourteen parents of 10 children with Down syndrome and acute lymphoblastic leukaemia from Sweden and Denmark, 1–18 years of age, participated. All children had completed therapy or had a few months left before the end of treatment. Data was analysed according to qualitative content analysis.ResultsFour sub-themes were identified: (1) Continuously dealing with the child's potential susceptibility; (2) Confidence and worries regarding decisions related to treatment regulation; (3) Challenges in communication, interpretation, and participation; and (4) Facilitating participation by adapting to the child's behavioural and cognitive needs. The sub-themes were bound together in an overarching theme, which expressed the core perception “Being the child's spokesperson to facilitate the child's participation during treatment”. The parents expressed this role as self-evident to facilitate communication regarding the needs of the child, but also regarding how the cytotoxic treatment affected the vulnerable child. Parents conveyed the struggle to ensure the child's right to receive optimal treatment.ConclusionThe study results highlight parental challenges regarding childhood disabilities and severe health conditions, as well as communication and ethical aspects regarding to act in the best interests of the child. Parents played a vital role in interpreting their child with Down syndrome. Involving parents during treatment enables a more accurate interpretation of symptoms and eases communication and participation. Still, the results raise questions regarding issues related to building trust in healthcare professionals in a context where medical, psychosocial and ethical dilemmas are present

Participation, challenges and needs in children with down syndrome during cancer treatment at hospital: a qualitative study of parents' experiences

BackgroundStudies report that it can be challenging to assess and treat side-effects and symptoms among children who have impairments and difficulties in expressing their needs. Children with Down syndrome have an increased vulnerability and an increased risk for contracting leukaemia. There is sparse knowledge about the parental experience of how treatment and side-effects affect children with Down syndrome with leukaemia, as well as the role of participation during treatment.PurposeThis study aimed to explore the perceptions of parents of children with Down syndrome and leukaemia regarding their childs treatment, side effects and participation during hospital care.MethodsA qualitative study design was used, and interviews were conducted with a semi-structured interview-guide. Fourteen parents of 10 children with Down syndrome and acute lymphoblastic leukaemia from Sweden and Denmark, 1-18 years of age, participated. All children had completed therapy or had a few months left before the end of treatment. Data was analysed according to qualitative content analysis.ResultsFour sub-themes were identified: (1) Continuously dealing with the childs potential susceptibility; (2) Confidence and worries regarding decisions related to treatment regulation; (3) Challenges in communication, interpretation, and participation; and (4) Facilitating participation by adapting to the childs behavioural and cognitive needs. The sub-themes were bound together in an overarching theme, which expressed the core perception "Being the childs spokesperson to facilitate the childs participation during treatment". The parents expressed this role as self-evident to facilitate communication regarding the needs of the child, but also regarding how the cytotoxic treatment affected the vulnerable child. Parents conveyed the struggle to ensure the childs right to receive optimal treatment.ConclusionThe study results highlight parental challenges regarding childhood disabilities and severe health conditions, as well as communication and ethical aspects regarding to act in the best interests of the child. Parents played a vital role in interpreting their child with Down syndrome. Involving parents during treatment enables a more accurate interpretation of symptoms and eases communication and participation. Still, the results raise questions regarding issues related to building trust in healthcare professionals in a context where medical, psychosocial and ethical dilemmas are present.Funding Agencies|The research was supported by funding from the Danish Childhood Cancer Foundation. The funding source was by no means involved in the study.; Danish Childhood Cancer Foundation</p

Conceptualizing coastal and maritime cultural heritage through communities of meaning and participation

Coastal zones are historically rich with unique land/seascapes, tangible artifacts, and intangible cultural heritage. Coastal and maritime cultural heritage (CMCH) contends with various constraining conditions of the sea and shore—both geophysical and socially constructed—which we delineate to identify risks and threats to its sustainable management. In response to calls for the greater incorporation of CMCH in the name of regional development and blue growth, we propose a conceptual framework as a means to identify risks and sustainably manage CMCH. We develop the concepts of communities of meaning and communities of participation to address how CMCH is created and contested and identify key considerations for its management. Building on theories of space, place, and identity, the paper constructs communities of meaning in order to elaborate the various opportunities but also tensions in preserving CH and cultivating reliant enterprises as a part of wider regional development strategies. Working from this understanding of place and identity in degrees of inclusivity/exclusivity, the paper draws upon literature on deliberative and participatory governance, framed as communities of participation. These two concepts provide a vocabulary for managers to address calls for the promotion of CMCH and determine appropriate management strategies and governance based on policy objectives and the will of potentially multiple communities of meaning.</p