How do adults with cystic fibrosis cope following a diagnosis of diabetes?

Title. How do adults with cystic fibrosis cope following a diagnosis of diabetes? Aim. This paper is a report of a study examining the experience of adults with cystic fibrosis in adapting to the diagnosis of diabetes, a second chronic illness. Background. Diabetes is a common complication of cystic fibrosis; the onset signifies the development of a second chronic illness. Both cystic fibrosis and diabetes are complex conditions, which require daily treatment schedules as part of their management. However, it is unclear how people already living with cystic fibrosis respond to the diagnosis of diabetes. Method. A qualitative method was chosen to obtain an ‘insider’ experience of adjusting to a second chronic illness. Semi‐structured interviews were conducted in 2004 with 22 adults with cystic fibrosis‐related diabetes. The data were analysed using interpretative phenomenological analysis. Findings. Four recurring themes were identified: emotional response to diagnosis of diabetes, looking for an understanding, learning to live with diabetes, and limiting the impact of diagnosis. Having cystic fibrosis appeared helpful in limiting the impact of the diagnosis of diabetes. Juggling conflicting dietary demands of cystic fibrosis and diabetes coupled with the lack of practical professional advice available was seen as one of the biggest challenges in adapting to diabetes. Conclusion. Healthcare professionals need increased awareness of diabetes amongst adults with cystic fibrosis and provide adequate support and structured evidence‐based education throughout the course of the illness, particularly in relation to diet. Nevertheless, patients’ familiarity with regular daily routines and problem‐solving attitudes, already developed in the context of cystic fibrosis, may be drawn on to limit the impact of diabetes.     

Community-based care in cystic fibrosis: role of the cystic fibrosis nurse specialist and implications for patients and families

Summary

Improved survival for cystic fibrosis has rapidly increased over the past four decades, with patients now living well into adult life. With changes in the structure of the National Health Service and the formation of provider units and general practitioner (GP) fund-holding practices, it is important to strengthen links between the hospital and community teams to ensure that the CF patient receives adequate care. Increasingly, treatment is being carried out at home, and this emphasis on home-based therapy demands that parents/carers and patients must acquire the skills and knowledge of complex therapies in order to optimize health. It is the role of the CF nurse specialist (NS) to educate those who will deliver the care, co-ordinate the provision of services at home, liaise with the CF team and community health-care professionals and to support the patient and their carers.     

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 pofessional 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.

     

Pharmaceutical intervention in the care of cystic fibrosis patients

In a prospective, randomised, cross-over study including cystic fibrosis patients with indications for HIVAT (home intravenous antibiotic treatment) the prospect of pharmaceutical intervention was investigated. A comparison between the use of disposable infusion devices with antibiotics from the pharmacy and when the patients prepared the drugs themselves was performed. During a first treatment course the patients received either infusion devices during 5 days or reconstituted the drugs themselves during 5 days, or vice versa. During a second treatment course the order was the reversed. Eight patients were included, out of which six completed the original design as a cross-over study, yielding a total of 550 doses of antibiotics. The patients preferred infusion devices from the pharmacy prepared according to GMP (Good Manufacturing Practice) as opposed to reconstituting the antibiotics themselves. Points of view presented included no anxiety over the correct dosage of drugs and less disruption of family and social life. In a practical sense, portable devices are more expensive than the preparation of the drugs by the patients themselves. However, when comparing with in-hospital treatment the direct costs for a hospital stay exceed that of the devices. Another part of the study evaluated the quality of life using a modified form of SEIQoL-DW (Schedule for the Evaluation of Individual Quality of Life - Direct Weighting). Twenty patients took part in the study and the overall quality of life scores increased significantly when patients received infusion devices compared to reconstituting the drugs themselves.     

Practice nurses and the facilitation of self-management in primary care

Title. Practice nurses and the facilitation of self‐management in primary care. Aim. This paper is a report of a study to explore practice nurse involvement in facilitation of self‐management for long‐term conditions. Background. In the United Kingdom chronic disease services have shifted from secondary care to general practice and from general practitioners to practice nurses. A new United Kingdom General Practice contract requires adherence to chronic disease management protocols, and facilitating self‐management is recognized as an important component. However, improving self‐management is a relatively new focus and little is known about the ways in which nurses engage with patient self‐management and how they view work with patients in chronic disease clinics. Method. Semi‐structured interviews with 25 practice nurses were carried out in 2004–2005. Interviews were audio‐taped and transcribed verbatim. Analysis was informed by the ‘trajectory model’ and ‘personal construct’ theories. Findings. Main themes in the early stages of work with patients were: categorization of patients, diagnosis, and patient education. First impressions appeared to determine expectations of self‐management abilities, although these were amenable to change. Intermediate stages were ‘ways of working’ (breaking the task down, cognitive restructuring and addressing dissonance, modelling ‘good’ behaviour, encouragement, listening, involving carers and referral) and maintaining relationships with patients. However, in the longer‐term nurses seemed to lack resources beyond personal experience and intuitive ways of working for encouraging effective self‐care. Conclusion. The ways of working identified are unlikely to be sufficient to support patients’ self‐management, pointing to a need for education to equip nurses with techniques to work effectively with patients dealing with longer‐term effects of chronic illness.     

Evaluating the needs of children with asthma in home care: the vital role of nurses as caregivers and educators

To date, few evaluations have examined issues specific to children's asthma management in their homes. This study examined the characteristics, risk factors, and needs of children with asthma, and the impact of home health nurses on improving parents'/family caregivers' knowledge about asthma triggers and management. The medical records of children, 相似文献   

Stresses and coping strategies of mothers living with a child with cystic fibrosis: implications for nursing professionals

BACKGROUND: Cystic fibrosis (CF) is the most common inherited disease of childhood. Caring for a child with CF is stressful and this has implications for the main carer, the parental relationship, well siblings, family functioning as well as the affected child. AIM: This study aimed to explore current stresses and coping strategies used by mothers and to identify roles and strategies that nursing professionals could extend or adopt to support them and families of children with CF. METHOD: Semi-structured interviews were carried out with 17 mothers of children with CF who attended the regional cystic fibrosis hospital clinic. Interviews were analysed using the Framework method of analysis. FINDINGS: The study suggests that major stresses for many mothers are feeling in the middle in terms of decision-making particularly concerning the genetic implications of CF, the burden of responsibility for parenting a child with a chronic illness, and coming to terms with a personal change in identity. The most commonly used coping strategy was seeking support from others including nursing professionals. Relationships with health professionals in secondary care were generally positive, with nurses often the first people mothers turned to when they had concerns and also key in interpreting medical information. Relationships with primary care health professionals appeared to be more limited with a role reversal described by some mothers who felt it their responsibility to educate and inform primary care professionals about CF. CONCLUSIONS: This study suggests that nursing professionals in primary and secondary care need to look beyond the care of the child to the needs of the mother. It provides evidence to suggest that nursing professionals in primary and secondary care have a number of important roles to play as holders of hope, bridge builders and in providing continuity of care for such families. It also suggests strategies to strengthen nurse-patient relationship.     

Comparison of hospital and home intravenous antibiotic therapy in adults with cystic fibrosis

Aim and objective. This study aimed to compare home and hospital treatment for clinical outcome and quality of life in adult cystic fibrosis patients receiving i.v. antibiotics for acute respiratory exacerbations. Background. Cystic fibrosis patients require intravenous (i.v.) antibiotic therapy to treat acute respiratory exacerbations. Traditionally, patients would be admitted to hospital to complete a 14‐day course of i.v. antibiotics. The option of home i.v. antibiotic therapy for acute respiratory exacerbations has become an expectation of cystic fibrosis patients. Design and method. Comparison of hospital and home i.v. antibiotic therapy in adults with cystic fibrosis for clinical outcomes and quality of life was studied using a quasi‐experimental design. A pre‐ and post‐test was used to measure clinical outcomes of forced expiratory volume in one second (FEV₁), forced vital capacity (FVC), oxygen saturations (SaO₂), body mass index (BMI) and quality of life using the Cystic Fibrosis Quality of Life (CFQoL) questionnaire. Results. Thirty adult cystic fibrosis patients (15 hospital and 15 home) were recruited to the study once they had chosen where they undertook their treatment. When the groups were compared for clinical outcomes, the hospital group showed greater improvement in FVC. There were no differences in quality of life when the hospital and home groups were compared, although changes achieved with treatment showed differences. In the home group, there were improvements in all nine quality of life domains, with statistically significant improvement in five domains, whereas in the hospital group there were improvements in eight out of nine quality of life domains, with only two showing statistically significant improvement. Relevance to clinical practice. Lung function improved more in the hospital group, suggesting that acute respiratory exacerbations were not as effectively treated at home, although there appeared to be greater quality of life when undertaking home treatment. The CFQoL questionnaire was able to detect transient changes in health status during the course of i.v. antibiotics. Conclusion. If the patient's right to choose where they receive treatment is to be supported, taking into account quality of life further research is required to determine the reasons for home care being less clinically effective in treating acute respiratory exacerbations in cystic fibrosis patients.     

Contemporary psychosocial issues in cystic fibrosis: treatment adherence and quality of life

Summary

This review focuses on the two major psychosocial areas currently topical in cystic fibrosis research: treatment adherence and quality of life. First, the paper discusses the importance of evaluating adherence to treatments and medical advice, its measurement, predictors of adherence and non-adherence and whether the data should be used to inform clinical practice and policy decisions. Second, the purpose of evaluating quality of life in cystic fibrosis and an overview of the data are discussed. Both areas have suffered from problems with terminology and definition, inappropriate methodologies and hence difficulties with data interpretation. Future directions for research are advocated.     

Collaboration and control: nurses' constructions of the role of family in nursing home care

AIM: This paper reports a study examining how nursing home staff experienced working with residents' families. BACKGROUND: Working collaboratively with the family in residential aged care to provide care is consistent with nursing philosophy. The quality of the experience, however, is frequently fraught with problems for both the family and staff involved. Little research has focused on the nature of family involvement in nursing homes from the perspective of nursing home staff. METHODS: The study adopted a naturalistic paradigm. Data were collected from 30 nursing home staff members drawn from a range of metropolitan and rural facilities in Victoria, Australia by means of conversational in-depth interviews. Issues concerned with how participants constructed the role of the family in the nursing home were explored. The data were collected in 2001-2002. RESULTS: Four key elements are presented in this paper: (1) Making the transition; (2) Forming ties; (3) Keeping them at a distance and (4) Unacceptable behaviour. Some nursing home staff have developed a substantive family orientation and had adopted practices which were inclusive of the family. Equally, many attitudes which cast the family into an adversarial and competitive role were noted, and many staff members outlined practices which were indicative of a need to control the family. CONCLUSION: A rhetoric of family partnerships is prevalent in some nursing homes. The activities of staff in these homes are still primarily geared towards provision of physical care, and families' needs become secondary to getting the work done. A new model of practice is needed that sees working collaboratively with families as a legitimate and necessary part of the staff role.     

Parents as partners: investigating the role(s) of mothers in coordinating health and education activities for children with chronic care needs

Interprofessional collaboration (IPC) between health professionals, and educators is an essential component of academic success and well-being for children who experience chronic illnesses. This study sought to understand parents’ roles in and perceptions of IPC between their child’s healthcare professionals and educators. We recruited 23 mothers to participate in our study. Data were analyzed using a combination of univariate analyses and content analysis. Overall, parents reported that they could effectively communicate their child’s health and educational needs with health and educational professionals, but statistical analysis determined moderately increased challenges presenting information across professions. Most participants (n = 19) indicated that IPC between health and educational professionals could be improved. Effectively engaging parents as partners in IPC can promote more seamless collaboration and communication of a child’s needs and offer a greater likelihood of achieving a child’s health and educational goals.     

Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers

It is increasingly common that cancer patients are cared for at home at the end of life, with help from advanced home care teams. This may have positive implications for cancer patients and their families, but it may also be burdensome to the family caregivers with implications for their health and well-being. This qualitative study was therefore initiated to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer, enrolled in advanced palliative home care units. Ten interviews were conducted with 11 family caregivers at enrollment to the home care unit. A form of constant comparative analysis was used to generate two main themes from the data. One theme concerned the role transition into becoming a family caregiver, whereas the other theme relates to the transition to a new life situation of the caregiver (him/herself). The family caregivers describe themselves as the persons primarily bearing responsibility and providing care for their dying relatives. They were found to have many concerns about their own situation, especially in regard to issues temporally after the death of the patient, but seemed to have few expected sources of support related to these concerns. Professional support is described as expected primarily for care-related tasks, although hopes may be expressed about support in other areas. The distinction between resources described as existing in theory and those used in practice also are apparent in analysis of the interviews. If home care is to be a positive alternative to hospital care, individual expectations should be considered when planning supportive care.