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- Nordlind, Anna, 1972-, et al.
(author)
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How paediatric departments in Sweden facilitate giving children a voice on their experiences of healthcare : A cross‐sectional study
- 2022
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In: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 25:1, s. 384-393
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Journal article (peer-reviewed)abstract
- BackgroundIn January 2020, the United Nations Convention on the Rights of the Child was incorporated into Swedish law. According to Swedish regulations, patients are to be given the opportunity to participate in quality improvement. Sometimes, the patients are children who have the right to be heard on matters concerning them, such as their experience of a hospital visit.ObjectiveThis study aimed to describe how Swedish paediatric departments facilitate children's voices on their healthcare experiences and how their perspectives are taken into account in quality improvement work.MethodsThis study has a descriptive cross-sectional design. Data were collected using a study-specific survey sent by e-mail to all the heads of the paediatric departments in Sweden, with both inpatient and outpatient care. The response rate was 74% (28 of 38 departments).ResultsThe results demonstrated a variation in questionnaires used and to whom they were targeted; less than half of the participating departments reported having had questionnaires aimed at children. The results also indicated a major variation in other working methods used to allow children to voice their experiences in Swedish paediatric departments. The results indicate that the national co-ordination in facilitating the children's rights to be heard on their experiences in healthcare organisations can be improved.ConclusionFurther research is required to ascertain which method is the most practically effective in paediatric departments, in what way children prefer to be heard regarding their experience of and perspectives on healthcare, and what questions need to be asked. A validated national patient-reported experience measure developed with and aimed at children could provide them with equal opportunities to voice their experiences in healthcare, regardless of their diagnoses or which paediatric department they visit.
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- Nordlind, Anna, 1972-, et al.
(author)
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Translation, cultural adaptation and validation of a patient-reported experience measure for children
- 2024
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In: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 27:1
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Journal article (peer-reviewed)abstract
- BACKGROUND: There is no national, validated, generic patient-reported experience measure (PREM) for children under 15 years of age in Sweden. A recent cross-sectional study found no consensus in how children's voices are heard in paediatric health care, as well as a lack of validated questionnaires.AIM: The aim of this study is to translate, adapt and validate the six versions of the Children's and Young People's PREM for use in a Swedish health care context.DESIGN: An exploratory sequential mixed-method design including cognitive interviews and content validity index (CVI) was used. The interviews focused on evaluating children's understanding of the questionnaire, and the CVI was used to further adjust the relevance of the questionnaire.PARTICIPANTS: A convenience sample of 62 children participated in the cognitive interviews and an additional convenience sample of 42 children was included in the CVI testing. The children, aged 8-16 years, were attending routine visits at paediatric departments in a county hospital and a children's hospital in the mid-Sweden region between October 2020 and June 2022.RESULTS: The translation, adaptation and validation process identified several issues regarding the understanding of the questionnaire in a Swedish context. Adaptations were made based on issues related to context, wording and the structure of the questions. CVI testing resulted in the removal of 3-10 questions in each of the different versions of the questionnaire.CONCLUSION: The study has resulted in six face- and content-validated Swedish versions of the questionnaire ready for pilot testing. Although the versions of the original questionnaire were developed in collaboration with children in the United Kingdom, this did not mean that they could automatically be used in a Swedish health care context. This study confirms the importance of a rigorous process of adaptation and validation to ensure quality and applicability to children accessing health care in different countries.PATIENT OR PUBLIC CONTRIBUTION: Children's views have guided the development of the original instrument and its adaptation to the Swedish health care context. Due to the strong patient involvement in the process of developing the Swedish versions of the questionnaire, the research group made a pragmatic decision to have no other patient contribution in the study.
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- Warnicke, Camilla, 1971-, et al.
(author)
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Interventions for adults with deafblindness : an integrative review
- 2022
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In: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 22:1
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Research review (peer-reviewed)abstract
- Purpose To compile the current research on interventions for rehabilitation aimed at adults (aged 18-65 years) with deafblindness.Materials and methods A comprehensive search was conducted in eight databases. An additional manual search was also carried out. A total of 7049 unique references were initially identified, and after screening, 28 original scientific articles were included. The results from these articles were categorized based on limiting consequences of deafblindness: communication, orientation and to move around freely and safely and access to information, as well as to psychological adaptation to deafblindness.Results Fourteen of the included articles had their main focus on access to communication, ten on orientation and the ability to move around feely and safely, three on the opportunity to gain access to information, and one related to psychological adaptation to deafblindness. Most articles focused on technical devices, of which one-third were single case studies.Conclusion There is a limited number of evaluated interventions for people with deafblindness. Most of the existing studies involved one to five participants with deafblindness, and only few studies involved a larger number of participants. More research with a larger number of participants are needed, which could be facilitated by international cooperation between practitioners and researchers.
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- Dahlberg, Karuna, 1979-, et al.
(author)
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Nurse competence and care in the postanesthesia care unit (PACU) : Nurse’s and patient’s perspectives
- 2023
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Conference paper (peer-reviewed)abstract
- Introduction: To create a safe PACU care, nurses need to have specific competence. There are few studies investigating PACU care from the nurse’s perspective and there is limited knowledge about patients’ experiences of early recovery and PACU care. Therefore, the aim was to describe PACU care and early recovery from the nurse’s and the patient’s perspectives.Method:Data was collected in two qualitative studies. Participants were recruited from two hospitals located in different parts of Sweden. Nurses were eligible if >1 year of experience from PACU care. Patients were eligible if the expected PACU stay was >2 hours. Semi structured individual interviews were carried out. In total 16 nurses and 14 patients were interviewed. Data were analysed using thematic analysis (1).Result: Nurse’s perspectives Nurses described PACU care competence as being adaptable in an ever-changing environment and creating safe care. That included being independent, working jointly in the team, and to prioritize and make clinical decisions. To create a safe care possessing specific knowledge, acknowledging and reassuring the patient, and to work proactively were important factors (2).Patient’s perspectives Patients described being in a transition between surgery and ward . That was captured in the subthemes Being in-between points of care, Being in PACU surroundings, Being individually acknowledged, Feeling trust in the caring provided, Feeling dehumanized and abandoned (3).
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- Drakenberg, Anna, 1986-, et al.
(author)
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On-line Think-aloud interviews : evaluating a new questionnaire measuring family involvement in care
- 2023
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In: Nordic Conference in Nursing Research, Reykjavik, 2-4 October 2023.
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Conference paper (peer-reviewed)abstract
- BackgroundFamily involvement in in-patient care enhances patient safety and quality of care by reducing complications and hospital length of stay. A valid measurement of family involvement in care is needed when implementing and evaluating family involvement-promoting activities. MethodsThe design of this study was inspired by the guidelines for best practices for developing and validating measurement scales. The steps used were: identifying domains and generating items, assessing content validity, and pre-testing items with the target population. An expert group rated item relevance and the content validity index was calculated. Nineteen online Think-aloud interviews were conducted with family members of former in-patient surgical patients.Results The domains of family involvement and item selection from two preexisting questionnaires were grounded in scholarly literature. Items were adapted for family members in the in-patient care setting. Item content validity varied between 0.71–1.00, scale content validity/averaging was 0.90. After adjustments, the items were pretested through on-line cognitive interviews with family members. Three main problem areas were found: defining family involvement, misinterpretation of different terms, and underuse of one response option. These problems were adjusted for. The Family Involvement in Care Questionnaire consists of 16 items with a four-point Likert scale and two open-ended items.ConclusionOn-line think aloud interviews are a feasible method when evaluating new questionnaires. Problems experienced by the target population were identified prior to a large quantitative psychometric evaluation of the questionnaire.
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- Drakenberg, Anna, 1986-, et al.
(author)
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Side-by-side joint display integration : an example from a mixed-methods study on interprofessional attitudes to family involvement in care
- 2023
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Conference paper (peer-reviewed)abstract
- BackgroundFamily involvement improves patient outcomes after surgery and is important for the family´s well-being. Attitudes to family involvement in care among health care professionals influence how families are treated and cared for. We therefore aimed to describe these attitudes, held by nurses and medical doctors, working in the open-heart surgical care context.MethodsA mixed-methods convergent parallel design was applied. A questionnaire with scaled and open-ended questions generated a qualitative (n=206) and a quantitative (n=267) dataset from nurses. In parallel with this data collection, qualitative interviews with medical doctors (n=20) generated a second qualitative dataset. Data were analyzed separately and thereafter merged into mixed-methods concepts using a side-by-side joint display. Meta-inferences of the concepts convergence and divergence were discussed and presented in a visual side-by-side joint display. ResultsSeven categories from the qualitative results were merged with the inference of statistical results into four mixed-methods concepts: Supporting, informing and improving care, Caring for the family, Impairing care and Depending on the situation. Out of these concepts, presenting interprofessional attitudes to family involvement in open-heart surgical care, two were convergent and two divergent. ConclusionThe side-by-side joint display was useful in both the integration and presentation of meta-inference. Even though attitudes, as described by nurses and medical doctors, are foremost positive, the importance of family involvement in open-heart surgical care depends on the situation.
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- Drakenberg, Anna, 1986-, et al.
(author)
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The Family Involvement in Care Questionnaire : An instrument measuring family involvement in in patient care
- 2023
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In: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 18:8
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Journal article (peer-reviewed)abstract
- BACKGROUND: Family involvement in care can be seen as a prerequisite for high-quality family-centered care. It has been identified to improve both patient safety and the quality of care by reducing patient complications and hospital length of stay.OBJECTIVE: To develop and evaluate the content validity of a questionnaire measuring family involvement in inpatient care.METHODS: The study followed a systematic approach in building a rigorous questionnaire: identification of domain, item generation, and assessment of content validity. The content validity index was calculated based on ratings of item relevance by an expert group consisting of seven senior nurses. Subsequently, 19 online cognitive interviews using the Think-aloud method were conducted with family members of former patients who had undergone open-heart surgery.RESULTS: Five aspects of family involvement were identified, and the initial pool of items were selected from two preexisting questionnaires. The experts' ratings resulted in item content validity of 0.71-1.00, and the scale content validity/averaging was 0.90, leading to rewording, exclusion, and addition of items. The pretesting of items through two rounds of cognitive interviews with family members resulted in the identification of three main problem areas: defining family involvement, misinterpretation of different terms, and underuse of the not relevant response option. The problems were adjusted in the final version of the questionnaire, which consists of 16 items with a four-point Likert scale and two open-ended items. CONCLUSIONS: The Family Involvement in Care Questionnaire has demonstrated potential in evaluating family involvement in inpatient care. Further psychometric properties regarding reliability and validity need to be established.
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- Drakenberg, Anna, 1986-, et al.
(author)
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The symphony of open-heart surgical care : A mixed-methods study about interprofessional attitudes towards family involvement
- 2023
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In: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 18:1
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Journal article (peer-reviewed)abstract
- Purpose: The overall aim of this study was to describe the attitudes towards family involvement in care held by nurses and medical doctors working in open-heart surgical care and the factors influencing these attitudes.Methods: Mixed-methods convergent parallel design. A web-based survey was completed by nurses (n = 267) using the Families’ Importance in Nursing Care-Nurses Attitudes (FINC-NA) instrument and two open-ended questions, generating one quantitative and one qualitative dataset. Qualitative interviews with medical doctors (n = 20) were conducted in parallel, generating another qualitative dataset. Data were analysed separately according to each paradigm and then merged into mixed-methods concepts. Meta-inferences of these concepts were discussed.Results: The nurses reported positive attitudes in general. The two qualitative datasets from nurses and medical doctors resulted in the identification of seven generic categories. The main mixed-methods finding was the attitude that the importance of family involvement in care depends on the situation.Conclusions: The dependence of family involvement on the situation may be due to the patient’s and family’s unique needs. If professionals’ attitudes rather than the family’s needs and preferences determine how the family is involved, care runs the risk of being unequal.
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