Development of a 22q11DS psycho-educational programme: exploration of the views, concerns and educational needs of parents caring for children or adolescents with 22q11DS in relation to mental health issues.

BACKGROUND: 22q11.2 deletion syndrome (22q11DS) is a multisystem genetic condition with a broad phenotype. It is associated with a high prevalence of depression and anxiety during childhood and increased risk of schizophrenia in adulthood. Despite this, studies report that families may receive inadequate information of mental health (MH) risks at diagnosis. Therefore, this study investigated parents' experiences of caring for a child with 22q11DS, investigated their knowledge regarding the risk of MH problems and assessed the need for a psycho-educational programme. METHODS: A qualitative design and purposeful sampling was utilized. Parents registered with the '22q11 Ireland' support group, and parents listed on the cleft palate database in a children's hospital in Ireland were invited to participate. Focus groups were held with 22 parents. Data were thematically analysed using Burnard's method of analysis. RESULTS: Most parents had some knowledge of the relationship between 22q11DS and an increased risk of MH issues. Parents reported that MH information relating to 22q11DS was mainly obtained from 22q11DS conferences, the '22q11 Ireland' support group and the Internet. Parents expressed a need for information to prevent or cope with their child's MH issues. Parents suggested that the following topics would be quite useful in a psycho-educational programme. These included information on the early warning signs of MH issues and guidance on when and how to tell the child about the condition and how to manage the child or young person's anxiety, obsessive behaviour or hearing voices. CONCLUSIONS: The findings indicated parental support for a psycho-educational programme that would provide relevant, accurate and timely information on how to effectively care for a child with 22q11DS MH needs.

Health-related quality of life of young people with long-term illnesses before and after transfer from child to adult healthcare.

BACKGROUND: The numbers of children with long-term illnesses surviving into adulthood and transferring from child to adult services has increased dramatically in the last 30 years. This study aimed to examine health-related quality of life pre- and post-transfer from child to adult healthcare for young people with three long-term illnesses. METHODS: A total of 217 young people with cystic fibrosis, congenital heart defects or diabetes attending child and adult hospital services in Dublin, Ireland completed a questionnaire survey. Multiple linear regression was used to identify predictors of five dimensions of health-related quality of life pre- and post-transfer. RESULTS: Post-transfer young people with congenital heart disease and diabetes reported significantly lower physical well-being than their pre-transfer counterparts. Pre-transfer young people with cystic fibrosis reported significantly lower physical well-being than those with diabetes, but there was no significant difference post-transfer. Pre-transfer females reported lower scores than males on the Psychological Well-being and Autonomy and Parent Relation dimensions; however, these differences disappeared post-transfer. Higher maternal overprotection scores were associated with significantly lower scores on the Psychological Well-being, Autonomy and Parent Relation, and Social Support and Peers dimensions, regardless of transfer status. CONCLUSIONS: Disease group, gender and maternal overprotection were predictors of health-related quality of life pre- and post-transfer from child to adult healthcare. Transition programmes should promote self-management and discourage parental overprotection.

An e-health intervention to support the transition of young people with long-term illnesses to adult healthcare services: Design and early use.

OBJECTIVE: Co-design information and website to support adolescents and young adults with long-term illnesses in their transition to adult healthcare. METHODS: A participatory iterative process involving a survey (n=207), twenty-one interviews, six participatory workshops, six video recordings, two advisory groups, and a co-design group to identify needs and preferences for e-health and information provision, was used to develop an appropriate intervention. RESULTS: Adolescents and young people expressed preferences for information that was trustworthy, empowering, colorful, easily downloaded online and written using non-patronizing language. They desired video testimonials of experiences from young adults who had transitioned to adult healthcare and wanted advice about becoming more independent, managing their condition, preparing for the transition, and information about medications and the differences between child and adult healthcare. They also wanted information about the location and configuration of adult healthcare, key hospital personnel, and frequently asked questions. CONCLUSION: The participatory iterative process led to the development of an online resource specifically tailored to the adolescents and young people's transition needs and information preferences. Preliminary feedback indicates that it is a valued resource. PRACTICE IMPLICATIONS: The www.SteppingUP.ie website has the potential to help prepare its target population group for the transition to adult healthcare.

Information-sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange.

This study examined participants' views on children's participation in information-sharing and communication interactions. A descriptive qualitative approach was taken with individual interviews held with children (The term 'children' is used to denote both children and adolescents and to avoid cumbersome repetition.) aged 7-16 years (n = 20), their parents (n = 22) and healthcare professionals (n = 40) at a children's hospital in Ireland. Data were analysed using the constant comparative method and managed with NVivo (version 8). The findings indicate that professionals strongly supported an open and honest approach to information-sharing; however, this viewpoint was not shared by all parents. The need to maintain hope and spirit and promote an optimistic identity influenced the amount and type of information shared by parents. Children trusted their parents to share information, and valued their parents' role as interpreters of information, advocates, and communication buffers. Most professionals endorsed parents' primacy as managers of information but experienced difficulty navigating a restricted stance. This study adds important insights into the complexities of information-sharing in triadic encounters. Professionals need to maintain an open mind about information-sharing strategies families may choose, remain sensitive to parents and children's information requirements and adopt a flexible approach to information provision.

Adolescents' and parents' views of Child and Adolescent Mental Health Services (CAMHS) in Ireland.

Service user involvement is essential for quality care in the Child and Adolescent Mental Health Services (CAMHS). This study was conducted to explore adolescents' and parents' experiences of CAMHS in relation to accessibility, approachability and appropriateness. This study used a descriptive qualitative design, and focus groups and single interviews were conducted with adolescents (n = 15) and parents (n = 32) from three mental health clinics. Data were analysed using thematic analysis. Accessing mental health services was a challenging experience for many parents and adolescents due to knowledge deficit, lack of information and limited availability of specialist services. Some parents and adolescents reported positive experiences while others reported negative experiences. They expressed a need for more information, involvement in decision making, flexible scheduling of appointments, school support and parent support groups. The nature and quality of the relationship with staff was critical to positive experience with the service; therefore, frequent changes of medical staff was disruptive. Mental health nurses can play a vital role in ensuring continuity, assessing adolescents' participation preferences and advocating for their information needs with other members of the interdisciplinary team.

The experiences and impact of transition from child to adult healthcare services for young people with Type 1 diabetes: a systematic review.

INTRODUCTION: Despite the transition between child and adult services for young people with Type 1 diabetes mellitus being a high-risk period, little is known about the impact of healthcare transition upon young people. METHODS: A systematic review was conducted using PubMed, PsycINFO, CINAHL and EMBASE. Papers published between January 2001 and June 2014 that examined the impact or experiences of healthcare transition in young people with Type 1 diabetes were included. Data were extracted by two independent reviewers and integrated by narrative synthesis. RESULTS: A total of 8990 citations were reviewed and 43 studies were included in the review, 24 of which explored the impact of transition and 24 examined experiences of transition. There were mixed results in terms of the change in glycaemic control and diabetes-related hospitalizations, but all studies assessing attendance found worse attendance post-transition. Data regarding experiences reported that young people and parents experienced greater difficulty in accessing and maintaining diabetes health care. Young people were required to develop independent self-management and self-advocacy skills to navigate the transition and adult health care, but some were inadequately prepared for this. CONCLUSIONS: Although the impact of healthcare transition on outcomes for young people with Type 1 diabetes is unclear due to the paucity of high-quality studies, transition appears to be associated with decreased clinic attendance. There is some preliminary evidence of a positive impact of structured transition programmes. Experiences of healthcare transition illuminate the barriers to smooth transitions and the need for better integration and continuity of care.

Who is in the transition gap? Transition from CAMHS to AMHS in the Republic of Ireland.

OBJECTIVE: The ITRACK study explored the process and predictors of transition between Child and Adolescent Mental Health Services (CAMHS) and Adult Mental Health Services (AMHS) in the Republic of Ireland. METHOD: Following ethical approval, clinicians in each of Ireland's four Health Service Executive (HSE) areas were contacted, informed about the study and were invited to participate. Clinicians identified all cases who had reached the transition boundary (i.e. upper age limit for that CAMHS team) between January and December 2010. Data were collected on clinical and socio-demographic details and factors that informed the decision to refer or not refer to the AMHS, and case notes were scrutinised to ascertain the extent of information exchanged between services during transition. RESULTS: A total of 62 service users were identified as having crossed the transition boundary from nine CAMHS [HSE Dublin Mid-Leinster (n=40, 66%), HSE South (n=18, 30%), HSE West (n=2, 3%), HSE Dublin North (n=1, 2%)]. The most common diagnoses were attention deficit hyperactivity disorder (ADHD; n=19, 32%), mood disorders (n=16, 27%), psychosis (n=6, 10%) and eating disorders (n=5, 8%). Forty-seven (76%) of those identified were perceived by the CAMHS clinician to have an 'on-going mental health service need', and of these 15 (32%) were referred, 11 (23%) young people refused and 21 (45%) were not referred, with the majority (12, 57%) continuing with the CAMHS for more than a year beyond the transition boundary. Young people with psychosis were more likely to be referred [χ 2 (2, 46)=8.96, p=0.02], and those with ADHD were less likely to be referred [χ 2 (2, 45)=8.89, p=0.01]. Being prescribed medication was not associated with referral [χ 2 (2, 45)=4.515, p=0.11]. In referred cases (n=15), there was documented evidence of consent in two cases (13.3%), inferred in another four (26.7%) and documented preparation for transition in eight (53.3%). Excellent written communication (100%) was not supported by face-to-face planning meetings (n=2, 13.3%), joint appointments (n=1, 6.7%) or telephone conversations (n=1, 6.7%) between corresponding clinicians. CONCLUSIONS: Despite perceived on-going mental health (MH) service need, many young people are not being referred or are refusing referral to the AMHS, with those with ADHD being the most affected. CAMHS continue to offer on-going care past the transition boundary, which has resource implications. Further qualitative research is warranted to understand, in spite of perceived MH service need, the reason for non-referral by the CAMHS clinicians and refusal by the young person.

Researching children: some methodological and ethical considerations.

This paper examines some of the methodological issues and ethical considerations in researching children. Collecting data from children raises issues of informed consent, establishing rapport, and privacy and confidentiality. Children's consent to research remains a contentious issue that requires further deliberations. Researchers need to be flexible in their research with children and be cognisant of the strategies that can be used to enhance the quality of responses from children.

Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries?

Sampling is a very complex issue in qualitative research as there are many variations of qualitative sampling described in the literature and much confusion and overlapping of types of sampling, particularly in the case of purposeful and theoretical sampling. The terms purposeful and theoretical are viewed synonomously and used interchangeably in the literature. Many of the most frequent misinterpretations relate to the disparate meanings and usage of the terminology. It is important that the terminology is examined so that underlying assumptions be made more explicit. Lack of shared meanings and terminology in the nursing discourse creates confusion for the neophyte researcher and increases the production of studies with weak methodologies. This paper analyses critically purposeful and theoretical sampling and offers clarification on the use of theoretical sampling for nursing research. The aim is not to make prescriptive statements on sampling; rather, to enhance understanding of the differences between purposeful and theoretical sampling for nursing research.

Chronic illness: the importance of support for families caring for a child with cystic fibrosis.

The effect of chronic life-threatening illness on the family is one of the major problems confronting the health-care system today. Increasingly, parents have the major responsibility for the daily management of their child's condition. There is evidence that many parents lack the professional help and support which could ameliorate some of their problems. It is important that nurses have an understanding of how families cope with the burden of caring for a chronically ill child. Health professionals need clear guidelines on how to support these families in their role as primary care-givers. This paper examines how families of children with cystic fibrosis adapt to the illness in order to provide indicators for nursing practice and to enhance the care and support provided for these families. Effective coping strategies include: assigning meaning to the illness, sharing the burden, denial of diagnosis and incorporating therapy in a schedule.

Parent participation: a concept analysis.

Parent participation has become a central tenet of paediatric nursing in the United Kingdom. The purpose of this paper is to explore the meaning of parent participation, to clarify the concept to benefit children and their families, and to increase understanding among practitioners. The concept analysis utilized was directed by Rodgers' "evolutionary approach' that views concept development as an ongoing dynamic process. A review of British literature and research studies indicated that parent participation is a complex and multi-dimensional concept. In the evolution of parent participation, the terminology changed from "parental involvement' to "partnership in care', to "care-by-parent' and finally to "family-centred care'. The analysis reveals a lack of coherence in the descriptions, with the terminology changing but the underlying theme remaining parent participation. Parent participation can be conceptualized as a composite of attributes that relate to the family, the nurse and their relationships. Those attributes include: negotiation, control, willingness, competence and autonomy. The concept of family-centred care is gradually assuming importance in the literature. This acknowledgement of the family is long overdue. However the concept remains poorly defined and urgent clarification is needed in this area. To adopt a family-centred care approach, a radical paradigm shift is required.

Parental participation in care: a critical review of the literature.

The literature reviewed demonstrates that parental participation is a complex issue which has been viewed mainly in a fragmented manner which does not recognize the integrated holistic nature of parent-nurse partnership. There is a dearth of research which focuses upon parents' perspectives and expectations of participation. Furthermore, there is an assumption that parental participation is unproblematic which precludes the identification of social and environmental constraints. The current level of knowledge about nurses' attitudes regarding parental participation is limited. There is an absence of clear indicators of how parental participation may be facilitated and supported in the institutional setting. It is proposed that further research is required which determines the extent of parental participation and which considers the lived experiences of both the parents and nurses of parental participation. Improved care for children and families could result from efforts directed to those endeavours.

Partnership in care: parents' views of participation in their hospitalized child's care.

This paper describes parents' experiences of participation in their hospitalized child's care on a general surgical paediatric ward. The findings indicate that parents chose to participate because of concern for the child's emotional welfare. Influencing factors included sense of parental duty, past experiences with hospitals, and concern for consistency of care. Parents' readiness to care was encouraged by a supportive family network, support from other parents, familiarity and experience with care. Parents were willing to adapt their parenting skills in order to be able to care for their child at home and were willing to perform more care provided it did not cause pain for the child, had the nurses' approval and increased their confidence and competence as carers. Lack of information, non-negotiation of roles, inadequate facilities, feelings of anxiety and loneliness were the difficulties parents experienced.

Seasonal changes in the circadian variation of oral temperature during wakefulness.

The circadian change of oral temperature in 26 subjects was compiled for December, March and June. Average peak time delays up to 70 min, and a reduced daytime temperature rise were found in June compared with December.