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Background: In this paper, we share our experiences of using 'photovoice' methodology as a way to generate data in intensive care units concerning the place and space of care. We have adapted and modified 'photovoice' in researching people's lived experiences of ICU. Researching lived experiences in an intensive care context is challenging because of the complex nature of critical care. Aim: This study aims to explore and discuss photovoice methodolgy in ICU as a data collection method. Materials and Methods: Photos and interviews collected from patients, loved ones and staff collected in a previous research proejct. Results: Although there are challenges in using cameras and photographing the environment in the ICU, due to ethics and the voiceless patients therein, many advantages are presented to the researchers in capturing the meaning of lived experiences of various phenomena in the lifeworld in general and in the meaning of place and space. This paper offers applications and reflection over ontological, epistemological and methodological concerns and also offers a detailed approach on how to employ photovoice for successful and rich data generation. Discussion: developing and adapting scientific methods and methodologies contributes to knowledge development in caring science and is therefore an important subject of matter. Conclusions: Photovoice also presents a powerful tool in disseminating the findings as it opens up the closed world of ICU to the public and increases people's understanding of the significance of place and space of caring practice. [ABSTRACT FROM AUTHOR]

Background: Family members provide the majority of informal care for older adults in Sweden. Nevertheless, by providing a range of assistance, peers often emerge as a central to counter social isolation among older adults. Therefore, there is a need to know more about what informal care provision by older adults to their peers means for different groups of older adults. Aim: This study investigated the types of informal care and support that older adults provide to their peers in Sweden, and how these types of care and support are associated with demographic characteristics and social isolation. We also compared older adults who provide informal care and support with those who do not. Method: For this purpose, we used a national online survey named "Involuntary loneliness among senior citizens" answered by 10,044 older adults enrolled in the Swedish Citizen Panel. We adopted a mixed‐method design to analyse the survey data, including free‐text options (n = 2155) and numerical data. Social isolation was assessed using a score built from the social loneliness items of the UCLA Loneliness Scale. Results: In our population, 21.5% of the older adults were providing informal care and support to their peers. Practical/instrumental help was frequently offered by younger participants (<75 years), men and respondents who were less socially isolated. On a general level, the factors that were positively associated with giving informal care and support to peers were older age, being male, retired, married/living in a relationship, living in an urban area/big city and exhibiting greater isolation. Focusing specifically on social support shows that older participants (>80) and those experiencing less social isolation (score < 24) were more engaged in social activities. Conclusion: This paper is unique in exploring the informal peer‐caregiver's perceptions of isolation. Data were collected during the COVID‐19 pandemic; this highlights the need to recognise informal care and support between older adults and to acknowledge their contributions as an essential component of Swedish civil society, especially during a societal crisis. [ABSTRACT FROM AUTHOR]

Background: Depressive mood is a common problem among children in Western countries. Professionals in school and other health services have an important role in identifying children at increased risk for depression. The Short Mood and Feelings Questionnaire (SMFQ) is a widely used screening tool, but its 13 items still make it quite time‐consuming to complete. There is an urgent need for a quick and easy‐to‐complete self‐report depressive mood scale for use in school health examinations. Aim: This paper aims to describe and validate a revised version of SMFQ: FsMFQ‐6 is intended as a short screening tool for the early identification of depressive symptoms in children. Methods: Nationally representative data (n = 95,725) were drawn from the 2017 School Health Promotion Study. The respondents were fourth‐ and fifth‐grade pupils (aged 10–12) in Finnish primary schools. The data were analysed separately by gender. The construct validity of the scale was studied by principal component analysis and confirmatory factor analysis (CFA), convergent validity by both receiver operating characteristic (ROC) analysis and Spearman's correlation coefficient. Reliability was tested by Cronbach's alpha coefficient. Results: Principal component analysis yielded a one‐component model: the Finnish Short Mood and Feelings Questionnaire 6 (FsMFQ‐6). CFA confirmed the validity of FsMFQ‐6. Compared with mood at home (AUC = 0.80) and mood at school (AUC = 0.85), overall sensitivity and specificity were optimal at cut‐off point 0. Cronbach's alpha coefficient was 0.73, indicating good internal consistency. The results for girls and boys were almost identical. Conclusion: The results confirmed the validity and reliability of FsMFQ‐6. FsMFQ‐6 recognises depressive mood in children and is suitable for screening depressive symptoms in fourth‐ and fifth‐grade pupils in Finland. However, it is important to pay close attention to children who choose the 'Sometimes' response option more than once, for that can be a sign of depressive symptoms. [ABSTRACT FROM AUTHOR]

Introduction: The Indigenous people of Norway are legally entitled to use their Sámi language in encounters with healthcare services, yet these encounters are generally conducted in Norwegian language. The right to Sámi language and culture in health is particularly relegated when Sámi healthcare personnel is not present. This neglect of Sámi language and culture in the Norwegian healthcare system impacts on the quality of care Sámi patients receive. Aim: This paper describes and interprets healthcare interactions between nurses and Sámi‐speaking patients in Norway. Method: Qualitative semi‐structured focus group interviews were conducted with Sámi (n = 13) and Norwegian nurses (n = 10). Participants were included if they had experience working with Sámi‐speaking patients and two years clinical practice in the Sámi area of northern Norway. Interpretive and descriptive analyses were conducted. Findings: Obtaining only basic patient information and lack of mapping of native language in admission documents or patient notes makes it challenging to recognise Sámi patients. In encounters with Sámi patients, Norwegian nurses must navigate linguistic challenges with an additional layer of interplay between culture and care. Misunderstandings in this area can undermine patient safety and be directly contrary to health legislation and patient rights. As remedy, Sámi nurses often improve the nurse–patient dialogue by translating and explaining cultural nuances, thus improving understanding of healthcare interactions, and bridging the gap to the Norwegian staff. Conclusion: To integrate Sámi language and culture into nursing care new guidelines to implement knowledge of Sámi patients' culture and language rights in healthcare education is needed. In addition, the authorities have to facilitate implementation of laws and regulations, research and guidelines in practical health care. At last, the number of Sámi‐speaking nurses has to increase. [ABSTRACT FROM AUTHOR]

Background: To facilitate change for person‐centred care, there is a need to invest in measures to assess if and how healthcare systems are delivering care based on the principles of person‐centred care. This paper describes the first phase in developing an item bank to measure patients' experiences of person‐centred care. Aim: The aim was to translate, culturally adapt and evaluate candidate items to measure person‐centred care from the patient's perspective. Methods: The Centre for person‐centred care at Gothenburg university and the UK Person‐centred and coordinated care model informed our conceptual framework. The initial pool of item candidates originated from a previous systematic review where 855 items were identified. In this study, a mixed method design was used involving persons with experience as patients, caregivers, healthcare professionals and researchers in person‐centred care or questionnaire design (n = 84). The item analysis included two validation rounds using web questionnaires, a focus group and cognitive interviews. Results: From the initial pool, 155 items covering core domains and subdomains of person‐centred and coordinated care were selected for translation and qualitative item analysis. After translation, 44 items were excluded (duplicates). After the first validation round, 21 items were rephrased and 35 were excluded (due to low ratings, lack of comprehensibility, were duplicates or too specifically phrased). To reflect the ethical basis of person‐centred care, rewordings were also made to encompass the patient as an active partner in care and where communication and information goes two‐ways and care is co‐created. After the second round, 11 items were rephrased and 25 items were excluded (for being redundant/repetitive). Six new items were added (covering access to care, patient capabilities, mental well‐being and identifying goals). Conclusion: We have developed a first set of 57 items to proceed towards developing an item bank to measure the patient experiences of person‐centred care. [ABSTRACT FROM AUTHOR]

While shared personal experiences are a valued prerequisite of the peer supporter–service‐user relationship, they have the potential to create harm. There are challenges in peer supporters being emotionally ready to hear the experiences of others, and how much personal information peers should disclose. As part of an international study that aimed to explore how peer supporters who worked in a neonatal context (providing support to parents whose infant(s) has received neonatal care) were trained and supported, new insights emerged into how peers' personal stories were used and modified to instil boundaries in peer support services. In this paper, we report on a secondary analysis of the data to describe how peer supporters' stories were valued, used, assessed and moderated in neonatal peer support services; to safeguard and promote positive outcomes for peers and parents. Following University ethics approval, a mixed‐methods study comprising online surveys and follow‐up interviews was undertaken. Surveys were distributed through existing contacts and via social media. Thirty‐one managers/coordinators/trainers and 77 peer supporters completed the survey from 48 peer support services in 16 different countries, and 26 interviews were held with 27 survey respondents. Three themes describe variations in the types of stories that were preferred and when peers were perceived to be 'ready' to share them; the different means by which sharing personal accounts was encouraged and used to assess peer readiness; and the methods used to instil (and assess) boundaries in the stories the peers shared. In neonatal‐related peer support provision, the expected use of peer supporters' stories resonates with the 'use of self' canon in social work practice. Peer supporters were expected to modify personal stories to ensure that service‐user (parents) needs were primary, the information was beneficial, and harm was minimised. Further work to build resilience and emotional intelligence in peer supporters is needed. [ABSTRACT FROM AUTHOR]

In this paper, we explore how the development of historical research methodologies during the last centuries can contribute to more diverse and interdisciplinary research in future caring science, especially towards a care focus that is more person‐centred. The adding of a historical approach by professional historians to the theory of person‐centredness and person‐centred care can develop knowledge that enables a more holistic understanding of the patient and the development of the patient perspective from the past until today. Thus, the aim was to show how developments within historical methodology can help us to understand elements of care in the past to further develop caring science in future. Historical research methodologies have advocated a "history from below" perspective, and this has enabled the evolution of systematic approaches to historical research that can be explored and critically analysed. Linked with this, the development of a more social and cultural oriented understanding of historical research has enabled historians to explore and add knowledge from a broader societal perspective. By focusing on the life of ordinary people and taking social and cultural aspects into account when trying to reconstruct the past, we can get a deeper understanding of health, care and medical development. However, an interdisciplinary research focus on person‐centredness and person‐centred care that includes professional historians can be challenging. In this paper, we argue that a historical perspective is necessary to meet the challenges we face in future delivery of health care to all people, in all parts of society in an ever more global world. [ABSTRACT FROM AUTHOR]

Introduction: With governments worldwide reducing their involvement in the provision of institutional long‐term elder care, community‐based family caregivers (FCs) have become a key element in policies aimed at improving the quality of healthcare systems and maintaining their financial sustainability. This paper uses data from focus groups with FCs providing care to older adults to describe their approaches to and priorities for achieving care quality and sustainability as they work with formal health and social care systems. It describes FCs' views on information and communications technology (ICT) as potential supports for achieving these care quality and sustainability goals. Methods: We held 10 focus groups from May 2017 to August 2018 and recruited 25 FCs through a mix of convenience and snowball sampling strategies. We employed an inductive approach and used qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis. Results: Quality of care – as delivered by both FCs themselves, and formal health and social care systems – was a major preoccupation for our participants. They saw communications quality as a key aspect of the broader concept of care quality. Our data analysis produced a typology of communications quality from the FC perspective. Analysis of our data also revealed ICT development opportunities and available products in key areas. Conclusions: Our findings suggest that the formal care system providers could be more caregiver‐oriented in their communications by engaging FCs in the decision‐making process and allowing them to express their own concerns and goals. The implication of our findings for those seeking to develop policies and ICT products in support of FCs is that these should focus on human relationships and seek to expand facilitative communications. [ABSTRACT FROM AUTHOR]

Systemic lupus erythematosus (SLE) is a highly unpredictable and potentially lethal disease which ultimately challenges identity, future and the meaning of life. In a caring context, the experience of good health is perceived to be a balance between biomedical health and the existential experience of having a good life. This balance is jeopardised in the face of severe chronic illness and leads to extensive suffering if not handled carefully. Research suggests that patients suffering from severe chronic illness need support on an existential level, but also emphasises that, given its elusive nature, caring for the existential dimension is difficult to manage. This paper explores the experience of being diagnosed with SLE as an existential phenomenon. Through repeated phenomenological and hermeneutic interviews with 15 women conducted from 2013 to 2015, data concerning the diagnostic phase of SLE were analysed using Van Manen's phenomenology of practice. The essence was found to be a standstill in life comprehended through three inter‐related themes: standing in a swirl of events, standing on uneven ground and standing at a turning point with oneself and others. The paper elucidates how existential life phenomena are lived, during the course of being diagnosed. In conclusion, it provides an ethical awareness of how a standstill in life is lived and of the patients’ existential transition during the diagnostic phase. A holistic approach is recommended in caring for patients with SLE. [ABSTRACT FROM AUTHOR]

Background: Nursing was established in Denmark as a scholarly tradition in the late nineteen eighties, and ethnography was a preferred method. No critical review has yet summarised accomplishments and gaps and pointing at directions for the future methodological development and research herein. Aim: This review critically examines the current state of the use of ethnographic methodology in the body of knowledge from Danish nursing scholars. Methods: We performed a systematic literature search in relevant databases from 2003 to 2016. The studies included were critically appraised by all authors for methodological robustness using the ten‐item instrument QARI from Joanna Briggs Institute. Results: Two hundred and eight studies met our inclusion criteria and 45 papers were included; the critical appraisal gave evidence of studies with certain robustness, except for the first question concerning the congruity between the papers philosophical perspective and methodology and the seventh question concerning reflections about the influence of the researcher on the study and vice versa. In most studies (n = 34), study aims and arguments for selecting ethnographic research are presented. Additionally, method sections in many studies illustrated that ethnographical methodology is nurtured by references such as Hammersley and Atkinson or Spradley. Conclusions: Evidence exists that Danish nursing scholars’ body of knowledge nurtures the ethnographic methodology mainly by the same few authors; however, whether this is an expression of a deliberate strategy or malnutrition in the form of lack of knowledge of other methodological options appears yet unanswered. [ABSTRACT FROM AUTHOR]

Background: Since the beginning of 2000, the primary healthcare services around the globe are challenged between demands of home care and number of staff delivering it. The delivery of healthcare needs new models to reduce the costs, patient's readmission and increase their possibilities to stay at home. Several paramedicine programmes have been developed to deliver home care as an integral part of the local healthcare system. The programmes varied in nature and the concept of Community Paramedicine (CP) has not been established, demanding clarity. The aim of this review was to identify and describe the core components of CP, and identify research gaps for the further study. Method: A scoping review was performed using five electronic databases: Medline; CINAHL; Academic Search Premier; PubMed and the Cochrane Library for the period 2005 – June 2018. The references of articles were checked, and papers were assessed against inclusion criteria and appraised for quality. Results: From 803 initial articles, 21 met the criteria and were included. Inductive content analysis was carried out. The four core components of Community Paramedicine emerged (a) Community engagement, (b) Multi‐agency collaboration, (c) Patient‐centred prevention and (d) Outcomes of programme: cost‐effectiveness and patients' experiences. Conclusion: The Community Paramedicine programmes are perceived to be promising. However, Community Paramedicine research data are lacking. Further research is required to understand whether this novel model of healthcare is reducing costs, improving health and enhancing people's experiences. [ABSTRACT FROM AUTHOR]

This paper reports a study conducted to illuminate older adults' perceptions of multiproffesional team's caring skills as success factors for health support in short‐term goal‐directed reablement. The fact that older adults are given perquisites to live in their own homes puts great demands on the professional care given them at home. An option offered could be short‐term goal‐directed reablement delivered by an interprofessional team. This means after periods in hospitals to strengthen their multidimensional health, older adults' reablement processes are supported to return to their daily life as soon as possible. Crucial in making these intentions a reality seems to be identifying the professional's approach that works as success factors for health support in the reablement process. A descriptive qualitative design with a phenomenographic approach based on interviews with 23 older persons who had received short‐term goal‐directed reablement at home after a period at hospital was used. The study was approved by an ethical board. The analysis revealed four major referential aspects of multiproffesional team's caring skills as success factors for health‐support in short‐term goal‐directed reablement: a motivating caregiver, a positive atmosphere‐creating caregiver, a human fellowship‐oriented caregiver and a caregiver that goes beyond the expected. In this study, all caring skills in the continuum are perceived as positively loaded necessities in different situations during the reablement process. Caring skills as success factors are initially shown at a practical level, such as how the professional caregivers encourage and motivate the older persons in different training situations. At a deeper level, the caregivers open their hearts and have the capacity to go beyond the expected in the professional caregiver–patient relationship. The multiproffesional team's best fit caring skills during the home reablement process need to be addressed as evidence base in the area of elderly home care. [ABSTRACT FROM AUTHOR]

The aim of this systematic review was to describe the association between adolescent sense of coherence ( SOC) and health and identify the future direction for research in this area. Systematic searches were conducted (2007-2014) in the PubMed, CINAHL, Psyc INFO and Cochrane electronic databases and carried out manual searches in three scientific journals. A total of 827 original papers were found and 23 were selected. Based on the results, adolescents' sense of coherence ( SOC) was related to health in terms of the adolescents' quality of life, health behaviour, mental health and family relationships by using 31 different health-related instruments. In conclusion, the use of the SOC approach for adolescents can provide a useful view of their health during this transition phase to adulthood. Due to the large variation in the additional instruments used, combining and comparing the results proved challenging. More comparative and longitudinal research is needed to increase understanding of adolescents' health in relation to SOC and develop services that support both elements. [ABSTRACT FROM AUTHOR]

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' ( AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs. [ABSTRACT FROM AUTHOR]

Background Whittemore and Knafl's updated description of methodological approach for integrative review was published in 2005. Since then, the five stages of the approach have been regularly used as a basic conceptual structure of the integrative reviews conducted by nursing researchers. However, this methodological approach is seldom examined from the perspective of how systematically and rigorously the stages are implemented in the published integrative reviews. Purpose To appraise the selected integrative reviews on the basis of the methodological approach according to the five stages published by Whittemore and Knafl in 2005. Design A literature review was used in this study. CINAHL (Cumulative Index to Nursing and Allied Health), PubMed, OVID (Journals@Ovid) and the Cochrane Library databases were searched for integrative reviews published between 2002 and 2014. Papers were included if they used the methodological approach described by Whittemore and Knafl, were published in English and were focused on nursing education or nursing expertise. A total of 259 integrative review publications for potential inclusion were identified. Results Ten integrative reviews fulfilled the inclusion criteria. Findings from the studies were extracted and critically examined according to the five methodological stages. The reviews assessed followed the guidelines of the stated methodology approach to different extents. The stages of literature search, data evaluation and data analysis were fairly poorly formulated and only partially implemented in the studies included in the sample. The other two stages, problem identification and presentation, followed those described in the methodological approach quite well. Conclusion Increasing use of research in clinical practice is inevitable, and therefore, integrative reviews can play a greater role in developing evidence-based nursing practices. Because of this, nurse researchers should pay more attention to sound integrative nursing research to systematise the review process and make it more rigorous. [ABSTRACT FROM AUTHOR]

Aim This paper aimed to suggest possible answers to the question: Why do patients with COPD decline pulmonary rehabilitation ( PR)? Method The study is a metasynthesis inspired by Noblit of the existing qualitative research on the area. The data were collected during 2014. Six studies were found through a systematic literature search in relevant databases. In these six studies, 65 persons were identified as decliners of PR. Four themes were identified from these studies. Results The themes identified were as follows: the referral process, transport problems, perception of health and other obligations or priorities. The problems with the referral of patients relate to different areas: the referring health professional's conviction and commitment, and the patients' understanding of the referral. It seems that various transport problems cause decline, for example long distance to the PR centre or the expenses of getting back and forth. Perceptions of health cause decline. Decliners feel too sick to join PR or do not identify themselves as a sick person, and do not want undertake the 'patient role'. Other obligations or priorities such as work, family obligations and vacations are prioritised on behalf of PR causing decline. Conclusion The studies included show patients' rational accounts and reflections on declining PR. The included studies tend to describe accounts for deselection of PR in relation to the preferences and beliefs of the patients rather than including the social and economic variables framing the behaviour and choices of the patients. [ABSTRACT FROM AUTHOR]

Scand J Caring Sci; 2004; 18; 249–256The application of grounded theory and symbolic interactionismThis paper describes the methodological and theoretical context and underpinnings of a study that examined community psychiatric nurses’ work with family caregivers of older people with depression. The study used grounded theory research methods, with its theoretical foundations drawn from symbolic interactionism. The aims of the study were to describe and conceptualize the processes involved when community nurses work and interact with family caregivers and to develop an explanatory theory of these processes. This paper begins with an explanation of the rationale for using grounded theory as the method of choice, followed by a discussion of the theoretical underpinnings of the study, including a brief summary of the nature and origins of symbolic interactionism. Key premises of symbolic interactionism regarded as central to the study are outlined and an analytical overview of the grounded theory method is provided. The paper concludes with a commentary on some of the issues and debates in the use of grounded theory in nursing research. The main purpose of this paper is to provide a methodical and critical review of symbolic interactionism and grounded theory that can help readers, particularly those who are intending to use grounded theory, better understand the processes involved in applying this method to their research. [ABSTRACT FROM AUTHOR]

Background In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci. Methods A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'. Results A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age. Conclusions The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes. [ABSTRACT FROM AUTHOR]

Aims The purpose of this study was to develop and validate a survey to investigate parents' satisfaction with neonatal wards in a population of parents of children with a gestation age of ≥24 weeks to 3 months after full-term birth. Method We explored the literature and conducted three focus groups: two with expert health personnel and one with parents. We tested the survey in a parent population ( N = 105) and report the different stages in the validation process along with the full survey, the Neonatal Satisfaction Survey - 13 categories ( NSS-13). Results We found 13 subcategories in the Neonatal Satisfaction Survey. The subcategories measure parents' satisfaction with neonatal units based on staff, admission, nurses, anxiety, siblings (parents' perceptions of caring for the siblings of the newborn), information, timeout, doctors, facilities, nutrition, preparation for discharge, trust and visitors. Each subcategory showed acceptable internal consistency. The full version of the Neonatal Satisfaction Survey presents 69 items, and each subcategory contains two to eleven items. Conclusion The Neonatal Satisfaction Survey seems suitable to measure parents' satisfaction with neonatal units and can be used in full, but it can also measure subcategories. Parents' satisfaction with neonatal units can be used to improve the quality in such wards. We consider this study as the first in a series to validate the NSS-13. The full survey with subcategories is presented in this paper. [ABSTRACT FROM AUTHOR]

Background Social support is essential for physical and mental health and well-being. Evidence indicates that social and peer support is particularly important and beneficial for the well-being of those who care for children with chronic illness or disability in improving personal well-being and influencing parent-child play opportunities and child behaviour and development positively. MyTime is a government-funded Australia-wide facilitated peer support group program for carers of children with special needs. Aim The aim was to investigate the barriers and promoters of participation in this peer support group program. Method A qualitative approach was adopted where semi-structured telephone interviews were conducted with 20 group members, four group facilitators and three play helpers. Interviews were recorded and transcribed. Inductive thematic analysis of the transcripts was conducted. Results Most group members described gaining significant social support from group participation. Good group facilitation, the availability of play helpers, access to disability-related information and expertise, and the mutual exchange of support between members emerged as the most important promoters of group participation. Barriers included insufficient funding to run the program throughout the year, too much diversity in group members' socio-economic position and severity of their children's disability. Conclusion The facilitated peer support group program described in this paper appears to confer significant benefits to carers of children with disabilities and may be a model for other nations to consider in their strategies to improve services for carers of children with special needs. [ABSTRACT FROM AUTHOR]

This paper is a descriptive study of nursing in facilities for short-term stay, aiming to outline the expectations and needs for nursing of patients undergoing gastroscopy in outpatient endoscopy clinics. Existing research finds it important to meet patients' expectations and needs for help to get through a procedure in the best and safest way possible. Despite recent years' focus on patient expectations, little attention has been paid to understanding the patients' distinct expectations and needs for nursing in the context of facilities for short-term stay. A fieldwork study influenced by practical ethnographic principles was performed in high-technology endoscopy outpatient clinics during 2008 - 2010. Data were collected using triangulation of participant observation for 12 weeks including participant reports and semi-structured interviews with eight patients and four nurses. The expectations and needs for nursing of patients undergoing gastroscopy were related to two main areas, summarized by the categories: 'Nervousness and anxiety' and 'Maintaining control'. The former concerned how patients managed their nervousness and anxiety and was described differently in terms of 'Getting it over with', 'The meaning of words' and 'Taking precautions'. The latter 'Maintaining control' concerned how patients in different ways managed to maintain control over their situation and was described in terms of 'Being informed', 'Others are in the same 'boat'' and 'Being proactive'. The study concludes that nervousness and anxiety are expressed differently in patients undergoing gastroscopy and that patients have individual ways of claiming their right to elements of control over the situation and the course of gastroscopy. In order for nursing in endoscopy settings to be tailored to the individual patient, it must be adapted to the individual patient's ways of managing nervousness and anxiety as well as ways of claiming control. [ABSTRACT FROM AUTHOR]

Scand J Caring Sci; 2013; 27; 203-211 Diabetes and end of life: ethical and methodological issues in gathering evidence to guide care Introduction: Providing palliative care for people with diabetes at the end of life is part of the chronic disease care trajectory, but end of life care is complex and the presence of diabetes further complicates management. Aim: The aim of the paper is to discuss the ethical and methodological issues encountered when undertaking research to develop guidelines for managing diabetes at the end of life and the strategies used to address the issues. Method: The issues emerged as we developed guidelines for managing diabetes at the end of life, which included conducting individual interviews with 14 people with diabetes requiring palliative care and 10 family members. A reflexive researcher journal was maintained throughout the guideline development process. The interview transcripts and researcher's journal were analysed to determine key methodological, ethical and researcher-related issues. Findings: Key themes were vulnerability of the sampling population, methodological issues included recruiting participants and ensuring rigor, ethical issues concerned benefit and risk, justice, autonomy, privacy, professional boundaries and informed consent. Researcher-related issues were identified such as managing participant distress and their own emotional distress. People were willing to discuss end of life diabetes management preferences. Conclusions: Undertaking research with people at the end of life is complex because of their vulnerability and the ethical issues involved. However, the ethical principles of autonomy and justice apply and people should be given the relevant information and opportunity to decide whether to participate or not. [ABSTRACT FROM AUTHOR]

Scand J Caring Sci; 2012; 26; 104-112 My, your and our needs for safety and security: relatives' reflections on using information and communication technology in dementia care Aim: The present paper reports on a study aimed at describing relatives′ reflections on different kinds of information and communication technology (ICT) devices that are used or can be used in the daily care of persons with dementia. Background: Many persons with dementia continue living in their own homes, which requires the support of their relatives. One way to meet the needs of relatives and persons with dementia is to use ICT. Methods: An interview study was conducted in Sweden (2007-2008) with a purposive sample of 14 spouses of a person with dementia. Qualitative content analysis was used to identify categories and themes in the data. Findings: Relatives′ reflections on the use of ICT were described as ICT - a support in daily life, ICT - internal and external conditions and ICT - the decision to use or not use. Based on these categories, a theme was revealed: shifting between different perspectives: my, your and our needs for safety and security. Conclusion: Relatives struggle to create a situation of safety and security in daily life for themselves and the persons with dementia. ICT devices with the right functionality and used at the right time are regarded as useful in solving everyday problems. In the decision to use or not use ICT, the opportunity to create a safe and secure environment overshadows potential ethical problems. Providing early information about ICT to persons with dementia and their relatives could facilitate joint decision-making regarding use of ICT. [ABSTRACT FROM AUTHOR]

Scand J Caring Sci; 2010; 24; 38-45 The objectives of this article are to present a measurement instrument for virtues, and to examine the link between virtues and health. The instrument was tested by the occupational health care at a large Finnish pulp and paper manufacturer and was shown to be consistent, valid and reliable. In developing the scale, we had two samples of employees and used factor analysis and partial least squares modelling (PLS) on both samples. Factor analysis showed that pride is the most important virtue, followed by love and generosity. In the PLS analysis, we found virtues to significantly reduce the number of sick days. In addition, we found significant relationships between virtues and fatigue, depression and happiness. Virtuous behaviour decreased sick leave and depression. The virtues had a positive influence on happiness and on improvement in one's health. The results show that by taking into account virtues in working life, companies can significantly improve their employees' well-being. The measurement instrument helps broaden the traditional view on health and is meant to be used by health care professionals in their daily practice. By addressing a person's physical, mental and virtual well-being, health care practitioners can take care of employees on a broader level than before. [ABSTRACT FROM AUTHOR]

The biological sciences have contributed an extensive volume of research in efforts to resolve chronic pain, and an expanding body of research focusing on the psychosocial aspects of chronic pain, is now also evident. Paradigms applied to chronic pain appear to compete and lack an integrative framework. This paper builds a case for framing chronic pain within a complex adaptive systems (CAS) paradigm and explores how paradox, one of the key features of a CAS, contributes to maintaining ‘chronicity’ in the system. A complexity science paradigm can serve as a meta-framework, integrating theoretical models employed in chronic pain and reframing dissent and conflict as positive generative forces for change. Interventions, based on complexity science principles, can effect change in the highly interactive systems that constitute the chronic pain experience. [ABSTRACT FROM AUTHOR]