In their own words: early childhood asthma and parents’ experiences of the diagnostic process

Scand J Caring Sci; 2010; 24; 299–306
In their own words: early childhood asthma and parents’ experiences of the diagnostic process This paper explores the experiences of parents of asthmatic children in the period leading up to their child receiving a formal medical diagnosis. To what extent did the parents face difficulties in obtaining this diagnosis? How did they describe their encounters with the healthcare professionals? In particular, did parents portray themselves as passive and dominated or active and participating during the prediagnosis phase? In‐depth interviews with individuals and participants in a focus group exposed the prediagnosis phase as a distinct and memorable phase of the disease, often recalled as a period of frustration and uncertainty. Results show that instead of accepting the authority of the professional, parents eventually acquire knowledge elsewhere about the diagnosis and the healthcare system, and act according to that knowledge. As a fundamental uncertainty appears involved in the diagnostic process, parents dealing with this uncertainty use a number of strategies to gain control of the process of alleviating their child’s disease. The paper discusses the status of the information that the researcher obtained from parents. Lay narratives cannot be treated as simple reports of an external reality. As the parental role is rooted in normative conceptions about what constitutes ‘responsible parenthood’, information given to the observer may therefore be influenced by the informants’ concern with their appearance as moral persons or adequate parents. Although a research strategy based on one‐sided interviews has limitations, using parents as a source of information offers a rare glimpse into the realities of patient‐physician encounters.     

An overview of electronic personal health records

Electronic Personal Health Record systems are providing health consumers with greater access and control to their health records by shifting these records from being a health provider-centred Electronic Health Record, to a patient-centred, Electronic Personal Health Record (ePHR). Based on the delivery system, ePHR systems are classified into standalone, tethered, and integrated or unified ePHRs. While national approaches of implementing integrated ePHR vary, the middle out method has been recognised as the ideal approach. It is worth considering the adoption of ePHRs has been slow due to several factors, including technical, individual, environmental, social, and legal factors. This paper provides a representative overview of an ePHR system, outlining its definition, types, architectures, and nationwide approaches of its implementation. Additionally, the drivers and hindrances to health consumer adoption are discussed.     

How individuals with phenylketonuria experience their illness: an age‐related qualitative study

Background The aim of the study was to explore the illness experience of individuals affected by phenylketonuria (PKU) and its differences in different patient age groups. Methods A qualitative–interpretative methodology was used through in‐depth interviews. Textual data were explored using the principles of grounded theory. Results Forty‐seven patients participated in the study, aged from 10 to >25 years old. The results suggested the age‐related PKU experience: (1) a paradox, either to feel normal but isolated from the social context, or to be different while participating in the convivial aspects of the social being; and (2) the need for education about the disease tailored to the individual and growing needs. Specific themes seem to characterize each age range. Conclusions This study constitutes a first attempt at understanding PKU from a non‐medical‐biological perspective.     

Acute – an ambiguous concept in healthcare

The aim of this study was to explore the concept acute semantically. The concept is being used both in clinical and theoretical contexts, without questioning whether a clear meaning of the concept has been established. The analysis has been applied according to the semantic analysis strategy of the philosopher (and pedagogue) Koort (1975). First, the results show that the concept of acute has had an unclear meaning and perception in the Norwegian language. Second, the synonyms indicate two different contents. The experiences and events that occur acute might be experienced as 'sharp' and 'intense'. The synonyms point also at time, such as quick, rapid and swift. Third, it reveals that the shortlived experience as synonym does have a very little binding to the concept acute. The occurence that began suddenly is not meant to subside the same way as it began.     

Clinical Outcomes and Survivorship of Lateral Unicompartmental Knee Arthroplasty: Does Surgical Approach Matter?

Background

Lateral unicompartmental knee arthroplasty (UKA) has been shown to be an effective procedure to treat isolated lateral compartment osteoarthritis with excellent long-term survivorship. Whether a medial parapatellar approach or a lateral parapatellar approach is superior in lateral UKA is unknown. The purpose of this study was to determine if there is a difference in intermediate-term clinical outcomes in patients undergoing lateral UKA through a lateral vs medial parapatellar approach.

Globalization and the cultural safety of an immigrant Muslim community

AIM: This paper reports a study the aim of which was to further understanding of cultural safety by focusing on the social health of a small immigrant community of Muslims in a relatively homogeneous region of Canada following the terror attacks on 11 September 2001 (9/11). BACKGROUND: The aftermath of 9/11 negatively affected Muslims living in many centers of Western Europe and North America. Little is known about the social health of Muslims in smaller areas with little cultural diversity. Developed by Maori nurses, the cultural safety concept captures the negative health effects of inequities experienced by the indigenous people of New Zealand. Nurses in Canada have used the concept to understand the health of Aboriginal peoples. It has also been used to investigate the nursing care of immigrants in a Canadian metropolitan centre. Findings indicated, however, that the dichotomy between culturally safe and unsafe groups was blurred. METHOD: The methodology was qualitative, based on the constructivist paradigm. A purposive sample of 26 Muslims of Middle Eastern, Indian or Pakistani origin and residing in the province of New Brunswick, Canada were interviewed in 2002-2003. Findings. Participants experienced a sudden transition from cultural safety to cultural risk following 9/11. Their experience of cultural safety included a sense of social integration in the community and invisibility as a minority. Cultural risk stemmed from being in the spotlight of an international media and becoming a visible minority. CONCLUSION: Cultural risk is not necessarily rooted in historical events and may be generated by outside forces rather than by longstanding inequities in relationships between groups within the community. Nurses need to think about the cultural safety of their practices when caring for members of socially disadvantaged cultural minority groups as this may affect the health services delivered to them.     

Discourses in stroke rehabilitation as they present themselves in current physiotherapy and occupational therapy

Aim This study aims to discuss current perceptions of rehabilitation and how present rehabilitation practice is affected by dominating discourses in Danish society by exploring discourses expressed in official publications and the constructed journal notes of occupational and physiotherapists’ practice of stroke rehabilitation. Method The frame of reference is Fairclough’s critical discourse analysis. The analysis comprises seven official documents relevant to stroke rehabilitation provided in Danish health services in 2012–2013. Also, notes written by occupational therapists and physiotherapists in medical records of 10 patients with a stroke diagnosis admitted to hospital in 2012. The documents included were read thoroughly. The texts were analyzed deductively, focusing on discursive practice on articulated understandings of rehabilitation, health practice approaches, and social practice. Results The dominating discourses seem to be Western neoliberalism organizational, medical and ethical discourses. The macro level of discourses consisted of political documents addressing rehabilitation nationally. The meso level mainly concerned medical discourses within stroke rehabilitation whereas the micro level represented local medical and ethical discourses. Conclusion The neoliberal discourse supports the medical discourse with strong emphasis on evidence-based interventions. In contrast to ethical discourses, documentation of rehabilitation practice marked more attention being paid to facilitating the patient’s independence than to enabling the regaining of meaningful activities and participation.

• Implications for Rehabilitation

• Individualized rehabilitation must be organized with flexibility as it is a complex process

• Critical reflectiveness among health professionals is needed to provide individualized rehabilitation of high quality

• A broader range of stake holders, including patient organizations, are in demand within health policy making

• The discourses that construct rehabilitation policy and practices are sometimes in conflict, which may impact on, and impede, the rehabilitation for the individual patient