Clinic consultations with children and parents on the dietary management of cystic fibrosis

The aim of this paper is to examine clinic consultations on the dietary management of cystic fibrosis with particular consideration to the role of children.  The role of parents is also examined to determine how their involvement impacts on the role of children during consultations. The data are drawn from interviews with 32 Irish school aged children with cystic fibrosis and their parents, and participant observations during clinic consultations with a sub-group of 21 children. Data were analysed concurrently with data collection using a method of constant comparison, which involved comparing and contrasting incidents in the data to develop themes. Theoretical sampling was used to further explore and develop emergent themes. Discourse analysis was applied to clinic conversations. Children were seen to have little active involvement during consultations leaving them marginalised as conversations were directed at parents primarily and their accounts were privileged over those of children. A surveillance approach to consultations  involving interrogative style questioning and generally closed conversations  was seen to contribute to the marginalised position of children. In addition, dietary advice limited children s involvement because it was of little relevance to children s understandings of being healthy and to the dietary implications of these. The findings highlight a need to acknowledge children as active participants in their dietary care. Implications for developing a child-centred approach to dietary consultations are discussed including implications for working with children towards improved health outcomes of managing CF diet.  

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

Inflammatory bowel disease collectively known as Crohn's 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

Cultural perspectives of interventions for managing diabetes and asthma in children and adolescents for 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 healthcare, 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

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

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. Children's reports on QOL were represented in 3 studies and discrepancies were found between children's and parent's 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

Bowel symptom experiences and management following sphincter saving surgery for rectal cancer: A qualitative perspective

The aim of this research was to explore participants’ qualitative perspectives on bowel symptom experiences and management strategies following sphincter saving surgery for rectal cancer. Methods and sample The data presented in this paper were gleaned from a semi-structured question that formed part of a larger multi-site quantitative correlational study. From a sample of 143 participants, a total of 77 (62.6%) males and 46 (37.3%) females provided qualitative comments. Participants were aged 30–70 years and over, had undergone sphincter saving surgery for rectal cancer in the past 3–42 months. Data were analysed using pre-determined semi-structured categories. Key results The study demonstrated the subjective nature of the bowel symptoms experienced. It also highlighted the bowel symptoms that were most problematic and the effect of these symptoms on participants’ daily lives. In addition, the self-care strategies that worked best for individual participants in the management of bowel symptoms were identified. Conclusions There is a need to educate patients on the short-term as well as the long-term bowel symptoms experienced following sphincter saving surgery for rectal cancer. Nurses have an important contribution to make in facilitating patients to choose from a range of self-care strategies to help them manage their bowel symptoms postoperatively

Challenges in recruiting participants in a multi-centre study on symptom experiences and self care strategies of bowel symptoms following colo-rectal surgery

Aim: The purpose of this paper is to present some of the challenges found to be problematic in recruiting individuals following sphincter saving surgery for rectal cancer for a multicentre study. While the focus of the study is on symptom experiences and management of bowel symptoms following colo-rectal surgery, the paper will concentrate solely on the challenges experienced in recruiting a sample for the study. Background Recruitment of an adequate number of participants is a challenge for researchers in any area of research involving patients. Enrolment of patients treated for rectal cancer poses particular challenges because the total population of this group in a given country can be small. The use of multiple centres was required to obtain the required number of participants for the current study. Findings: In multicentre studies, researchers can encounter substantial challenges in obtaining ethical approval, accessing clinical sites and gaining direct access to patients. These challenges are embedded in a convoluted process involving many systems of communication, which can vary from one centre to another. Conclusions: The process of obtaining ethical approval is prolonged in the absence of a central ethical review committee. A review process based on a standard application for researchers seeking ethical approval for multi- centred studies central is necessary. Establishing and maintaining access to clinical sites requires co-operation from many individuals during the development of the proposal and continuing throughout the data collection process

A theoretical framework to guide a study of patients' bowel symptoms and self-care strategies following sphincter-saving surgery for rectal cancer

A paucity of research is available on patients' bowel symptom experiences and self-care strategies following sphincter-saving surgery for rectal cancer. Most research undertaken to date on patients' bowel symptoms following surgery for rectal cancer has been largely atheoretical. The purpose of this paper is to describe the process of choosing a theoretical framework to guide a study of patients' bowel symptoms and self-care strategies following sphincter-saving surgery for rectal cancer. As a result of a thorough literature review, we determined that the Symptom Management Theory provided the most comprehensive framework to guide our research

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

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

Patients’ bowel symptom experiences and self-care strategies following sphincter-saving surgery for rectal cancer

Aims and objectives: To investigate patients’ bowel symptom experiences and self-care strategies following sphincter-saving surgery for rectal cancer and the relationship between bowel symptom experiences and the self-care strategies used. Background: Earlier diagnosis of rectal cancer allows for less invasive surgical treatments such as sphincter-saving procedures to be performed. Although a permanent stoma is generally not required, patients experience changes in bowel function following this surgery. However, limited research exists on patients’ bowel symptom experiences and the self-care strategies used to manage symptoms following sphincter-saving surgery of rectal cancer. Design: Quantitative descriptive correlational. Methods: A convenience sample of 143 patients aged 30 to over 70 years was used. Data were collected (April 2010–December 2010) using the Illness Perception Questionnaires, the Difficulties of Life Scale and a researcher developed Self-care Strategy Measure. The research was underpinned by the Symptom Management Theory. Findings: Relating to the four most effective self-care strategies used respondents reporting more bowel symptom were more likely to use the self-care strategy proximity/knowing the location of a toilet at all times. Females, respondents with high timeline cyclical scores and respondents with high physiological responses scores were more likely to use protective clothing. Respondents reporting more bowel symptom and with high social responses scores were more likely to use bowel medication. Females were more likely to wear incontinence pads. Conclusion: This research provides insights into the daily bowel symptom experiences of patients following sphincter-saving surgery for rectal cancer. It demonstrates the range of self-care strategies that individuals use to manage their bowel symptoms and the self-care-strategies that were most effective for them. Relevance to clinical practice: Patients should be encouraged to report on-going bowel problems following sphincter-saving surgery for rectal cancer. Supportive care for patients should be comprehensive and tailored to meet individual needs