CHARGE syndrome is characterized by impaired vision and hearing, as well as physical malformations. The aim of this study is to describe the characteristics of the malformations and the health care consumption during the first year, in a Swedish sample having CHARGE syndrome. Three of the five individuals fulfilled all the traditional criteria for a clinical diagnosis of CHARGE syndrome. All infants were hospitalized from 26 to 230 days, subjected to 10-34 different diagnostic procedures and prescribed 10-28 different medications during their first year. Coordinated and individually adapted care is urged, as these infants and their families are in of need multiple health care contacts.
Anaesthesia often induces a state of unconsciousness that includes inability to communicate and influence the situation. The patient has to rely on the nurse anaesthetist to speak up for her/him as well as maintain her/his dignity and safety. Consequently, the nurse anaesthetist can be likened to the patient's advocate.
The aim of the study was to describe advocacy in anaesthesia care during the perioperative phase from the perspective of the registered nurse anaesthetist.
Data for this qualitative descriptive study were collected during March and April, 2011. Individual interviews were conducted with a purposive sample of 20 nurse anaesthetists from two hospitals in Sweden. The audio-taped interviews were transcribed verbatim and analysed by means of qualitative content analysis.
The main theme, Holding the patient's life in my hands, described the nurse anaesthetists' perception of advocacy and comprised three subthemes: providing dignified care, providing safe care and a moral commitment.
Acting as the patient's advocate includes important health and well-being issues and could be stressful for the nurse anaesthetists'. A work environment where the nurse anaesthetists' can make their voices heard and feel that their opinion regarding the patient's best interests is taken seriously would be desirable, as all health professionals should ideally focus on those in their care.
Department of Pediatric and Adolescent Medicine, Akershus University Hospital, Nordbyhagen, Norway; Institute for Clinical Medicine, Campus Ahus, University of Oslo, Nordbyhagen, Norway. Electronic address: firstname.lastname@example.org.
The aim of this study was to examine how parents of very low birth weight (VLBW) infants experienced having their newborn infant enrolled in a randomized controlled intervention trial (RCT).
A qualitative descriptive design was used. Data were collected through individual semi-structured interviews with 15 parents of 9 participating VLBW infants. The data were then made the object of an inductive qualitative content analysis.
The parents expressed trust in the competence and motivation of the researchers and were confident that participating in the project would do no harm, but instead would potentially benefit their infant. The parents felt privileged for being given the chance to participate, to commit to the project; they were willing to invest their time and effort in the project. Participation could be stressful for the parents, ranging from minor irritation to situations in which they felt overwhelmed and not entirely in control. Many families lived stressful lives, and participation, particularly the follow-up after being discharged, may have added to this.
Infant participation in an RCT can be a positive experience, making the parents feel that they are given a chance to both contribute and receive something special. Participation can also be stressful because of conditions both related and unrelated to the RCT.
We identified several issues that researchers in future trials with VLBW infants need to address to minimize parental stress. Recruitment to intervention studies within the immediate period around birth should be avoided, if possible.
Previously fears in adolescents with cancer has been identified in relation to medical procedures, death, altered appearance and as having an overall influence on life, but to our knowledge young people's perspectives on dealing with fear have not been previously investigated.
To examine adolescents' perspectives on dealing with cancer related fear.
Six girls participated in qualitative interviews focussing on their fear and and how they dealt with it. Data were analysed by means of qualitative content analysis.
The results revealed two perspectives. First, the adolescents' own personal battle with fear. Second, they reported that they were not alone with their fear, as they shared it with significant others. An environment characterized by emotional presence helped them to deal with their fear, as well as prevented it from occurring.
There is a need for staff and parents to be vigilant to the adolescents' need to feel cared for and allow them the opportunity to deal with their own fear, as at times they want to manage in their own way. Young patients have resources to cope with their fears and therefore should not be viewed as victims, but as young people with a great amount of competence, who benefit from a supportive environment.
To describe patients' experiences of magnetic resonance examination of the liver and their experiences of two breath-hold techniques.
Traditionally, patients are instructed by the radiographer to hold their breath during the examination. Alternatively, the patient can initiate the breath hold and start the image acquisition. Studies have revealed that magnetic resonance examinations can be experienced as challenging.
Semi-structured interviews were conducted with 28 patients and analysed using qualitative content analysis. The data collection was carried out from autumn 2010 to spring 2011.
The patients' main experience was that they felt loss of control. This was described in terms of feeling trapped, being lost in time and lost as a result of uncertainty. They had many questions in their mind that they did not ask. Although their statements often revealed no clear preference regarding the techniques, almost half of the patients seemed to prefer self-initiated breath hold, as it was easier and less stressful. Those who preferred the radiographer-directed technique felt more confident leaving the responsibility to the radiographer. In general, the patients understood the importance of achieving the best quality images possible.
Magnetic resonance examination can be experienced as being in loss of control. Nevertheless, not all patients wished to actively participate in magnetic resonance examination. Some preferred to hand over the responsibility to the radiographer. These results can form a base for radiographers' reflections of how to individualize and optimize the nursing care of patients undergoing magnetic resonance examinations.
Department of Pediatrics, Faculty of Medicine and Health, Örebro University, Sweden; School of Health Sciences, Faculty of Medicine and Health, Örebro University, Sweden. Electronic address: email@example.com.
A descriptive design was used where 20 fathers of premature infants were interviewed using a semi-structured interview-guide. The guide contained the following five topics: the fathers' feelings about and experiences of using skin-to-skin contact (SSC), the physical environment at the Neonatal Intensive Care unit, staff attitudes, and whether SSC had any impact on the relationship with their partner and other children in the family. The interviews were analyzed using directed qualitative content analysis and the results compared with those of a qualitative systematic review by Anderzén-Carlsson and colleagues.
The result shows that the fathers' overall experience of SSC was positive and as in the aforementioned review, they described experiences that were both gratifying and challenging. They felt more included and just as important as the mother because SSC and the demands placed on them by the premature birth helped them to achieve more equal parenthood.
The fathers' overall experiences of SSC were positive as they felt included in their infants' care and just as important as the mothers. To a great degree the theoretical model tested was supported, although some weaknesses and differences were identified.
It is important to include fathers in neonatal care and recognize that they feel equally important as mothers in caring for premature infants.
To describe experiences among patients with chronic obstructive pulmonary disease (COPD) of the lasting usefulness one year after participating in a multidisciplinary pulmonary rehabilitation (PR) programme in a primary health care (PHC) setting.
COPD affects patients' functioning in daily life. In a previous study, the patients participated in a programme for PR and were found to increase their functional capacity, quality of life and decrease exacerbations. The present study aims to provide a deeper understanding of the experience of participating in the programme.
The study has a descriptive, qualitative design and is part of a longitudinal study on a multidisciplinary programme for PR of patients with COPD.
Semi-structured interviews with 20 participants were performed and data analysed by qualitative content analysis.
The findings are presented in one theme that illustrates the participants' experience of their current situation; I live life at my own pace, and three sub-themes illustrating this experience related to the participation in the programme; Awareness of limitations in my life; Regained control over my life; and No change in my life.
Irrespective of whether the patients had already found their own strategies for managing the disease or whether the programme changed their lives, they lived their lives at their own pace. However, their lives were shadowed by worry.
A multidisciplinary programme for PR in PHC could be an alternative for patients suffering from COPD, in order to facilitate for them in their daily life. It is suggested that the inclusion of patients in such groups should be based on each individual's need based on symptoms or functional capacity in everyday life, not based on spirometry values.
Healthcare professionals' experience of being family member of a patient can contribute to knowledge development and organizational learning in further ways than the experiences of general family members. However, there is little research on healthcare professionals' experience being on 'the other side of the bed'.
To describe how healthcare professionals understand the role of being a healthcare professional and a family member of a patient admitted to hospital.
Qualitative with a phenomenographic approach.
Three Swedish hospitals.
All healthcare professionals in three hospitals were invited. Twenty-one volunteered for the study and 18 met the inclusion criteria; to have one year of professional experience and to have visited the family member in hospital daily during hospitalization. Family members in maternity or psychiatric care were excluded.
Semi-structured interviews were used for data collection. Transcripts were analyzed with a phenomenographic method to describe variation and commonality in the ways of understanding the phenomenon under study.
Four dominant ways of understanding the phenomenon were identified; the informed bystander, the supervisor, the advocate and the carer. The four ways of understanding were hierarchically related with "The informed bystander" being least involved in the care of the family member and "The carer" more or less taking over the patient's care because of inappropriate, unsafe or omitted care. Common for all ways of understanding the phenomenon, except "The informed bystander", was the difficult balance between their loyalty toward the family member and their colleagues among the staff. "The informed bystander" and "The supervisor" are ways of understanding the phenomenon under study that, to our knowledge, has not been described before.
This study describes how being a family member of a patient can be understood in four different ways when the family member is a healthcare professional. The findings show similarities to previous studies on general family members as well as nurse-family members of patients in critical care. The need for professional communication, support and coordination will be substantially different if the family member understands his/her role as an informed bystander compared to if they perceive themselves as a carer. The role conflict and ambivalence toward building relationships described are aspects that need further exploration, as does the experience of being forced to care for a family member. Our findings contribute with new knowledge developing patient- and family-centered care.
The aim of this study was to gain a deeper understanding of how parents of children with cancer handle the fear in their children. Fifteen parents of 11 children participated in focus-group interviews. Data were analyzed by a phenomenological hermeneutical method. The results suggest that the parents' handling was equivalent with caring in the best interests of the child. This included striving for the security and well-being of the child up to a certain point where the parents instead used their authority to maintain the child's physical health rather than trying to prevent or relieve the child's fear.
The purpose of this study is to describe the everyday life experiences of fathers of adult children who have various forms of long-term mental illness. Ten fathers were interviewed. Content analysis revealed one main theme: Maintaining a strong fa?ade while balancing on a thin line, and two sub-themes: (1) A constant struggle and (2) A feeling of powerlessness. The fathers demonstrated great engagement and good will to participate in their child's life. A sense of powerlessness and frustration at not having or being allowed freedom of action emerged. Cooperation between children, parents, the care service providers, and the authorities could increase the parents' abilities to provide adequate support to the child as well as helping them to understand and make the incomprehensible manageable.
Erratum In: Issues Ment Health Nurs. 2012 May;33(5):345Sk?ndal, Ersta [removed]