Marika Wenemark

Development and evaluation of the EOL-ICDQ as a measure of experiences, attitudes and knowledge in end-of-life in patients living with an implantable cardioverter defibrillator.

Background: Due to extended indications and resynchronization therapy, many implantable cardioverter defibrillator (ICD) recipients will experience progressive co-morbid conditions and will be more likely to die of causes other than cardiac death. It is therefore important to elucidate the ICD patients’ preferences when nearing end-of-life. Instead of avoiding the subject of end-of-life, a validated questionnaire may be helpful to explore patients’ experiences and attitudes about end-of-life concerns and to assess knowledge of the function of the ICD in end-of-life. Validated instruments assessing patients’ perspective concerning end-of-life issues are scarce. Aim: The purpose of this study was to develop and evaluate respondent satisfaction and measurement properties of the ‘Experiences, Attitudes and Knowledge of End-of-Life Issues in Implantable Cardioverter Defibrillator Patients’ Questionnaire’ (EOL-ICDQ). Methods: The instrument was tested for validity, respondent satisfaction, and for homogeneity and stability in the Swedish language. An English version of the EOL-ICDQ was validated, but has not yet been pilot tested. Results: The final instrument contained three domains, which were clustered into 39 items measuring: experiences (10 items), attitudes (18 items), and knowledge (11 items) of end-of-life concerns in ICD patients. In addition, the questionnaire also contained items on socio-demographic background (six items) and ICD-specific background (eight items). The validity and reliability properties were considered sufficient. Conclusions: The EOL-ICDQ has the potential to be used in clinical practice and future research. Further studies are needed using this instrument in an Anglo-Saxon context with a sample of English-speaking ICD recipients.

Respondent Satisfaction and Respondent Burden among Differently Motivated Participants in a Health-Related Survey:

Response rates in surveys have declined in many countries over the last decade. Reasons for refusal by nonrespondents have been discussed in many studies, but less attention has been paid to motivation among respondents who do take part. One theoretical framework for studying motivation is self-determination theory, which distinguishes between extrinsic and intrinsic motivation. This article describes respondents’ experiences of participating in a self-administered health-related survey. Qualitative content analysis was used to analyze data from semistructured telephone interviews with 30 Swedish respondents aged 45—64 years. The results show a broad spectrum of positive as well as negative aspects of survey participation.

To change or not to change - translating and culturally adapting the paediatric version of the Moral Distress Scale-Revised (MDS-R)

BackgroundPaediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised (MDS-R) is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction.MethodsThe procedure included linguistic translation and cultural adaptation of MDS-R’s paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care.ResultsTo achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens.ConclusionsTranslation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients.

Development of a self-care questionnaire for clinical assessment of self-care in patients with inflammatory bowel disease: A psychometric evaluation

BACKGROUND Patients with inflammatory bowel disease have lifelong needs to learn how to manage their symptoms and life situation. The range of actions that patients take in order to manage daily life and maintain health is referred to as self-care. Assessment of self-care in patients with inflammatory bowel disease could allow targeted support and education by health care professionals. There are no existing measures assessing self-care in patients with inflammatory bowel disease. OBJECTIVES The aim was to develop and evaluate the self-care questionnaire for assessment of self-care among patients with inflammatory bowel disease. METHODS Qualitative and quantitative methods were used to develop the inflammatory bowel disease self-care questionnaire. The development and evaluation process was performed in three phases: (1) item generation based on interviews with patients with inflammatory bowel disease (n = 20), (2) content validation in a panel of experts (n = 6) and patients (n = 100) assessed with the content validity index, cognitive interviews and quantifying and ranking the items to determine the usability of the questionnaire, and (3) final evaluation through a pilot study (n = 93) with test-retest evaluation (n = 50). An expert review group of three nurses and one physician continuously discussed the result during the development process. RESULTS A total of 91 patients with Crohns disease and 102 with ulcerative colitis participated. The final self-care questionnaire consists of 22 items. Assessment of content validity indicated that the items were adequate and easy to understand. Test-retest reliability was confirmed with intraclass correlations above 0.6 after a three week interval, for all items except one. CONCLUSION An inflammatory bowel disease-specific self-care questionnaire was developed using structured methods. The evaluation indicated good validity and reliability. The questionnaire may be a useful tool to assess the ability of patients with inflammatory bowel disease to perform routine self-care.

Development and evaluation of the Communication over Language Barriers questionnaire (CoLB-q) in paediatric healthcare

OBJECTIVE To develop a valid and reliable questionnaire addressing the experiences of healthcare personnel of communicating over language barriers and using interpreters in paediatric healthcare. METHODS A multiple- methods approach to develop and evaluate the questionnaire, including focus groups, cognitive interviews, a pilot test and test-retest. The methods were chosen in accordance with questionnaire development methodology to ensure validity and reliability. RESULTS The development procedure showed that the issues identified were highly relevant to paediatric healthcare personnel and resulted in a valid and reliable Communication over Language Barriers questionnaire (CoLB-q) with 27 questions. CONCLUSION The CoLB-q is perceived as relevant, important and easy to respond to by respondents and has satisfactory validity and reliability. PRACTICE IMPLICATIONS The CoLB-q can be used to map how healthcare personnel overcome language barriers through communication tools and to identify problems encountered in paediatric healthcare. Furthermore, the transparently described process could be used as a guide for developing similar questionnaires.

Translating and culturally adapting the shortened version of the Hospital Ethical Climate Survey (HECS-S) – retaining or modifying validated instruments

BackgroundThe Hospital Ethical Climate Survey (HECS) was developed in the USA and later shortened (HECS-S). HECS has previously been translated into Swedish and the aim of this study was to describe a process of translating and culturally adapting HECS-S and to develop a Swedish multi-professional version, relevant for paediatrics. Another aim was to describe decisions about retaining versus modifying the questionnaire in order to keep the Swedish version as close as possible to the original while achieving a good functional level and trustworthiness.MethodsIn HECS-S, the respondents are asked to indicate the veracity of statements. In HECS and HECS-S the labels of the scale range from ‘almost never true’ to ‘almost always true’; while the Swedish HECS labels range from ‘never’ to ‘always’. The procedure of translating and culturally adapting the Swedish version followed the scientific structure of guidelines. Three focus group interviews and three cognitive interviews were conducted with healthcare professionals. Furthermore, descriptive data were used from a previous study with healthcare professionals (n = 89), employing a modified Swedish HECS. Decisions on retaining or modifying items were made in a review group.ResultsThe Swedish HECS-S consists of 21 items including all 14 items from HECS-S and items added to develop a multi-professional version, relevant for paediatrics. The descriptive data showed that few respondents selected ‘never’ and ‘always’. To obtain a more even distribution of responses and keep Swedish HECS-S close to HECS-S, the original labels were retained. Linguistic adjustments were made to retain the intended meaning of the original items. The word ‘respect’ was used in HECS-S with two different meanings and was replaced in one of these because participants were concerned that respecting patients’ wishes implied always complying with them.ConclusionsThe process of developing a Swedish HECS-S included decisions on whether to retain or modify. Only minor adjustments were needed to achieve a good functional level and trustworthiness although some items needed to be added. Adjustments made could be used to also improve the English HECS-S. The results shed further light on the need to continuously evaluate even validated instruments and adapt them before use.