Use of the nominal group technique to identify stakeholder priorities and inform survey development: an example with informal caregivers of people with scleroderma.

OBJECTIVES: The nominal group technique (NGT) allows stakeholders to directly generate items for needs assessment surveys. The objective was to demonstrate the use of NGT discussions to develop survey items on (1) challenges experienced by informal caregivers of people living with systemic sclerosis (SSc) and (2) preferences for support services. DESIGN: Three NGT groups were conducted. In each group, participants generated lists of challenges and preferred formats for support services. Participants shared items, and a master list was compiled, then reviewed by participants to remove or merge overlapping items. Once a final list of items was generated, participants independently rated challenges on a scale from 1 (not at all important) to 10 (extremely important) and support services on a scale from 1 (not at all likely to use) to 10 (very likely to use). Lists generated in the NGT discussions were subsequently reviewed and integrated into a single list by research team members. SETTING: SSc patient conferences held in the USA and Canada. PARTICIPANTS: Informal caregivers who previously or currently were providing care for a family member or friend with SSc. RESULTS: A total of six men and seven women participated in the NGT discussions. Mean age was 59.8 years (SD=12.6). Participants provided care for a partner (n=8), parent (n=1), child (n=2) or friend (n=2). A list of 61 unique challenges was generated with challenges related to gaps in information, resources and support needs identified most frequently. A list of 18 unique support services was generated; most involved online or in-person delivery of emotional support and educational material about SSc. CONCLUSIONS: The NGT was an efficient method for obtaining survey items directly from SSc caregivers on important challenges and preferences for support services.

Caring for the Patient With Limited Systemic Scleroderma.

Systemic scleroderma (systemic sclerosis) is a rare, autoimmune, collagen-vascular disease of unknown etiology that affects the connective tissues of the skin, internal organs, as well as the small blood vessels. There are 3 subclasses of systemic scleroderma: limited cutaneous, diffuse cutaneous, and sine scleroderma. Prognosis depends on the extent of organ involvement. Complications of systemic scleroderma can involve the cardiovascular, pulmonary, gastrointestinal, renal, integumentary, and the skeletal-muscular systems. Because systemic scleroderma is not common, many orthopaedic nurses may be unfamiliar with how to best provide care. This article provides information about the complexity of the different types of this disease and the basic nursing care of the patient with the most common subclass of systemic scleroderma, limited cutaneous systemic scleroderma.

[The health-within-illness experience: an encounter between the suffering and the power to exist for adults living with systemic scleroderma]. / L'expérience de santé-dans-la-maladie : une rencontre entre la souffrance et le pouvoir d'exister pour des adultes vivant avec a sclérodermie systémique.

This article presents the results of a study whose purpose was to understand and describe the experience of systemic sclerosis as well as that of health-within-illness in adults living with this chronic disease. The Watson's human caring philosophy supported the research process. In accordance with this author, van Manen's phenomenological methodology was chosen as the basis of the research process. Data was mainly collected from the experience of adult Quebeckers living with systemic sclerosis, through 34 in-depth interviews with 17 participants (14 women and three men). The results allowed the identification of four themes that describe, on the one hand, the essence of the experience of systemic sclerosis, and on the other hand, two themes emerged showing the essence of the experience of health-within-illness. The two essences were interrelated in order to develop a conceptualisation of the experience of health-within-illness in adult Quebeckers living with systemic sclerosis. This new conceptualisation of the experience of health- within-illness can contribute to a renewal of health care practice.

Transplante autólogo de células tronco hematopoéticas para esclerose sistêmica: ações de enfermagem / Autologous hematopoietic stem cell transplantation in systemic sclerosis: nursing actions / Transplante autólogo de células troncales hematopoyéticas para esclerosis sistémica: acciones de enfermería

Estudo transversal cujo objetivo foi identificar as intercorrências e as ações de enfermagem implementadas nos pacientes com esclerose sistêmica submetidos ao transplante autólogo de células tronco hematopoéticas, durante o regime de condicionamento. Foram avaliados 27 pacientes com idade média de 34 anos. Em relação ao tempo de diagnóstico, 48,1% foram submetidos ao transplante entre dois e três anos de descoberta da doença. Diante das principais manifestações apresentadas pelo paciente, destaca-se 96,2% com lesão de pele e mucosa e 81,4% com fenômeno de Raynaud. Quanto às intercorrências durante o regime de condicionamento, a retenção hídrica ocorreu em 100% dos pacientes, sendo implementadas as ações de enfermagem: administração de furosemida, controle hídrico rigoroso, exame físico, monitorização dos sinais vitais, peso e pressão venosa central. Os resultados permitem conhecer as necessidades de saúde dos pacientes com esclerose sistêmica durante o regime de condicionamento e proporciona subsídios para o planejamento da assistência de enfermagem.

The objective of this cross-sectional study was to identify the complications and the implemented nursing actions in systemic sclerosis patients undergoing autologous hematopoietic stem cell transplantation, during the conditioning regimen. Evaluations were performed with 27 patients, with a mean age of 34 years. Regarding the time of diagnosis, 48.1% underwent transplantation between two and three years after discovering the disease. Regarding the main signs in patients, 96.2% had skin and mucous membrane lesions and 81.4% had Raynaud's phenomenon. As to the complications during the conditioning regimen, water retention occurred in 100% of patients, and the following nursing actions were implemented: administration of furosemide, rigorous fluid intake control, physical examination, monitoring vital signs, weight and central venous pressure. The results allow for learning the health needs of patients with systemic sclerosis during the conditioning regimen and offer support for nursing care planning.

Estudio transversal objetivando identificar los cambios y acciones de enfermería implementados en pacientes con esclerosis sistémica sometidos a transplante autólogo de células troncales hematopoyéticas, durante el régimen de acondicionamiento. Fueron evaluados 27 pacientes con media etaria de 34 años. En relación al tiempo de diagnóstico, 48,1% fueron sometidos al transplante entre dos y tres años del diagnóstico de la enfermedad. Entre las principales manifestaciones presentadas por el paciente, se destacan las lesiones de piel y mucosas (96,2%), y 81,4% con fenómeno de Raynaud. Respecto a cambios durante el régimen de acondicionamiento, se manifestó retención hídrica en 100% de los pacientes, implementándose las acciones de enfermería: administración de furosemida, control hídrico riguroso, examen físico, monitoreo de signos vitales, peso y presión venosa central. Los resultados permiten conocer las necesidades de salud de pacientes con esclerosis sistémica durante el régimen de acondicionamiento, y brinda ayuda para planificación de la atención

Coping strategies for activities of daily living in women whose hands affected by systemic sclerosis.

AIMS AND OBJECTIVES: To determine the challenges experienced by women with systemic sclerosis, whose hands affected, while performing activities of daily living and their coping strategies. BACKGROUND: Many of the patients with systemic sclerosis experience difficulties in performing daily activities. One of the most important reasons for that is the impaired hand function due to their diseases. DESIGN: A descriptive cross-sectional design was conducted and questionnaire was used in this study. METHODS: The study was performed in a Rheumatology Department at a tertiary-care hospital in Turkey between April 2010-December 2011. Nineteen patients with systemic sclerosis with hand involvement were enrolled in this study. The data were collected by using both a demographic data form and an Evaluation of Daily Activity Questionnaire. RESULTS: According to Evaluation of Daily Activity Questionnaire, the most scored dimension that patients can do with much difficulty was 'eating' and the dimension that patients unable to do was 'washing/clothes care'. In 'eating' dimension, the most difficult activities were 'opening glass jar', 'opening juice bottle' and 'opening bottle' that requiring the movement of rotation. Their coping strategies for these activities were as follows: try to open with a towel, try to remove the edge of the palm with a knife, use the hand palm and help from someone else (spouse, neighbour, etc.). In 'washing/clothes care' dimension, the most difficult activities were 'turning up hem of a skirt', 'washing up in bowl' and 'cutting out material'. For these activities, they use some coping strategies such as getting help from tailor, washing in the machine instead of hand washing. CONCLUSION: This study demonstrates that impaired hand function affects the daily life activities of patients with systemic sclerosis, and patients have developed some coping strategies to overcome these difficulties. RELEVANCE TO CLINICAL PRACTICE: The coping strategies used by patients can be helpful for the other patients with systemic sclerosis.

The need for nursing instruction in patients receiving steroid pulse therapy for the treatment of autoimmune diseases and the effect of instruction on patient knowledge.

BACKGROUND: Many patients who receive steroid pulse therapy go home the same day or the day after steroid administration. Nursing instructions are important for improving patient knowledge related to their diseases and treatments, but the short hospital stay often prevents complete education and guidance regarding the given therapy. The purpose of this study was to investigate the need for nursing instruction in patients receiving steroid pulse therapy for the treatment of autoimmune diseases and the effect of instruction on patient knowledge of their disease and treatment. METHODS: Patients with systemic lupus erythematosus (SLE) and systemic sclerosis receiving steroid pulse therapy (N = 63) were recruited from a medical center in Taipei. A structured questionnaire was used for data collection before and after nursing instruction, and 1 week as well as 2 weeks after therapy. The need for nursing instruction and knowledge levels were validated using Cronbach's α reliability test. RESULTS: There was a significant difference (P < 0.001) in the need for nursing instruction among the 4 time points. There was a positive correlation between the need for nursing instruction and body weight change, frequency of treatment, and distress, but there was a negative correlation with knowledge level (ß = -0.012, P = 0.003) regarding symptoms. The knowledge level of subjects after nursing instruction was significantly higher than before nursing instruction (80 ± 14.31 vs. 70.06 ± 17.23, P < 0.001). CONCLUSIONS: This study indicates that nursing instruction is needed by patients receiving steroid pulse therapy, and that by designing and administering nursing instructions according to the priority of patient symptoms, nurses can improve patient knowledge related to their diseases and treatments. In addition, the need for nursing instruction can be affected by patient characteristics.

Measurement of upper limb ulcers in patients with systemic sclerosis: reproducibility and correlation with pain, function, and quality of life.

BACKGROUND: There are a large number of studies addressing the treatment and assessment of chronic ulcers. Despite the fact that ischemic ulcers are frequent and difficult to manage in cases of systemic sclerosis, there is minimal literature on assessment measures regarding these wounds or on their reproducibility. OBJECTIVES: The aim of this study was to investigate intraobserver and interobserver reproducibility regarding ulcer dimension measurements in patients with systemic sclerosis. Correlations between pain, upper limb function, pinch strength, and quality of life were also determined. METHODS: A prospective 11-week follow-up study was carried out to assess active upper limb ulcers. Ulcer diameter, ulcer area, and interobserver reproducibility were performed weekly. Quality of life (Medical Outcomes Study 36-Item Short-Form Health Survey), upper limb function (disabilities of the arm, shoulder, and hand), pinch strength, pain, visual analog scale, and intraobserver reproducibility were assessed at baseline, 3, 7, and 11 weeks. RESULTS: Fifty-one active ulcers were recorded. Larger ulcer diameter, smaller ulcer diameter, and ulcer area demonstrated excellent intraobserver (r > .81, p < .001) and interobserver reproducibility (r > .76, p < .001). There was significant correlation between ulcer dimension and visual analog scale scores for pain (r = .42; p < .001) and some Medical Outcomes Study 36-Item Short-Form Health Survey; pinch strength; and disabilities of the arm, shoulder, and hand domains (r >or= .40; p < .01). DISCUSSION: Simple measurement instruments for the assessment of ischemic ulcers were reproducible in patients with SSc and correlated to other variables of interest for these wounds.

Paciente con esclerodermia que inicia programa de hemodiálisis / Current profile of patient under hemodialysis. An analysis of their needs

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Progressive systemic sclerosis: Part 2--Nursing management.

Multiple body systems can be affected by scleroderma. Satisfactory coping and life-style alterations will depend on numerous factors, including the nature and extent of organ involvement, individual coping style, and health professional services provided. Because of the low incidence of this disease, nurses may have little knowledge about the nursing management. Because of the nature of the disease's complications, the nephrology or dialysis nurse may care for more scleroderma patients than other hospital nurses.