Eileen Savage

Quality of life in children with acute lymphoblastic leukaemia: a systematic review.

Quality of life (QOL) in children with acute lymphoblastic leukaemia (ALL) is now considered an important outcome measure of treatment for this disease. The aim of this paper is to systematically review studies on QOL in children during treatment for ALL with consideration to methodological details and quality of studies, empirical findings on QOL as reported by children and parents, and whether children and parents differ in their reports on QOL. Searches were conducted in biomedical, psychological and behavioural science databases. Six papers met inclusion criteria for review: 4 cross-sectional studies and 2 qualitative studies. There was little consistency in how QOL was measured or qualitatively assessed across studies. The quality of most studies was limited by small sample sizes and cross-sectional designs. Childrens reports on QOL were represented in 3 studies and discrepancies were found between childrens and parents accounts of QOL. There is a need for ongoing research on QOL in children with ALL that use longitudinal designs, large sample sizes, and child reports of QOL. There is a need for theoretical development of the concept of QOL through concept analysis, grounded theory research and empirical validation of developing theory of QOL. Theoretical development of the concept of QOL will contribute to greater clarification of what is meant by QOL than currently exists which in turn has the potential to advance the methodology of measuring this concept in children.

The science of intervention development for type 1 diabetes in childhood: systematic review.

AIM This paper is a report of a review of the science of intervention development for type 1 diabetes in childhood and its implications for improving health outcomes in children, adolescents, and/or their families. BACKGROUND Previous reviewers have identified insufficient evidence to support the application of effective interventions for type 1 diabetes in clinical practice. The need for quality randomized controlled trials to address shortcomings in previous study designs has been highlighted as a priority for future intervention research. However, there is also a need to consider the scientific development of interventions, which to date has received little attention. DATA SOURCE A search for published randomized controlled trials over 5 years (2004-2008) was conducted in electronic databases (Medline, CINAHL, Cochrane Library, Psychinfo, ERIC). Reference lists of papers identified from electronic searches were examined for additional papers. METHODS A systematic review was conducted. Studies were included if (i) an intervention for managing any aspect of type 1 diabetes was implemented, (ii) children, adolescents and/or their families were sampled, (iii) a randomized controlled trial, (iv) published in English. RESULTS Fourteen randomized controlled trials were reviewed on education (n = 7), psychosocial (n = 5) and family therapy (n = 2) interventions. Compared to education interventions, family therapy and most psychosocial interventions were developed with greater scientific rigour, and demonstrated promising effects on more health outcomes measured. CONCLUSION Interventions developed within clearly-defined scientific criteria offer potential for improving health outcomes in children and adolescents with type 1 diabetes and their families. Future reviews on interventions for type 1 diabetes in childhood need to include criteria for assessing the science of intervention development.

Research access to adolescents and young adults

Gaining research access to adolescents and young adults is not straightforward and involves layers of negotiation and administration. Experiences of accessing adolescents and young adults aged 13-21 years are described in this article. Issues raised for consideration are: identifying clinical gatekeepers; seeking ethical approval; making direct contact with adolescents and young adults (hereafter referred to as young people); and dealing with parents as gatekeepers. Refusal rates, participation rates, and reasons are also considered. The issues raised provide practical insights that may be helpful to other researchers aiming to access adolescents and young adults.

Weight and energy: parents’ and children’s perspectives on managing cystic fibrosis diet

Aims: To explore the meanings that parents and children attach to food and eating, and how these influence their approaches to dietary management of cystic fibrosis (CF). Methods: Ethnographic design using in-depth interviews with 32 children with CF (aged 6–14 years) and their parents, and participant observations during visits to CF clinics with a sub-group of 21 children. Data were analysed using the constant comparative method and theoretical sampling was used to further explore and develop emergent themes. Results: Dietary management was found to be a demanding task for children and their parents, and priorities differed between them. A priority of feeding for parents was to protect their children’s long term physical health and survival by keeping their weight up. A challenge for parents was to ensure their children’s cooperation with eating. A priority for children in being healthy was to have energy for physical activities and so energy rather than weight was of immediate relevance to their daily lives. These differences between parents and children gave rise to tensions and conflicts in their interactions with one another in managing diet. Conclusions: Healthcare professionals should take account of the meanings that children and their parents attach to food and eating that can influence their decisions about implementing CF dietary recommendations. The role of children in making food choices has implications for acknowledging them as active participants in their dietary care and for adopting child centred approaches to dietary advice for CF.

Self-care strategies for the management of bowel symptoms following sphincter-saving surgery for rectal cancer.

The primary aim of this article is to identify the self-care strategies that patients use to manage bowel symptoms experienced following sphincter-saving surgery for rectal cancer. Comparisons will be made with self-care strategies used by patients to manage chronic fecal incontinence and the bowel symptoms associated with other chronic bowel diseases, such as irritable bowel syndrome and inflammatory bowel disease. Published studies and conceptual literature from 2000-2010 were the data sources. Three major themes emerged from the literature reflecting the self-care strategies used by patients to manage bowel symptoms: functional self-care strategies (e.g., taking medication), social activity-related self-care strategies (e.g., planning social events), and alternative self-care strategies (e.g., complementary therapies). An analysis of studies highlighted that, through the process of trial and error, patients learned the strategies that were most effective in the management of their bowel symptoms. Knowledge of such strategies will be beneficial to healthcare professionals when educating patients about effective management of bowel symptoms following sphincter-saving surgery.

Symptom burden: A forgotten area of measurement in inflammatory bowel disease

Inflammatory bowel disease (IBD) collectively known as Crohns disease and ulcerative colitis are chronic inflammatory diseases of the digestive tract. Periods of active and inactive disease are common along the trajectory of this illness. A range of symptoms such as fatigue, diarrhoea and abdominal pain are experienced and are often very debilitating in nature resulting in significance interference in daily life. Despite this, to date, research in the area of symptoms remains an underexplored topic. This paper aims to discuss current approaches to symptom assessment in IBD and the potential to measure symptom burden in further research, in order to gain a greater understanding into the experiences of individuals with IBD.Inflammatory bowel disease (IBD) collectively known as Crohns disease and ulcerative colitis are chronic inflammatory diseases of the digestive tract. Periods of active and inactive disease are common along the trajectory of this illness. A range of symptoms such as fatigue, diarrhoea and abdominal pain are experienced and are often very debilitating in nature resulting in significance interference in daily life. Despite this, to date, research in the area of symptoms remains an underexplored topic. This paper aims to discuss current approaches to symptom assessment in IBD and the potential to measure symptom burden in further research, in order to gain a greater understanding into the experiences of individuals with IBD.

Can chronic disease be managed through integrated care cost-effectively? Evidence from a systematic review

BackgroundThe increase in demand for integrated care models to manage chronic disease is a challenge for the Irish health system, which is traditionally organised around the acute hospital services. Implementing integrated care programmes requires significant investment, and thus, their economic impact requires consideration.AimsThis paper updates the previous evidence on the cost-effectiveness of integrated care programmes to support the development of a cost-effective integrated care programme for chronic disease management.MethodsA systematic review of economic evaluations of integrated care programmes for chronic diseases (respiratory, cardiovascular, diabetes and musculoskeletal diseases) was performed using methods guided by the principles of conducting systematic reviews. The evidence was combined and summarised using a narrative synthesis. A meta-analysis of the evidence was not performed due to the heterogeneity of interventions and associated outcomes.ResultsSix studies met the inclusion criteria; no study considered an integrated model of care that dealt with more than one chronic illness. Four chronic conditions were examined: stroke, diabetes, cardiovascular disease and COPD. Three studies were full economic evaluations, and three were partial economic evaluations.ConclusionsThe economic evidence, examined within this review, suggests that integrated care programmes have the potential to be cost-effective, achieving greater health benefits and are less expensive than usual care. Across all the interventions considered, the reduction in inpatient and outpatient admissions was the main contributor to reducing costs.

Symptom burden in inflammatory bowel disease: Rethinking conceptual and theoretical underpinnings

Symptom control is fundamental to the nursing management of inflammatory bowel disease (IBD). However, symptom control can be problematic for individuals with IBD, which could result in symptom burden. Symptom burden is an evolving concept in the discipline of nursing and to date little is known about how the defining characteristics of this concept have been applied to symptom research in IBD. In this discussion paper, the concept of symptom burden and the theory of unpleasant symptoms are explored as a basis for understanding symptom research in IBD. This is followed by a critical examination of previous symptom research in IBD. Our conclusion is that there is a need to rethink conceptual and theoretical underpinnings of symptom burden when researching IBD to take account of its defining characteristics, namely symptom severity, frequency and duration, quality and distress. Research knowledge on these defining characteristics will be important to inform nursing assessment of symptom burden in clinical practice.Farrell D, Savage E. International Journal of Nursing Practice 2010; 16: 437–442 Symptom burden in inflammatory bowel disease: Rethinking conceptual and theoretical underpinnings Symptom control is fundamental to the nursing management of inflammatory bowel disease (IBD). However, symptom control can be problematic for individuals with IBD, which could result in symptom burden. Symptom burden is an evolving concept in the discipline of nursing and to date little is known about how the defining characteristics of this concept have been applied to symptom research in IBD. In this discussion paper, the concept of symptom burden and the theory of unpleasant symptoms are explored as a basis for understanding symptom research in IBD. This is followed by a critical examination of previous symptom research in IBD. Our conclusion is that there is a need to rethink conceptual and theoretical underpinnings of symptom burden when researching IBD to take account of its defining characteristics, namely symptom severity, frequency and duration, quality and distress. Research knowledge on these defining characteristics will be important to inform nursing assessment of symptom burden in clinical practice.

Stress in fathers in the perinatal period: A systematic review

BACKGROUND despite the evidence that fatherhood has a long-term positive and protective effect on mens health, there is also evidence that fatherhood in the perinatal period can be complex and demanding. Due to the potential increase in stressors in the perinatal period, there is reason to hypothesise that it is a time of increased stress for fathers. However, it is not clear how significant a problem stress is for fathers during this stage of life. This is in part, due to the fact that the available research has not been systematically reviewed. PURPOSE the purpose of this systematic review was to critically appraise the empirical evidence that examined stress in fathers in the perinatal period. DESIGN systematic review. METHODS a systematic review protocol was developed and registered with PROSPERO (Reference number: CRD42016035821). The review was guided by the PRISMA reporting process. Electronic databases Medline, CINAHL, the Cochrane Library, PsycARTICLES, PsycINFO, Psychology and Behavioural Sciences Collections were searched to identify studies that met the inclusion criteria. Studies that researched fathers in the perinatal period were included if stress was the principal focus of the research, if stress was in the title and/or aim of the study or if stress was an outcome or dependent variable. Data were extracted and presented in narrative form including tables and figures. FINDINGS eighteen studies met the inclusion criteria. The findings indicate that fathers experience stress in the perinatal period, particularly at the time of birth. Stress levels were found to increase from the antenatal period to the time of birth, with a decrease in stress levels from the time of birth to the later postnatal period. There are a number of factors that contribute to stress in fathers in the perinatal period and these included negative feelings about the pregnancy, role restrictions related to becoming a father, fear of childbirth and feelings of incompetence related to infant care. The review found that stress has a negative impact on fathers, with higher stress levels contributing to mental health issues such as anxiety, depression, psychological distress and fatigue. KEY CONCLUSION during the perinatal period fathers experience stress and face unique stressors that can impact negatively on their health and social relationships.

Cultural perspectives of interventions for managing diabetes and asthma in children and adolescents from ethnic minority groups

Both diabetes and asthma are increasingly being recognized as health problems for ethnic groups. Because of cultural differences, ethnicity is reported to be a risk factor for poorer quality in health care, disease management and disease control. Ethnic groups are at risk for poorer quality of life and increased disease complications when compared with non-ethnic counterparts living in the same country. There is little known about how culture is addressed in interventions developed for ethnic groups. The aim of this paper is to systematically review the cultural perspectives of interventions for managing diabetes and asthma in children, adolescents and/or their families from ethnic minority groups. A total of 92 records were identified that were potentially relevant to this review following which, 61 papers were excluded. The full texts of remaining papers (n= 31) were then read independently by both authors, and agreement was reached to exclude a further 27 papers that did not meet inclusion criteria. A total of four papers were eligible for inclusion in this review. Findings indicate that despite growing concerns about health disparities between ethnic and non-ethnic groups in relation to both asthma and diabetes in childhood, there has been little effort to develop cultural specific interventions for ethnic groups. By systematically reviewing asthma and diabetes interventions we have highlighted that few interventions have been developed from a cultural perspective. There are a limited number of interventions published that add knowledge on the specific elements of intervention that is needed to effectively and sensitively educate other cultures. More work is required into identifying which strategies or components of cultural interventions are most effective in achieving positive health outcomes for children, adolescents and/or their families from ethnic groups.