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.

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.

A lifelong struggle for a lighter tomorrow: A qualitative study on experiences of obesity in primary healthcare patients.

AIM: To describe experiences of living with obesity before the start of a group-based lifestyle intervention. BACKGROUND: Obesity is a chronic disease that affects a person's physical and psychological health. Increased knowledge of experiences of living with obesity is required. DESIGN: A qualitative study with a descriptive design. METHODS: Semi-structured individual interviews with 17 participants living with obesity (Body Mass Index 32-49) were conducted between October and November 2019. The interviews were analysed using qualitative content analysis. The COREQ checklist was followed. RESULTS: The analysis resulted in one main theme: Struggling for a lighter tomorrow and three subthemes: Suffering, Resilience and Need for support in making changes. For the majority of the participants, living with obesity was a lifelong struggle involving suffering on different levels. Yet despite this, the participants had not given up and hoped for a better life. They showed a degree of resilience and motivation, and a perceived ability to achieve lifestyle changes. However, there was a pronounced need for support to help them achieve this. CONCLUSION: Living with obesity is complex and carries a risk of medical complications as well as psychosocial suffering. Healthy lifestyle habits to achieve better health and to lose weight should be encouraged, taking patient resources into account. Patients also need help in handling weight stigmatisation, and both healthcare professionals and society must engage with this. RELEVANCE TO CLINICAL PRACTICE: Obesity is a chronic disease, and patients need ongoing support. Therefore, care for patients with obesity in primary health care must be further developed. Patient resources and strengths have to be acknowledged and encouraged in the process of helping them adopt healthy lifestyle habits. The findings of this study can contribute to ending weight stigmatisation by increasing the knowledge of living with obesity.

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.

Public health nurses' experiences working with children who are next of kin: a qualitative study.

BACKGROUND: There are a substantial number of children who are the next of kin of parents suffering from illness or substance abuse. These children can experience emotional and behavioral problems and may need support from professionals. In Norway, the specialist health service in hospitals is required to have a designated practitioner in each department to ensure support for and follow up of children who are next of kin; however, this is not regulated by law in the health care in the municipalities. The aim of this study was to explore public health nurse's experiences working with children who are next of kin. METHODS: Qualitative interviews were conducted with 10 public health nurses working in the child health clinic and the school health service in four municipalities. Data were analysed using content analysis. Reporting of this study is conducted in accordance to COREQ's checklist. RESULTS: The analysis resulted in one main theme: 'Lack of guidelines and routines among public health nurses working with children who are next of kin'. The main theme consisted of four categories: (1) identifying children who are next of kin are incidental; (2) public health nurses must be observant and willing to act; (3) communication is an important tool; and (4) follow up over time is not always provided. CONCLUSION: The public health nurses experienced uncertainty concerning how to identify and follow up children who are next of kin but were vigilant and willing to act in the children's best interest. Doing so necessitated collaboration with other professionals. The need for guidelines around the role and responsibilities for the public health nurse were emphasized. The knowledge provided by the current study offers valuable insight into strengths and limitations in the support of children who are next of kin and can inform stakeholders in organizing sustainable support for this group.

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.

Community-based support for children who are next-of-kin for a parent experiencing illness or disability - a scoping review.

INTRODUCTION: Children who are next-of-kin, for a parent who experience illness or disability, need support. In Norway, guidelines, routines and structured approaches in the community health services are lacking regarding involving children in the care of a parent and for services when supporting children as next-of-kin. Additionally, no existing international review has focused on support from community health and social services for children who are next-of-kin to a parent regardless of the specific illness or disability. AIMS: This scoping review examined the current knowledge regarding the types of community health and social services support to children 0 to 17 years old living with a parent experiencing illness or disability. The review also identified children's support preferences and needs. METHODS: The scoping review involved five stages; identifying research question; identifying relevant articles; selecting articles; charting the data and finally, collating, summarizing and reporting the results. RESULTS: Articles which included community health and social services interventions and children's preferences or needs for support were included. The foci of interventions included preventive education, peer support, psychosocial support, and interventions focusing on family communication and recovery planning. Articles focusing on children's preferences or need for support described their wish to be recognized as a next-of-kin, having someone to talk to and professional and peer support. CONCLUSION: The review highlighted the importance of children receiving support according to their preferences. It is important to elicit children's voices, to ensure community health and social services are developed for and tailored to this population.

Congenital chloride diarrhea and Pendred syndrome: case report of siblings with two rare recessive disorders of SLC26 family genes.

BACKGROUND: Congenital chloride diarrhea (CLD; OMIM 214700) is a rare autosomal recessive disorder caused by pathogenic variations in the solute carrier family 26 member A3 (SLC26A3) gene. Without salt substitution, this chronic diarrheal disorder causes severe dehydration and electrolyte disturbances. Homozygous variants in the nearby gene SLC26A4 disrupt anion exchange in the inner ear and the thyroid, causing Pendred syndrome (PDS; OMIM 274600), which is the most frequent form of syndromic deafness. CASE PRESENTATION: We report an unusual co-occurrence of two rare homozygous mutations in both the SLC26A3 and SLC26A4 genes, causing a rare combination of both CLD and PDS in two siblings. Although the clinical pictures were typical, the combined loss of these anion transporters might modulate the risk of renal injury associated with CLD. CONCLUSIONS: Familial presentation of two rare autosomal recessive disorders with loss of function of different SLC26 anion transporters is described. Independent homozygous variants in the SLC26A3 and SLC26A4 genes cause CLD and PDS in siblings, shedding light on co-occurrence of rare recessive traits in the progeny of consanguineous couples.

Prevalence, diagnoses and rehabilitation services related to severe dual sensory loss (DSL) in older persons: a cross-sectional study based on medical records.

OBJECTIVE: To estimate the prevalence of severe dual sensory loss (DSL) among older persons (aged ≥65 years) in the Swedish population, to identify the diagnoses that cause severe DSL, and to identify rehabilitation services in which the participants have been involved. DESIGN: A cross-sectional design was applied. Medical records from Audiological, Low Vision, and Vision clinics from two Swedish counties were used. STUDY SAMPLE: 1257 adults, aged ≥65 years with severe hearing loss (HL) (≥70 dB HL) were included, whereof 101 had decimal visual acuity ≤0.3. RESULTS: Based on the population size in the two counties (≥65 years, n = 127,638), the prevalence of severe DSL was approximately 0.08% in the population. Within the group having DSL (n = 101), 61% were women and 71% were aged ≥85 years. Common diagnoses were cataract and/or age-related macular degeneration (AMD) in combination with HL. The rehabilitation services offered were mainly hearing aids and various magnifiers. CONCLUSIONS: The study confirmed previous results, indicating that the prevalence of severe DSL increases with age and that sensorineural HL and cataract, AMD or glaucoma coexist. The identified rehabilitation services mainly focussed on either vision loss or HL but not on severe DSL as a complex health condition.

The Complexities of Nurses' Pain Assessment in Hospitalized Preverbal Children.

BACKGROUND: Preverbal children are at increased risk for underassessment of pain. Pain is a social transaction involving the child in pain and the nurse assessor. However, our understanding of the nurse's part in this transaction is limited. AIMS: The aim of this study was to explore nurses' assessment of pain in hospitalized preverbal children based on self-selected clinical examples. DESIGN: Qualitative, descriptive design. SETTINGS: Five different hospital units in Canada and Norway. All units had an observational pain scale for preverbal children available for use. PARTICIPANTS/SUBJECTS: Nurses (N = 22) with ≥1 year experience caring for preverbal children. METHODS: Individual, semistructured interviews. Data were analyzed using inductive thematic analysis. RESULTS: Nurses' assessment of pain in hospitalized preverbal children emerged as a nonlinear complex process incorporating different actions and reflections in response to the child's situation and expression of distress. Information from parents was routinely included in the assessment, although further parental involvement varied considerably. Although each assessment was personalized to the individual child, the nurse used previous experiences to interpret observations of and information from the child and the parents. Few nurses described using structured pain scales, but when used, these scales were included as only one aspect of their overall assessment. CONCLUSIONS: Nurses preferred pain assessment based on clinical judgment and tailored to the individual child. Implementation strategies that aim to integrate structured pain scales with clinical judgment to assess pain may be more likely to succed. Further examination of this approach is warranted.

Public health nurses' perceptions of interprofessional collaboration related to adolescents' mental health problems in secondary schools: A phenomenographic study.

AIMS AND OBJECTIVES: To describe the variation in public health nurses' perceptions of interprofessional collaboration related to adolescents' mental health problems in secondary schools in Norway. BACKGROUND: Mental health problems among adolescents account for a large portion of the global burden of disease and affect 10%-20% of adolescents worldwide. Public health nurses in school health services play an important role in disease prevention and promotion of physical and mental health. In order to serve adolescents with regard to mental health problems, public health nurses are dependent on collaboration with other professionals in schools. DESIGN: Qualitative interviews were conducted with 18 public health nurses working in the school health services. METHOD: A phenomenographic approach was used for interviewing and for analysing the qualitative interviews. This study is presented in line with COREQ's checklist. RESULT: The analysis resulted in three descriptive categories based on eight identified conceptions. The categories are as follows: "The formal structure has an impact on interprofessional collaboration"; "The public health nurse is an important, but not always self-evident, partner in interprofessional collaboration"; and "The primary players are the teachers in collaboration." CONCLUSION: The public health nurses describe that they had limited impact on collaboration and were dependent on both the school principal and the teachers for achieving good collaboration. Teachers have the power to decide whether to collaborate with the public health nurse, and public health nurses regard teachers as the most important collaborative partners. The public health nurses need to make themselves and their competence visible. RELEVANCE TO CLINICAL PRACTICE: The findings demonstrated that public health nurses are important collaborators, but are not always included in interprofessional collaboration. This knowledge is essential to strengthen public health nurses' roles and presence in schools, which could most certainly benefit adolescents with mental health problems in secondary school.

Radiographers' experience of risks for patient safety incidents in the radiology department.

AIMS AND OBJECTIVES: To describe potential risks for patient safety incidents in the radiology department from a radiographer's perspective. BACKGROUND: A radiology department is a high-tech environment with high communication activity between different healthcare systems in combination with a large patient flow. Risks for patient safety incidents exist in every phase of a radiological examination. Due to the nature of the activity, a radiology department needs to have its own range of measures to prevent risks linked to radiology. DESIGN: A qualitative descriptive design. METHODS: Semi-structured interviews were carried out with 17 radiographers during the period September 2015 to February 2016. The data were analysed using conventional content analysis. This study followed the COREQ checklist criteria for the reporting of qualitative research. RESULTS: The analysis yielded 20 different patient safety incidents that could result in the following six types of healthcare-associated harm: Patients could be exposed to unnecessary radiation; patients could receive an inaccurate diagnosis; patients could incur drug-induced damage; patients could suffer direct physical injury; or, their examination and treatment could be delayed or not carried out; or, their general health condition could deteriorate. CONCLUSION: Lack of communication and knowledge, both internally and externally, can increase risks for patient safety incidents. The study describes a complex chain of activities that represent risks in the radiology department. It needs to be pointed out that it is not always the activities in the radiology department that cause the harm. RELEVANCE TO CLINICAL PRACTICE: To carry out preventive patient safety work, a comprehensive analysis of the entire care chain is required. Patient safety work should also focus on improvement in communication both internally, within the radiology department, and externally. Standardised methodological guidelines, consistent prescriptions of method from the radiologist and a good working environment are internal success factors for patient safety at the radiology department.

Fear and Coping in Children 5-9 years old Treated for Acute Lymphoblastic Leukemia - A Longitudinal Interview Study.

PURPOSE: The aim of this study was to describe the fears of 5- to 9-year-old children related to having acute lymphoblastic leukemia (ALL) and their strategies for coping with those fears. DESIGN AND METHODS: The study had a qualitative descriptive longitudinal design and included a total of 35 interviews with 13 children at three different times during their treatment period. Data were analyzed using a matrix-based method inspired by the work of Miles et al. RESULTS: Initially, most children reported a fear of needles, but during the treatment period, fewer children reported this fear. Children's coping strategies also changed over time, as they wanted more involvement and control during needle-related procedures. Other fears were having adhesive tapes removed, having a nasogastric tube, and taking tablets. During the treatment period, existential fears related to the seriousness of ALL and its consequences, such as having impaired physical fitness and being different from before and different from others, became more prominent and caused feelings of loneliness and alienation. CONCLUSIONS: The children described various fears through their treatment period, which they coped with using cognitive, emotional, and functional strategies. Over the 2.5-year period, their strategies changed. PRACTICAL IMPLICATIONS: Because fears changed over time and varied among these different children, each child must be approached individually and attentively in every encounter.

Experiences of interprofessional collaboration in a special school programme for adolescents who struggle with school life: an explorative study.

A growing proportion of adolescents struggle with school life and could benefit from special school programmes. School could be an arena for supporting such adolescents and, to meet these challenges, interprofessional collaboration (IPC) has been recommended for better health. The aim of the present study was to explore the experience of IPC in a special school programme offered to adolescents who struggle with school life - from the perspective of the professionals involved. Focus group interviews were carried out with four groups and fourteen participants, and the focus groups included two to five participants each. The focus group interviews were analysed using qualitative content analysis. The analyses from this study resulted in a main theme: IPC in the special school programme is unpredictable. Five categories emerged from the data, including: variations in initiative, significance of individual characteristics, informal and formal contact, lack of criteria and goals, and different obligations. The participants described IPC as differing from case to case, with a lack of criteria and goals for adolescents in the special school programme. They experienced the random nature of whoever took the initiative to collaborate, and that confidentiality and the different documentation requirements could affect IPC.

Parents of adult children with long-term mental disorder: Their experiences of the mental health professionals' approach and feelings of alienation - A cross sectional study.

The aim was to describe how parents of adult children suffering from long-term mental disorder experience the mental health professionals' approach and any feelings of alienation regarding the provision of care. A further aim was to investigate any differences according to the parents' gender or the child's age. 93 mothers and 37 fathers participated. A majority experienced the mental health professionals' approach toward them as being negative and they felt alienated from the professional care. Regardless of the age of the children, parents have a considerable need for a positive approach from the professionals that can enable them to choose how they should act and what they should do, in order to help and support their adult child.

Providing Good Care in the Shadow of Violence - An Interview Study with Nursing Staff and Ward Managers in Psychiatric Inpatient Care in Sweden.

The aim was to describe the nursing staff and ward managers' experiences of safety and violence in everyday meetings with the patients. The qualitative content analyses resulted in four themes: the relationship with the patient is the basis of care; the organizational culture affects the care given; knowledge and competence are important for safe care; and the importance of balancing influence and coercion in care. The staff had a varied ability to meet patients in a respectful way. One way of creating a common approach could be to discuss and reflect upon different options in the meeting with the patient.

Cultural adaptation and harmonization of four Nordic translations of the revised Premature Infant Pain Profile (PIPP-R).

BACKGROUND: Preterm infants are especially vulnerable to pain. The intensive treatment often necessary for their survival unfortunately includes many painful interventions and procedures. Untreated pain can lead to both short- and long-term negative effects. The challenge of accurately detecting pain has been cited as a major reason for lack of pain management in these non-verbal patients. The Premature Infant Pain Profile (PIPP) is one of the most extensively validated measures for assessing procedural pain in premature infants. A revised version, PIPP-R, was recently published and is reported to be more user-friendly and precise than the original version. The aims of the study were to develop translated versions of the PIPP-R in Finnish, Icelandic, Norwegian, and Swedish languages, and to establish their content validity through a cultural adaptation process using cognitive interviews. METHODS: PIPP-R was translated using the recommendations from the International Society for Pharmacoeconomics and Outcomes Research and enhanced with cognitive interviews. The respondent nurse was given a copy of the translated, national version of the measure and used this together with a text describing the infant in the film to assess the pain of an infant in a short film. During the assessment the nurse was asked to verbalize her thought process (thinking aloud) and upon completion the interviewer administered probing questions (verbal probing) from a structured interview guide. The interviews were recorded, transcribed, and analyzed using a structured matrix approach. RESULTS: The systematic approach resulted in translated and culturally adapted versions of PIPP-R in the Finnish, Icelandic, Norwegian and Swedish languages. During the cultural adaptation process several problems were discovered regarding how the respondent understood and utilized the measure. The problems were either measure problems or other problems. Measure problems were solved by a change in the translated versions of the measure, while for other problems different solutions such as education or training were suggested. CONCLUSIONS: This study have resulted in translations of the PIPP-R that have content validity, high degree of clinical utility and displayed beginning equivalence with each other and the original version of the measure.

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.

Child healthcare nurses' experiences of asking new mothers about intimate partner violence.

AIMS AND OBJECTIVES: To investigate child healthcare nurses' experiences of asking mothers of 8-month-old children about intimate partner violence using a two-step questionnaire. BACKGROUND: Exposure to intimate partner violence is detrimental to women and to their children, and its early detection is vital. Child health care is a promising setting for detecting intimate partner violence. DESIGN: The overall project had a quasi-experimental design and was employed in 2015 at 12 child healthcare centres in Sweden. The project aimed to test a two-step method for talking about intimate partner violence with mothers (n = 198) at the child healthcare centre. In this article, we disclose the experiences of the intervention from the perspective of the nurses (n = 13) who were educated and involved in the intervention. METHODS: Data were collected by semi-structured interviews, analysed by thematic analysis. RESULTS: Five categories emerged: using the two-step questionnaire method, asking about IPV as an important issue, being comfortable in the professional role and with asking about IPV, the importance of time and place in asking about IPV and spillover effects. CONCLUSIONS: Asking mothers visiting the child health clinic about their experiences of intimate partner violence was seen as an important task. Using a questionnaire could facilitate asking, but the questionnaire must be short and easy to use. Furthermore, the time and place for initiating a talk about this sensitive topic must be carefully chosen. RELEVANCE TO CLINICAL PRACTICE: The Violence in Families questionnaire was regarded as a useful tool and could thus be implemented in practice. However, it is important to offer education to the nurses prior to implementing a routine of asking about intimate partner violence in the child healthcare setting.

A Qualitative Study of the Experiences of Norwegian Parents of Very Low Birthweight Infants Enrolled in a Randomized Nutritional Trial.

PURPOSE: 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). DESIGN AND METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. PRACTICE IMPLICATIONS: 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.