Translation, cultural adaptation and validation of a patient-reported experience measure for children.

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.

The Family Involvement in Care Questionnaire-An instrument measuring family involvement in inpatient care.

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.

The symphony of open-heart surgical care: A mixed-methods study about interprofessional attitudes towards family involvement.

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.

Interventions for children with deafblindness-An integrative review.

BACKGROUND: Deafblindness is a rare condition, and its prevalence has been reported to be approximately 1 in 27 000 new-borns worldwide. For individuals with deafblindness, lifelong interventions and support are needed to be able to develop communication, be active and preserve a good quality of life. Because little is known about what kind of support and interventions can be offered to children with deafblindness, the aim was to summarize and disseminate research findings regarding this topic. METHODS: Integrative review principles were employed. Systematic searches in eight databases and additional manual searches were conducted. The inclusion criteria were as follows: original studies published between 2000 and 2021 examining either interventions for children between 0 and 18 years of age with deafblindness or interventions aimed at children with deafblindness but offered to their relatives or professionals working with them. Studies on support for family members were also sought. Study characteristics were described, and key findings were synthesized into categories based on their similarities. RESULTS: Of the 6268 identified original studies, 32 were included. The key outcomes from the included studies were synthesized into three categories, with two categories illustrating the goal/intention of the intervention (social interaction and communication, motivation and participation) and one focusing on or identifying the action taken to benefit the child (adaptation of the educational environment). Social interaction and communication was the dominant category, covering 24 of the 32 included studies. CONCLUSIONS: This review concludes that there are a limited number of evaluated interventions for children with deafblindness. In many cases, the interventions were adapted to the individual child's needs, and most of them were found within the area of social interaction and communication. More research is needed to strengthen the level of evidence for interventions for children with deafblindness.

Interventions for adults with deafblindness - an integrative review.

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.

Living an ordinary life - yet not: the everyday life of children and adolescents living with a parent with deafblindness.

INTRODUCTION: The family life of people living with one family member with deafblindness has been sparsely described. PURPOSE: The aim of the study was to explore how children experience their everyday family life when having a parent with deafblindness. METHODS: An explorative study in which data have been collected by qualitative interviews of children. Qualitative content analysis has been used for analysing the data. RESULTS: Overall theme; Living an ordinary life-yet not, is based on four categories with subcategories. A family like any other describes: Having the same family life as their friends, Acting like other children and It is what it is. Different everyday life describes: Acknowledging differences, Adjusting to the parent's needs and Financial strain. Being there for the parent describes: Helping the parent and Protecting the parent from harm. Being emotionally affected describes: Feelings of frustration, Feelings of compassion and Need for support. CONCLUSION: Children as relatives of parents with deafblindness have been given a voice. The children live an ordinary life, but at the same time a different ordinary life. Professionals need to take the child and their needs into account when support is given.

Health-related quality of life after Nuss procedure for pectus excavatum: a cross-sectional study.

OBJECTIVES: Pectus excavatum (PE) can cause both physical and psychosocial symptoms and affect patients' health-related quality of life. Previous international studies have shown that the Nuss procedure increases both self-esteem and body image. The aim of the study was to evaluate the health-related quality of life in patients who have undergone the Nuss procedure for PE. METHODS: The study had a cross-sectional multicentre design. All patients (N = 420) who underwent the Nuss procedure for PE in 3 cardiothoracic departments in Sweden from 2000 to 2019 were invited to answer the RAND-36 and Nuss Questionnaire modified for adults. Genders were compared using the Mann-Whitney U-test. Patients were divided into groups based on age at time of surgery (<20, 20-30 or >30 years) and analysed by the Kruskal-Wallis H-test with post-hoc analyses. RESULTS: A total of 236 patients returned the questionnaires; 82.2% were males. Men scored significantly better on the modified Nuss Questionnaire total (P = 0.01) and psychosocial (P = 0.02) subscales. Patients who had surgery at <20 years of age had significantly better scores on the same scales (P = 0.007 and 0.006, respectively) compared to patients aged 20-30 years at the time of surgery. However, no significant difference was seen in comparison with patients >30 years. Patients who had their bar removed had significantly better values on both scales. CONCLUSIONS: Male gender, young age at surgery and bar removal seem to be associated with better health-related quality of life after the Nuss procedure for PE.

Nurse competence in the post-anaesthesia care unit in Sweden: a qualitative study of the nurse's perspective.

BACKGROUND: To enable safe and successful recovery for surgery patients, nurses working in post-anaesthesia care units need competence in postoperative care. No consensus defines what this specific competence includes, and it has not been studied from the perspective of nurses working in post-anaesthesia care units. The aim of this study is twofold: 1) To explore and describe nurses' perception of the competence needed to work in post-anaesthesia care units. 2) To explore and describe nurses' perception of what characterizes an expert nurse in post-anaesthesia care units. METHODS: This qualitative inductive study uses individual interviews. Sixteen nurses were recruited from two post-anaesthesia care units located in different parts of Sweden. Inclusion criteria were nurses employed in the post-anaesthesia care units for ≥1 years. Semi-structured individual interviews were conducted; data were analysed using thematic analysis. RESULTS: The interview analysis identified six subthemes and three themes. The themes being adaptable in an ever-changing environment and creating safe care represent the overarching meaning of competence required when working as a nurse in a Swedish post-anaesthesia care unit. Nurses must possess various technical and nontechnical skills, which are core competences that are described in the sub-themes. The theme seeing the bigger picture describes the nurse's perception of an expert nurse in the post-anaesthesia care unit. CONCLUSIONS: Nurse competence in post-anaesthesia care units entails specific knowledge, acknowledging the patient, and working proactively at a fast pace with the patient and team to provide safe, high-quality care. An expert nurse in post-anaesthesia care units can see the bigger picture, helping share knowledge and develop post-anaesthesia care. The expert competence to see a bigger picture can be used in supervising novices and creating a knowledge base for postgraduate education in order to promote safe, high-quality post-anaesthesia care.

Important interventions in the operating room to prevent bacterial contamination and surgical site infections.

BACKGROUND: The aim of this study was to explore interventions that Swedish operating room (OR) nurses considered important for the prevention of bacterial contamination and surgical site infections (SSIs). METHODS: A web-based cross-sectional survey with an open-ended question was answered by OR nurses and analyzed using summative content analysis and descriptive statistics. RESULTS: The OR nurses (n = 890) worked within 11 surgical specialties and most of them worked at university hospitals (37%) or county hospitals (53%). The nurses described twelve important interventions to prevent bacterial contamination and SSI: skin disinfection (25.9%), the OR environment (18.2%), aseptic technique (16.4%), OR clothes (13.4%), draping (9.8%), preparation (6.1%), dressing (3.6%), basic hygiene (3.4%), normothermia (2.1%), communication (0.7%), knowledge (0.3%), and work strategies (0.2%). DISCUSSION: Skin disinfection was considered the most important intervention in order to prevent bacterial contamination and SSI. The responses indicated that many OR nurses believed the patients' skin to be sterile after the skin disinfection process. This is not a certainty, but skin disinfection does significantly decrease the amount of bacterial growth. CONCLUSIONS: This study shows that many OR nurses' interventions are in line with recommendations. Although, knowledge regarding the effect of skin disinfection needs further research, and continued education.

How paediatric departments in Sweden facilitate giving children a voice on their experiences of healthcare: A cross-sectional study.

BACKGROUND: In 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. OBJECTIVE: This 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. METHODS: This 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). RESULTS: The 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. CONCLUSION: Further 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.

Translation and psychometric evaluation of the Swedish versions of the Nuss Questionnaire modified for Adults and the Single Step Questionnaire.

BACKGROUND: Pectus excavatum (PE) is the most common congenital chest wall deformity. Most individuals with PE suffer from psychosocial problems, with low self-esteem and poor body image. Correctional surgery for PE is available, the most widely used is the Nuss procedure. The Nuss procedure has previously been reported to improve self-esteem, body image and health-related quality of life (HRQoL). To assess HRQoL among individuals with PE, the Nuss Questionnaire modified for Adults (NQ-mA) and Single Step Questionnaire (SSQ) has been developed. The aim of the current study was to translate and culturally adapt NQ-mA and SSQ to fit a Swedish context, and to evaluate the psychometric properties, and validate the culturally adapted versions. METHODS: Individuals who had undergone the Nuss procedure for pectus excavatum were invited to participate in a multicentre study with cross-sectional design. HRQoL was assessed by NQ-mA, SSQ and RAND-36. Psychometric properties for NQ-mA and SSQ were evaluated by content validity index and construct validity (exploratory factor analysis, confirmatory factor analysis, and inter-scale correlations). Known-groups validity, as well as floor and ceiling effects, were evaluated. Internal consistency reliability was examined using Cronbach's alpha. RESULTS: In total 236 individuals participated in the study. Content validity index for NQ-mA showed satisfactory results, except for two items. Factor analysis for NQ-mA suggested a two-factor model, with exclusion of two items. Subscales correlated adequately with RAND-36's domains. Known-groups validity for NQ-mA demonstrated high sensitivity for between-group differences. Ceiling effects were present in several items. Cronbach's alpha for NQ-mA was .89. Confirmatory factor analysis for SSQ resulted in a three-factor model, with exclusion of five items. However, this model was shown to be unstable through further exploratory factor analysis testing, and no further psychometric tests were conducted for SSQ. CONCLUSION: The 10-item Swedish version of NQ-mA was shown to be valid for research and clinical assessment of HRQoL in individuals with pectus excavatum. The Swedish version of SSQ requires revision of items before further validation can be performed.

Patient experience of preheated and room temperature skin disinfection prior to cardiac device implantation: A randomised controlled trial.

BACKGROUND: Clinically, patients often comment on the coolness of the skin disinfectant. However, scarce evidence is available regarding patients' experience during intraoperative skin disinfection. AIMS: The aim of this study was to describe and compare intraoperative patient experiences with preheated and room temperature skin disinfectant. METHOD: This randomised controlled trial included 220 patients undergoing cardiac device implantation. Patients allocated to preheated (36°C) or room temperature (20°C) chlorhexidine in 70% ethanol verbally answered an open-ended question regarding their experience with the skin disinfection. Results were assessed using a qualitative approach with comparative quantification. RESULTS: The analysis resulted in nine categories describing the patients' experiences with preheated and room temperature skin disinfection. Most of the patients described the skin disinfection process as a negative experience, which consisted of six categories: cold, smell, change in temperature, unpleasant, wet and painful. In addition, two neutral categories of response (nothing in particular and neither pleasant nor unpleasant) and one positive response (pleasant) emerged through the analysis. Preheated skin disinfection yielded significantly fewer negative experiences in the category cold (85% vs. 15%, P<0.0001) and significantly more positive experiences (66% vs. 34%, P<0.002). Neutral categories (neither pleasant nor unpleasant 65% vs. 35%, P=0.01, nothing in particular 74% vs. 26%, P<0.001) dominated after preheated skin disinfection. CONCLUSION: The use of preheated skin disinfection promotes a positive patient experience with skin disinfection. TRIAL REGISTRATION: ClinicalTrials.gov registration number NCT02260479 (https://clinicaltrials.gov/ct2/results?cond=preheated+skin+disinfection).

Protective Nursing Advocacy: Translation and Psychometric Evaluation of an Instrument and a Descriptive Study of Swedish Registered Nurse Anesthetists' Beliefs and Actions.

PURPOSE: To translate and adapt the Protective Nursing Advocacy Scale (PNAS) into a Swedish version (PNAS-Swe), evaluate its psychometric properties, and describe registered nurse anesthetists' (RNAs) advocacy beliefs and actions from a protective perspective. DESIGN: A cross-sectional design was used. METHODS: First, the PNAS was translated into Swedish. Next, the content and construct validity of the PNAS four subscales was evaluated. Finally, the PNAS-Swe was used to describe Swedish RNA beliefs and actions regarding protective nursing advocacy. FINDINGS: The final PNAS-Swe has 29 items in four subscales. The RNAs reported that they feel that they should provide protective nursing advocacy for their patients. There were no differences in gender, or associations with age, or work experience regarding their advocacy beliefs or actions. CONCLUSIONS: The PNAS-Swe is valid for use in a Swedish context. Protective nursing advocacy is important to the RNAs, which is in congruence with earlier qualitative studies.

Promoting person-centred care in the perioperative setting through patient advocacy: An observational study.

AIMS AND OBJECTIVES: To examine the extent to which the findings from an integrative review regarding perioperative patient advocacy could be empirically supported, and to describe Swedish registered nurse anaesthetists' patient advocacy actions and interactions during the perioperative period. BACKGROUND: Patient advocacy is practiced by various healthcare professionals in promoting the well-being of patients. It is complex, and in a general healthcare context, it has been described as supporting the patients both physiologically and psychologically. During general anaesthesia, the patient enters an unconscious state, and the registered nurse anaesthetist safeguards patient privacy and autonomy. DESIGN: Qualitative descriptive. METHODS: Individual, nonparticipant observations (n = 16) with eight registered nurse anaesthetists. The observer followed the nurses unobtrusively by shadowing them during the perioperative phase on two separate occasions. The analysis was conducted with a directed content analysis in the light of four predetermined categories, identified in a previous integrative review of patient advocacy in the perioperative setting: protecting, value preserving, supporting and informing. RESULTS: The predetermined categories were empirically supported. They were further refined by identifying 11 new subcategories leading to a conceptual extension of the theoretical frame. The registered nurse anaesthetists interacted with the patient and all members of the surgical team when practicing perioperative patient advocacy and the actions were mostly initiated by the registered nurse anaesthetists themselves. CONCLUSIONS: The findings offer a new insight into the registered nurse anaesthetist's professional role. The observations deepen the understanding of the registered nurse anaesthetists' perioperative patient advocacy actions and can contribute to a more reflective and theory-oriented view of practice. RELEVANCE TO CLINICAL PRACTICE: The results from this study could be used to help registered nurse anaesthetists and their students understand practice in a more complete and insightful way.

Perioperative Patient Advocacy: An Integrative Review.

PURPOSE: The purpose of this review was to identify the characteristics and consequences of perioperative patient advocacy. DESIGN: An integrative review method was employed. METHODS: A database search to identify peer-reviewed articles that focused on perioperative patient advocacy was conducted in PubMed and CINAHL, followed by a manual search for additional articles. Studies were selected if they reported original empirical research findings with regard to perioperative patient advocacy. The data abstraction and synthesis were achieved with an inductive qualitative content analysis. FINDING: The analysis resulted in seven categories, two subthemes, and one main theme. The main theme, "Doing good for another human being-a balancing act between philanthropy and personal gratification," was the core of perioperative patient advocacy. CONCLUSION: Perioperative patient advocacy is part of the professional role of the perioperative nurse, and it affects the perioperative nurse emotionally. This advocacy shares similarities with descriptions of patient advocacy in general nursing.

Holding the patient's life in my hands: Swedish registered nurse anaesthetists' perspective of advocacy.

BACKGROUND: 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. AIM: The aim of the study was to describe advocacy in anaesthesia care during the perioperative phase from the perspective of the registered nurse anaesthetist. METHOD: 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. FINDINGS: 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. CONCLUSION: 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.