Jane Coad

Using art-based techniques in engaging children and young people in health care consultations and/or research

This paper outlines how art-based techniques and activities can applied for use in consultation work and/or research projects with children and young people. First, the concept of what constitutes an art-based activity and how it might be used in consultation and/or research is explored. Following this, three art-based activities of using photographs, drawings/posters or collages and mapping techniques are considered in terms of application to field work. Literature and work undertaken by the author is drawn upon. Critical discussion of using art-based techniques includes pragmatic discussion relating to entering the field, time, resources, collecting the data, settings and feedback.

Parents' and children's communication about genetic risk: a qualitative study, learning from families' experiences

Little is known about how parents explain to their children their risk of inheriting a gene that may cause disease in the child or in the childs future progeny. This study explored how genetic risk information is shared between family members and the factors affecting it, to ascertain the implications for children, young people and their parents to inform future service development and provision. A volunteer group of parents, children (8–11 years) and young people (12+ years) in families affected by or at risk of one of six inherited genetic conditions was interviewed. The semi-structured interviews explored the roles of family members, the language used and the self-reported psychological outcomes in a discussion on genetic risk information. The findings were analysed using grounded theory. A total of 33 families participated, which included 79 individuals. Parents often found discussing genetic risk information very difficult and emotionally painful. Discussions were not usually planned and often a major event prompted parents to finally explain genetic risks to their children; however, children usually preferred to learn about the genetic condition gradually throughout childhood. Parents identified a number of challenges they faced related to talking to children, and many thought health professionals should provide more advice to assist them in providing developmentally appropriate information. We therefore conclude that greater emphasis is required in supporting parents and children in discussing genetic risk information throughout their childs development. Open communication about genetic risks throughout childhood seemed to help children and parents cope better and come to terms with the implications of the genetic condition.

Is children’s choice in health care rhetoric or reality? A scoping review

AIM This paper is a report of a scoping review examining children and young peoples health services with respect to choice in order to inform future development of choice initiatives. BACKGROUND The importance of including children and young people in the choice agenda reflects the increasing acknowledgement that, individually and collectively, they are important consumers of health care in their own right. Data sources. A scoping review of all major health and medical research databases was undertaken using current guidelines to identify original relevant research papers and grey literature sources from 1990 to 2006. REVIEW METHODS Reference Manager software was used to collate, summarize, categorize, store and retrieve the search results. Papers meeting the inclusion criteria were read in full and descriptively summarized using a data extraction sheet. Each paper was repeatedly selected using a snowballing approach until saturation was reached. Results. Children and young people want more say in the planning and development of appropriate hospital and community health services. However, little evaluative research was found about whether these choices are acted upon and lead to more responsive services. CONCLUSION Choice for children and young people is viewed as a positive development in health care and many innovative examples of their involvement in decision-making were found. These illustrated that, given the opportunity, children and young people are willing and able to make decisions about their healthcare services. However, there is a long way to go before the rhetoric of the choice agenda is realized.

Guidance on clinical research involving infants, children and young people: an update for researchers and research ethics committees

A summary of updated practical guidance on ethical issues in relation to research involving children.

'Just in case': the fertility information needs of teenagers and young adults with cancer.

Understanding the reproductive and fertility concerns of teenagers and young adults with cancer (TYA) is one aspect of comprehensive age appropriate care. However, limited options for fertility preservation, coupled with vague policy recommendations, give rise to variations in information-sharing between health care professionals and TYAs, particularly as it involves sensitive discussions regarding the short- and long-term effects of cancer and treatments on fertility and reproduction. This paper presents findings from a wider evaluation at a specialist unit for TYAs with cancer. Forty people participated in semi-structured interviews, including 20 young people, parents and partners. Young people were between 2 months and 4 years from finishing treatment. Most young people received mixed levels of information on fertility and counselling before treatment. Diagnosis in the early teens meant how, and from whom, young people received information varied. Young women tended to receive incomplete information. The majority of young people were unaware of their fertility status after treatment had finished. Findings point to the inherent challenges that exist in ensuring young people aged between 13 and 25 years receive comprehensive information on their fertility and potential risk, as well as advice on how to determine their fertility status after treatment has finished.

Young children's perspectives of ideal physical design features for hospital-built environments

Recently, increased recognition has been attributed to the requirement to include the views of child patients in the planning of new health care services so that contemporary buildings can be designed to enhance future experience. This is important, especially since the voices of young children are so often under-represented or represented through adult proxies. The purpose of this article is to share young children’s perspectives of what constitutes ideal physical design features for hospital-built environments. Using a participatory art-based approach, data were collected from 55 children (aged five–eight years) across three children’s hospitals in Ireland. Emergent findings revealed three broad themes: personal space, physical environment and access. This study is important for nurses, clinicians and environmental designers because it outlines what a supportive child health care environment should constitute. Hospital environments need to be constructed not just to be child friendly, but to also respect children’s right to dignity, privacy, family support and self-control.

Family Communication About Genetic Risk Information: Particular Issues for Duchenne Muscular Dystrophy

Open family communication about genetic conditions and associated risk is important to childrens identity, coping and decision making. Parents however find talking to their children difficult and because of associated care needs and emotional reactions it can be particularly stressful in families affected by Duchenne muscular dystrophy (DMD). This article reports on the findings of a group of families affected by DMD who formed part of a larger study where adult and child members of 33 families affected by one of six genetic conditions were interviewed. Parents thought they should talk to children about a genetic condition in their family and children wanted information and open discussion. In families affected by DMD clear gender differences were identified between mothers and fathers in coping and in their roles in relation to the condition. There was a particularly close bond between mothers and affected sons. For most conditions, mothers were central to giving children information but the identified issues made this problematic in families with DMD. This resulted in affected children receiving little information about their condition at all and female siblings being unlikely to receive information about their potential carrier status until they were about 16‐year old. Insight into family communication within families affected by DMD assists healthcare professionals in recognizing and meeting the particular support needs of this group of families.

Social spaces for young children in hospital

BACKGROUND In the last number of years heightened interest has been attributed to the impact of hospital environments on childrens psychosocial well-being. With policy largely built around adult assumptions, knowledge about what constitutes a child-friendly hospital environment from young childrens perspectives has been lacking. If hospital environments are to aspire to being child friendly then the views of younger aged children must be taken into account. The current study investigated young childrens perspectives of hospital social spaces to inform the design of the built environment of a new childrens hospital. METHODS An exploratory qualitative participatory design was employed. Data were collected through semi-structured interviews (one-to-one and group workshops) which incorporated art-based activities to actively engage young children. Fifty-five young children aged 5 to 8 years with various acute and chronic illnesses were recruited from inpatient, outpatient and emergency departments of three childrens hospitals. RESULTS Young children want a diversity of readily available, independently accessible, age, gender and developmentally appropriate leisure and entertainment facilities seamlessly integrated throughout the hospital environment. Such activities were invaluable for creating a positive hospital experience for children by combating boredom, enriching choice and control and reducing a sense of isolation through enhanced socialization. When in hospital, young children want to feel socially connected to the internal hospital community as well as to the outside world. Technology can assist to broaden the spectrum of childrens social connectivity when in hospital - to home, school and the wider outside world. CONCLUSION While technology offers many opportunities to support childrens psychosocial well-being when in confined healthcare spaces, the implementation and operation of such services and systems require much further research in the areas of ethics, facilitation, organizational impact and evaluation.

The role of support groups in facilitating families in coping with a genetic condition and in discussion of genetic risk information

Background  Giving children and young people information about genetic conditions and associated risk has been shown to be important to their identity, coping and decision making. Parents, however, find talking to their children difficult, and support from health professionals is often not available to them.

Parents' Communication with Siblings of Children Affected by an Inherited Genetic Condition

The objective of this study was to explore parents’ communication about risk with siblings of children affected by an inherited genetic condition, and to ascertain what level of support, if any, is required from health professionals. Semi-structured interviews were conducted with affected and unaffected children and their parents. Families were affected by one of six genetic conditions representing different patterns of inheritance and variations in age of onset, life expectancy and impact on families. Interviews were analysed using constructivist grounded theory and informed by models which focused on three different aspects of family communication. Interviews with 33 families showed that siblings’ information and support needs go largely unrecognized by health professionals and sometimes by parents. Some siblings were actively informed about the genetic condition by parents, others were left to find out and assimilate information by themselves. Siblings were given information about the current symptoms and management of the genetic condition but were less likely to know about its hereditary nature and their own potential risk. When siblings were fully informed about the condition and included in family discussion, they had a better understanding of their role within their family, and family relationships were reported to be more harmonious. The information and support needs of siblings can be overlooked. Parents with the responsibility for caring for a child affected by a genetic condition may require support from health professionals to understand and respond to their unaffected children’s need for more information about the genetic condition and its implications for the children’s own future health and reproductive decision-making.