Looking after well siblings of adolescent girls with anorexia : an important parental role

Background Research has suggested that well siblings of children with chronic and life-threatening illnesses are at risk for negative outcomes and that parents’ responses to the illnesses can influence the adaptation of well siblings. Yet, parents’ efforts to look after well siblings in the context of illness are rarely considered in literature about sibling adaptation. The importance of attending to the needs of well siblings was a major theme to emerge from a qualitative analysis of the experiences of parents of adolescent girls with anorexia nervosa.

Methods In-depth interviews were conducted with 24 parents of adolescent girls with anorexia and analysed using grounded theory method.

Results The data indicated that parents viewed caring for well siblings in the context of anorexia as an important role and responsibility. Parents reported making conscious and active efforts to look after well siblings by: maintaining normality; compensating for changes to routines; protecting siblings; providing emotional support; and managing the consequences.

Conclusions This paper provides a picture of the actions parents take to help well siblings adapt to anorexia in the family. Further research is needed to develop and expand this understanding to families experiencing a wide range of chronic and life-threatening illnesses. The findings underline the importance of clinical attention and further research into the critical parental role of caring for well siblings.

The management of individuals with bipolar disorder : a review of the evidence and its integration into clinical practice

Bipolar disorder is a common, debilitating, chronic illness that emerges early in life and has serious consequences such as long-term unemployment and suicide. It confers considerable functional disability to the individual, their family and society as a whole and yet it is often undetected, misdiagnosed and treated poorly. In the past decade, many new treatment strategies have been trialled in the management of bipolar disorder with variable success. The emerging evidence, for pharmacological agents in particular, is promising but when considered alone does not directly translate to real-world clinical populations of bipolar disorder. Data from drug trials are largely based on findings that identify difterences between groups determined in a time-limited manner, whereas clinical management concerns the treatment of individuals over the life-long course of the illness. Considering the findings in the context of the individual and their particular needs perhaps besl bridges the gap between the evidence from research studies and their application in clinical practice. Specifically, only lithium and valproate have moderate or strong evidence for use across all three phases of bipolar disorder, Anticonvulsants, such as lamotrigine. have strong evidence in maintenance; whereas antipsychotics largely have strong evidence in acute mania, with the exception of quetiapine, which has strong evidence in bipolar depression. Maintenance data for antipsychotics is emerging but at present remains weak. Combinations have strong evidence in acute phases of illness but maintenance data is urgently needed. Conventional antidepressants only have weak evidence in bipolar depression and do not have a role in maintenance therapy. Therefore, this paper summarizes the efficacy data for treating bipolar disorder and also applies clinical considerations to these data when

Consumer health ICT and the patient in the middle : adopter and/or influencer?

ICT can play a vital role in facilitating quality care and support for people living with chronic illness. Recently, there has been a proliferation of ICT-enabled consumer health devices. These devices can enable individual patients more precise monitoring and control of chronic conditions, and can generate information and statistics for analysis by health professionals. The adoption of the ICT-enabled consumer technologies by patients often relies on the co-adoption of related innovations, work practices, analytical tools and information systems by their health professionals. In healthcare, adoption is influenced by other stakeholders such as health insurers, the patient's family, chronic disease support groups, etc. This paper addresses the individual adoption of ICT-enabled innovations when multiple stakeholders are involved. We report on a case study of the adoption of ICT-enabled “smartpumps” by pregnant women with Type 1 diabetes. We find that the patient should be theorised as adopter, but also as influencer under certain conditions. We develop propositions to explain adoptive behaviour as the adopter/influencer seeks to achieve congruence of interests in a stakeholder network. Our findings help explain why the adoption of ICT-enabled health innovations can occur swiftly in some situations, yet proceed slowly in others.

The delivery of a telephone coaching programme to people with type 2 diabetes by practice nurses in Victoria, Australia : a qualitative evaluation

Aim.  To evaluate telephone coaching undertaken by practice nurses in a randomised controlled trial of self-management support for people with type 2 diabetes.

Background.  Qualitative evaluation of the processes that take place in randomised controlled trials has the advantage of providing information on those variables that contribute to the success or failure of the randomised controlled trial. This additional information can be used to improve or modify chronic disease management programme designs.

Methods.  Grounded theory was used to analyse transcriptions of telephone coaching sessions between practice nurses and patient participants in the randomised controlled trial.

Findings.   Analysis of transcriptions found that patient participants had complex multiple medical conditions to manage, as well as maintaining their daily lives. Two approaches to working with this complexity by practice nurses emerged. We characterised one as ‘treat to target’ and the other as ‘personalised care’. While each approach shapes identities available to patients within the relationship with the practice nurse, the impact or effectiveness of these approaches on outcomes has yet to be reported.

Conclusions.  Telephone coaching takes place in complex social contexts as well as complex medical conditions. People with type 2 diabetes must manage their diabetes care and their care of other conditions within their social contexts. This means a constant negotiation of priorities.

Relevance to clinical practice.  Awareness of how health professional support for patients’ self-management becomes a relationship and element of the negotiated identity of patients is important in adapting clinical guideline-based protocols to achieving targets in the management of chronic illness.

Development of a multi-dimensional measure of resilience in adolescents : the adolescent resilience questionnaire

Background: The concept of resilience has captured the imagination of researchers and policy makers over the past two decades. However, despite the ever growing body of resilience research, there is a paucity of relevant, comprehensive measurement tools. In this article, the development of a theoretically based, comprehensive multidimensional measure of resilience in adolescents is described.

Methods: Extensive literature review and focus groups with young people living with chronic illness informed the conceptual development of scales and items. Two sequential rounds of factor and scale analyses were undertaken to revise the conceptually developed scales using data collected from young people living with a chronic illness and a general population sample.

Results: The revised Adolescent Resilience Questionnaire comprises 93 items and 12 scales measuring resilience factors in the domains of self, family, peer, school and community. All scales have acceptable alpha coefficients. Revised scales closely reflect conceptually developed scales.

Conclusions: It is proposed that, with further psychometric testing, this new measure of resilience will provide researchers and clinicians with a comprehensive and developmentally appropriate instrument to measure a young person’s capacity to achieve positive outcomes despite life stressors.

What are the special needs of chronically ill young people?

Although significant advances have been made in the treatment of serious disease, there remains much scope for assisting young people in adjusting to life with a chronic medical condition. Commonly, chronically ill young people experience lower emotional well being than their healthy peers. Conventional approaches to promoting emotional well being have involved referring young people and their families to an appropriate public mental health service or psychologist/psychiatrist in private practice. However, there is increasing interest in the use of peer support programs. Support groups such as the ChIPS program aim to promote positive adjustment to chronic illness by bring together young people facing similar circumstances. It is maintained that by increasing connections between chronically ill young people, emotional well being can be enhanced.

Learning between schools and hospitals – young people and a curriculum of (dis)connection

As noted in other papers in this volume, a group of health and education researchers and practitioners came together to further develop their understanding of the situation of young people, who were clients of The Royal Children's Hospital Education Institute in 2007 in Melbourne, Australia. The resultant research project, funded by the Australian Research Council Linkage Grant, aimed to understand young people's perspectives on who they are and what matters to them in relation to education connectedness, identity, social relationships, and experiences with professionals. The project team was aware of the persisting patterns of relationships between the hospital, schools, young people, and their families. They were also cognizant of the heavy emphasis in the research and professional literature on evidence from relevant family adults and from health and education professionals. The intention of this project was to put the young people at the centre a study with the stories they told through word and image. Identity issues and school connections framed the analytical work. Thirty-one adolescents dealing with chronic illness participated in this longitudinal qualitative study for a 3-year period of their lives. Given the apparently active role of teachers and health professionals in the lives of these young people, the researchers wanted to include the various relevant adults to see what coherence or lack of coherence existed in the categories, emphases, and values they expressed compared with those of the young people. The researchers have had to determinedly keep their focus on the data from the young people and not be seduced by the familiar and readily accessible data from these professionals. Nonetheless, this data set does provide a ‘curriculum conversation’, which is profitably read behind the stories of the young people and in the foreground of new pathways of curriculum construction. It is this data which informs the work reported in this paper and which has led the researchers to resist the rhetoric of currently held story lines in this field, to see beyond the present hierarchies of power over relevant ‘knowledges’, to maintain a dual focus with the young people at centre stage and the professionals as ‘walk ons /extras’ and to argue for a ‘curriculum of connection’ between young people and the relevant education and health professionals. These issues are readily engaged in arguments for change through the interweaving of larger discourses of inclusivity, curriculum, and policy. This paper works those intersections in the everyday positionings of professionals and young people.

Intergenerational differences in food, physical activity, and body size perceptions among African migrants

We assessed intergenerational differences in food, physical activity, and body size perceptions among refugees and migrants from the Horn of Africa living in Victoria, Australia. We used a qualitative design and obtained data from 48 participants (18 individual interviews; 3 semistructured focus groups). Three major themes emerged: (a) food and physical activity, (b) preference of body size and social expectations, and (c) perceived consequences of various body sizes. For parents, large body size was perceived to equate with being beautiful and wealthy; slimness was associated with chronic illness and poverty. Parents adopted strategies that promoted weight gain in children. These included tailored food practices and restricting children’s involvement in physical activity. For young people, slimness was the ideal body size endorsed by their peers, and they adopted strategies to resist parental pressure to gain weight. Obesity-prevention programs in this subpopulation need to adopt a multigenerational approach.

Cultural understanding of health and adjustment to cardiovascular disease among the Greek elderly

The onset of chronic illness is a major lef event that presents serious challenges for the individual at a micro and macro level. The way in which adaptation to such illness occurs is closely related to cultural and linguistic factors that are an integral part of personal identity. This study presents the health beliefs of elderly Greek Australians and they way in which they understand health and disease. The process by which this population conceptualizes CVD and seeks medical care is discussed in the context of their specific cultural views and attitudes towards illness.

She sleeps

A short dance film screened at the ADF Dancing for the Camera Festival, Durham, NC, 2009.

she sleeps (2009) 3:47
Performed by Jaye Hayes
Camera, editing and sound: Dianne Reid
Created as part of an installation, Yours Truly, a City of Darebin artist-in-residence project for the Art of Difference Festival, Melbourne, 2009. This project examined the public perceptions of difference while exploring the intimate interior lives of five local disabled dancers working in collaboration with director Katrina Rank and filmmaker Dianne Reid. In "she sleeps" performer Jaye Hayes is a dancer navigating chronic illness (CFS).

The role of social support in families coping with childhood brain tumor

Previous studies suggest that support from social networks is a protective factor buffering the negative effects of stressful events, such as having a child with a chronic illness. The literature highlights the need for more systematic examination of parents’ social support networks across the disease trajectory, to obtain a more complete understanding of how a family's support system affects adjustment over time. This was attempted in this study of 88 parents of children with brain tumors, recruited from hospitals in Australia, Singapore, and New Zealand. It employed a longitudinal design, tracking families for 2 years postdiagnosis to examine the relationship between social support and coping. As in previous research this study showed that different types of support are needed at different stages in the illness trajectory. The study also identified the use of various coping strategies by families, directed at the maintenance and enhancement of existing supports and the securing of new supports. The study failed to establish a statistically significant relationship between level of coping and social support, however, suggesting that parents were using primarily “internal” familial modes of coping, including preexisting patterns of coping, with external social support being an adjunct to their coping rather than being a major contributor.

Review of nursing care for patients undergoing percutaneous coronary intervention: a patient journey approach

Aim.  To evaluate the existing literature to inform nursing management of people undergoing percutaneous coronary intervention. Background.  Percutaneous coronary intervention is an increasingly important revascularisation strategy in coronary heart disease management and can be an emergent, planned or rescue procedure. Nurses play a critical role in delivering care in both the independent and collaborative contexts of percutaneous coronary intervention management. Design.  Systematic review. Method.  The method of an integrative literature review, using the conceptual framework of the patient journey, was used to describe existing evidence and to determine important areas for future research. The electronic data bases CINAHL, Medline, Cochrane and the Joanna Briggs data bases were searched using terms including: (angioplasty, transulminal, percutaneous coronary), nursing care, postprocedure complications (haemorrhage, ecchymosis, haematoma), rehabilitation, emergency medical services (transportation of patients, triage). Results.  Despite the frequency of the procedure, there are limited data to inform nursing care for people undergoing percutaneous coronary intervention. Currently, there are no widely accessible nursing practice guidelines focusing on the nursing management in percutaneous coronary intervention. Findings of the review were summarised under the headings: Symptom recognition; Treatment decision; Peri-percutaneous coronary intervention care, describing the acute management and Postpercutaneous coronary intervention management identifying the discharge planning and secondary prevention phase. Conclusions.  Cardiovascular nurses need to engage in developing evidence to support guideline development. Developing consensus on nurse sensitive patient outcome indicators may enable benchmarking strategies and inform clinical trial design. Relevance to clinical practice.  To improve the care given to individuals undergoing percutaneous coronary intervention, it is important to base practice on high-level evidence. Where this is lacking, clinicians need to arrive at a consensus as to appropriate standards of practice while also engaging in developing evidence. This must be considered, however, from the central perspective of the patient and their family.

Treatment response for acute depression is not associated with number of previous episodes: lack of evidence for a clinical staging model for major depressive disorder

Mental illness has been observed to follow a neuroprogressive course, commencing with prodrome, then onset, recurrence and finally chronic illness. In bipolar disorder and schizophrenia responsiveness to treatment mirrors these stages of illness progression, with greater response to treatment in the earlier stages of illness and greater treatment resistance in chronic late stage illness.

Using data from 5627 participants in 15 controlled trials of duloxetine, comparator arm (paroxetine, venlafaxine, escitalopram) or placebo for the treatment of an acute depressive episode, the relationship between treatment response and number of previous depressive episodes was determined. Data was dichotomised for comparisons between participants who had >3 previous episodes (n=1697) or ≤3 previous episodes (n=3930), and additionally for no previous episodes (n=1381) or at least one previous episode (n=4246). Analyses were conducted by study arm for each clinical trial, and results were then pooled.

There was no significant difference between treatment response and number of previous depressive episodes. This unexpected finding suggests that treatments to reduce symptoms of depression during acute illness do not lose efficacy for patients with a longer history of illness.

Challenges in managing elderly people with diabetes in primary care settings in Norway

Objective
To explore the experiences and clinical challenges that nurses and nursing assistants face when providing high-quality diabetes-specific management and care for elderly people with diabetes in primary care settings.

Design
Focus-group interviews.

Subjects and setting
Sixteen health care professionals: 12 registered nurses and four nursing assistants from nursing homes (10), district nursing service (5), and a service unit (1) were recruited by municipal managers who had local knowledge and knew the workforce. All the participants were women aged 32–59 years with clinical experience ranging from 1.5 to 38 years.

Results
Content analysis revealed a discrepancy between the level of expertise which the participants described as important to delivering high-quality care and their capacity to deliver such care. The discrepancy was due to lack of availability and access to current information, limited ongoing support, lack of cohesion among health care professionals, and limited confidence and autonomy. Challenges to delivering high-quality care included complex, difficult patient situations and lack of confidence to make decisions founded on evidence-based guidelines.

Conclusion
Participants lacked confidence and autonomy to manage elderly people with diabetes in municipal care settings. Lack of information, support, and professional cohesion made the role challenging.