Search

Background and objective: End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health‐care professionals' perspectives. Design: This explorative study employed qualitative interviews and content analysis. Setting and participants: Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results: In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients' performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions: Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed. [ABSTRACT FROM AUTHOR]

Accessible summary: Sleep hygiene education (SHE) is a "behavioural" intervention which helps parents create the best sleeping conditions for their child. It is often used to improve sleep problems that children with developmental disabilities have.SHE includes advice around creating bedtime routines, creating a calming bedroom environment and eating healthily. Lots of health and social care professionals use SHE, but there are not many research papers which show the best way to support parents to try out the advice.This research tells the story of nine parents and eleven professionals who have used SHE to help improve children's sleep problems.Their experiences are important in the research literature and will help services such as community children's learning disability teams improve the way SHE is used in the future. Background: Sleep hygiene education (SHE) is a familiar intervention for addressing behavioural sleep problems in children with developmental disabilities that involves advising parents on sleep‐promoting behaviours; however, it is supported by a limited evidence base. Materials and methods: This exploratory study aimed to enhance qualitative understanding and explore stakeholder perceptions about experience, current practice and ideas around the implementation of SHE. Parents of children with developmental disabilities and sleep problems (N = 9) and sleep practitioners (N = 11) took part in semi‐structured interviews and focus groups, and data were thematically analysed. Results and discussion: The analysis identified four parent themes: Beliefs about sleep problems; Getting professional help; Ways of knowing about sleep; and Visions of sleep support. Two practitioner themes were also identified: Sleep service accessibility and Inconsistent sleep support. Conclusion: The findings provide further insight into how parents of children with developmental disabilities experience sleep problems, and how SHE is currently implemented. These have implications for both policy and practice. [ABSTRACT FROM AUTHOR]

Tumour genetics is currently turning into a massive clinical approach. This paper is an enquiry into its practices as they expand beyond expert and experimental contexts and become routinised in clinical hospital settings. Studying a French university hospital, we unpack the content and everyday organization of diagnostic labour in this context. Exploring the sociotechnical frictions that arise in the process, we describe the ways in which they are collectively controlled, and stabilized through organizational fictions, that are instrumental in making tumour genetics doable in the hospital, at a large scale. We further show that the new role of external regulations in the production of clinical values for mutations has a strong impact on diagnostic work, making it possible to be performed locally without resorting to expert bioclinical collectives, and outside the professional jurisdiction of clinical geneticists. This division of labour appears as a necessary condition for the rise in clinical productivity required by a new function assigned to genetics: to guide the prescription of drugs for common diseases. This turn in the way genetics is embedded in the clinic calls for a thorough reassessment of its impacts on clinical discourses, practices and decisions. [ABSTRACT FROM AUTHOR]

Agricultural research in developing countries often involves collaboration between dispersed multicultural teams of scientists from developed and developing countries. The teams use information and computing technologies (ICTs) to communicate between team members, who originate from different cultures using different languages. This paper investigates the usability and utility of a range of ICTs used for communication between team members from different cultures. The research used an intercultural heuristic evaluation tool, or I‐CHET, to evaluate nine ICTs used by Australian and Lao scientists for team communication. The evaluation showed that asynchronous ICTs (e.g., e‐mail) were preferred by non‐native English speakers, while synchronous media (e.g., audio conferencing, instant messaging, Skype) presented considerable problems between team members from different cultures. Most ICTs evaluated in the study demonstrated little consideration for non‐native English speakers and for inexperienced ICTs users. However, all evaluated ICTs demonstrated the ability to transmit information and encourage communication between information users in scientific collaborations. The I‐CHET assessment tool highlights the ongoing need for a "toolbox" of communication ICTs for research collaborations that can be adapted to suit the cultural and professional needs of multinational teams, worldwide. [ABSTRACT FROM AUTHOR]

Rationale: Defensive caesarean section (CS) has become one of the most common medical procedure worldwide. Additionally, performing CS in accordance with the patient's choice is an appropriate professional practice. Aims and Objective: This paper reports a prospective, observational, multicenter study to quantify the use of this type of practice that is performed by obstetricians to avoid medico‐legal complaints and decrease the frequency of malpractice litigations. Methods: We interviewed 73 obstetricians from three distinct units of obstetrics and gynaecology, to assess their opinion regarding defensive caesarean delivery and caesarean delivery performed upon maternal request. We conducted an opinion‐based survey using questionnaires based on nine, close‐ended questions. Results: Out of 73 respondents, 51 (69.9%) stated that they perform defensive CS; 63 (86.3%) declared that their choice of birth delivery is influenced by the risk of being accused of malpractice; 60 (82.2%) indicated that it is normal for the patient to be able to decide on the type of delivery; and 63 (86.3%) declared that they consult their patients regarding their delivery preferences. We found statistically significant differences between the respondents who declare that they perform defensive CS (69.9%) and those who said that they are influenced by the risk of malpractice when they choose the method of delivery for their patients (86.3%) (P < .001; McNemar Test). Conclusions: The results of our study indicate that defensive caesarean section is a widespread practice among obstetrics practitioners in Romania. [ABSTRACT FROM AUTHOR]

Aim: To develop a patient-reported outcome measure that comprehensively captures the health-related priorities of children with Duchenne muscular dystrophy (DMD).Method: Children with DMD and their parents completed the iteratively revised versions of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), followed by a cognitive interview to develop a pilot version of a new measure. Multidisciplinary health care professionals completed an item-by-item analysis of the measure and a 14-item sensibility questionnaire. Minimum content validity ratio for each item of the new measure and the mean score (0-7) for the items of the sensibility questionnaire were calculated.Results: The CPCHILD underwent changes over 19 interviews with children and their parents, resulting in the pilot Muscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD). The content validity ratio of each MDCHILD item ranged from 0.85 to 1 based on health care professionals' ratings. The mean score exceeded the threshold of four for all items of the sensibility questionnaire. Based on child, parent, and health care professional recommendations, 16 items were added, six eliminated, and 15 items modified from the original CPCHILD. The MDCHILD consists of 47 items over seven domains.Interpretation: The MDCHILD met all sensibility criteria by children with DMD, their parents, and health care professionals, and is ready for psychometric evaluation.What This Paper Adds: The Muscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD) is a new patient-reported outcome measure for Duchenne muscular dystrophy (DMD). The Priority Framework of Outcomes underpins the content for the MDCHILD. The MDCHILD incorporates the health-related priorities of males with DMD and their parents. The MDCHILD was deemed sensible by children, their parents, and health care professionals. [ABSTRACT FROM AUTHOR]

Background: For parents who experience stillbirth, knowing the cause of their baby's death is important. A post mortem examination is the gold standard investigation, but little is known about what may influence parents' decisions to accept or decline. Aim: We aimed to identify factors influencing maternal decision‐making about post mortem examination after late stillbirth. Methods: In the New Zealand Multicentre Stillbirth Study, 169 women with singleton pregnancies, no known abnormality at recruitment, and late stillbirth (≥28weeks gestation), from seven health regions were interviewed within six weeks of birth. The purpose of this paper was to explore factors related to post mortem examination decision‐making and the reasons for declining. We asked women if they would make the same decision again. Results: Maternal decision to decline a post mortem (70/169, 41.4%) was more common among women of Māori (adjusted odds ratio (aOR) 4.99 95% confidence interval (CI) 1.70–14.64) and Pacific (aOR 3.94 95% CI 1.47–10.54) ethnicity compared to European, and parity two or more (aOR 2.95 95% CI 1.14–7.62) compared to primiparous. The main reason for declining was that women 'did not want baby to be cut'. Ten percent (7/70) who declined said they would not make this decision again. No woman who consented regretted her decision. Conclusion: Ethnic differences observed in women's post mortem decision‐making should be further explored in future studies. Providing information of the effect of post mortem on the baby's body and the possible emotional benefits of a post mortem may assist women faced with this decision in the future. [ABSTRACT FROM AUTHOR]

Accessible summary Relationships and sexuality are important for disabled people., Through the voices of 16 intellectually disabled adults, this paper shows what they consider to be important in areas such as education or personal relationships., Most of the people interviewed would like to have a partner and live together as a couple., Intellectually disabled people encounter many barriers to obtain certain basic rights., Summary This study starts from the premise that we are sexual beings, and therefore, sexuality is part of our lives and defines us as human beings. This is also true with regard to intellectually disabled people. Within the framework of broader qualitative research carried out in Spain, some partial results of an ongoing study aimed at finding out what a group of adults see as important in different areas of their lives are presented here. Through the personal narratives of 16 intellectually disabled people, this paper explores some of their ideas and demands about sexuality and their sexual lives. Most of the people interviewed expressed their desire to have a partner and to live as a couple. There is no doubt that many intellectually disabled people have greater control over their lives and the decisions that affect them, but as they tell us, the presence of old ideas can hinder them from securing their fundamental rights. [ABSTRACT FROM AUTHOR]

Promoting community participation for people with intellectual disability through encounter with strangers is an integral part of the mission of disability support workers. This paper offers detailed micro-level analysis of the practices of support workers when they accompany a person with intellectual disability outside their home and explores the subtle differences which make some staff practices more effective than others in promoting more convivial encounters with strangers. Based on 160 h of observations of twenty-six adults with intellectual disability in a variety of public places, and interviews and focus groups with their support workers, the paper points to some of the critical judgements support workers need to make when considering whether, when and how to initiate or intervene in such encounters. [ABSTRACT FROM AUTHOR]

This paper investigates the identity constructions of youths who are objects of special interventions in the area of child welfare. The aim of the paper was to explore the various dimensions of resistance to institutional identities among youths in special schools and foster-care institutions. Interviews were conducted with adolescents aged between 12 and 15, identified as having social, emotional and behavioural difficulties. The analysis generates knowledge about society's interventions as well as how adolescents respond to offered institutional identities by adopting different kinds of discursive resistance. The paper highlights the different types of discursive resistance that adolescents use to present themselves as accountable individuals and discusses the importance of considering resistance as a positive force rather than as something that must be defeated. [ABSTRACT FROM AUTHOR]

In salutogenic theory, individual/contextual, immaterial/material characteristics enabling movements towards health are labelled Specific and Generalised Resistance Resources, SRRs/GRRs, and characteristics counteracting such movements Specific and Generalised Resistance Deficits, SRDs/GRDs. The aim of this paper was to present SRDs and GRDs described by caregivers as stemming from themselves and their care recipient. Guided by salutogenic theory, an explorative design was used to collect data through interviews with 32 Swedish informal caregivers. During the theory‐driven analysis, SRDs were unravelled using within‐case approaches. To be able to unite them as GRDs across cases, a serviceable GRD definition was developed from the existing theoretical GRR definition. In findings, SRDs are visualised in citations and GRDs described in detail. Caregivers’ experiences of SRDs/GRDs are presented as themes: ‘Experiencing personal deficiencies’, when stemming from themselves; and ‘Struggling with an uncooperative co‐worker’, when stemming from their care recipients. Findings indicate that if these themes dominate a caregiver's view of life, she/he seems to have reached the ‘breaking point’ when caregiving ends due to lack of usable SRRs/GRRs. To prolong the time until this occurs, support, making otherwise unusable SRRs/GRRs usable, is needed. When designing this type of ‘salutogenic’ support, it seems essential to involve the target group (e.g. caregivers, care recipients), to ascertain what their SRRs/GRRs and SRDs/GRDs may consist of. Such knowledge regarding SRRs/SRDs could be used to design individualised support, and regarding GRRs/GRDs to design generalised support at group level. This study suggests how such new knowledge regarding resistance resources and deficits could be acquired. [ABSTRACT FROM AUTHOR]

This paper presents findings from a study exploring the nurses' experience of caring for adults with intellectual disability and mental health issues in inpatient settings. Semi structured interviews were undertaken with 13 nurses from various regions of New Zealand. Methods suggested by an Appreciative Inquiry methodology were used to explore the nurses' positive experiences of their role. Interviews were transcribed and analysed using open coding and Leximancer (an online data mining tool) analysis to identify dominant themes in the discourse. Analysis revealed themes around 'Contextualising behaviour', 'Communication', 'Confidence to care' and 'Time'. Participants reflected upon their experiences offering personal interpretations in identifying the aspects of nursing that mattered and that worked. What is shown is that nurses were able to describe a range of creative and adaptive ways of nursing in responding to numerous complex factors they faced in their roles. This suggests a strong foundation on which to advance nursing care in this field. [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]

This paper reports on a study that demonstrates how to apply pattern matching as an analytical method in case-study research. Case-study design is appropriate for the investigation of highly-contextualized phenomena that occur within the social world. Case-study design is considered a pragmatic approach that permits employment of multiple methods and data sources in order to attain a rich understanding of the phenomenon under investigation. The findings from such multiple methods can be reconciled in case-study analysis, specifically through a pattern-matching technique. Although this technique is theoretically explained in the literature, there is scant guidance on how to apply the method practically when analyzing data. This paper demonstrates the steps taken during pattern matching in a completed case-study project that investigated the influence of cultural diversity in a multicultural nursing workforce on the quality and safety of patient care. The example highlighted in this paper contributes to the practical understanding of the pattern-matching process, and can also make a substantial contribution to case-study methods. [ABSTRACT FROM AUTHOR]

This paper reports on the findings from a qualitative study into the experiences of parents who were involved in the English child protection system in 2013. Seventeen in-depth interviews were conducted involving 19 parents and/or partners, and a framework approach was used to analyse the data. There were positive experiences of individual social workers and some positive experiences of the child protection system. However, the overwhelming theme of the parents' experiences was that the system was uncaring, inflexible and for some harmful to both themselves and their children. Despite being included in the child protection process, parents felt they were not afforded the same rights as a participant, as a decision-maker or as a partner in seeking to improve the situation. The threat of consequences silenced parents who felt unable to speak out or challenge the things they disagreed with or coerced others into signing agreements they did not agree to. Such experiences related to a sense that they were being treated as 'less than human'. These findings are considered within the context of recent reforms within the English child protection system. [ABSTRACT FROM AUTHOR]

Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in relation to research participation. Focus is on factors that affect women's autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women's participation in research. [ABSTRACT FROM AUTHOR]

Rationale, aims and objectives: Strong health systems are said to be paramount to achieving effective and equitable health care. The World Health Organization has been advocating for using system-wide approaches such as 'systems thinking' to guide intervention design and evaluation. In this paper we report the system-wide effects of a complex health system intervention in Zambia known as Better Health Outcome through Mentorship and Assessment (BHOMA) that aimed to improve service quality. Methods: We conducted a qualitative study in three target districts. We used a systems thinking conceptual framework to guide the analysis focusing on intended and unintended consequences of the intervention. NVivo version 10 was used for data analysis. Results: The addressed community responded positively to the BHOMA intervention. The indications were that in the short term there was increased demand for services but the health worker capacity was not severely affected. This means that the prediction that service demand would increase with implementation of BHOMA was correct and the workload also increased, but the help of clinic lay supporters meant that some of the work of clinicians was transferred to these lay workers. However, from a systems perspective, unintended consequences also occurred during the implementation of the BHOMA. Conclusions: We applied an innovative approach to evaluate a complex intervention in low-income settings, exploring empirically how systems thinking can be applied in the context of health system strengthening. Although the intervention had some positive outcomes by employing system-wide approaches, we also noted unintended consequences. [ABSTRACT FROM AUTHOR]

Many children are exposed to intimate partner violence against their mothers. Countering assumptions that abused women 'fail to protect' their children, this paper presents the results of a Canadian qualitative study that examined the protective strategies of 18 abused mothers, most of whom are Aboriginal. Half of these women were living in a large city and half were living in remote, northern communities. Despite geographic location, abused mothers engage in acts and behaviours to not only protect their children from immediate physical violence but also to mitigate the potential emotional harms of exposure to violence and to prevent their children from continuing the violence in their own future relationships. Relying on informal supports, such as family, was especially important for mothers living in northern, remote communities, and is not surprising given the few services available. Professionals must be aware of the range of strategies and approaches that mothers use, including those that do not involve formal systems (i.e. the police or shelter). Focusing on their strengths and protective capacities will help to empower abused mothers and limit unnecessary, inappropriate, or intrusive interventions. Recognising mothers' capacities will also lead to better outcomes for children, who fare best when their mothers are appropriately supported. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Abused mothers engage in acts and behaviours to protect their children from the harms of exposure to violence, and these may differ for mothers living in remote, isolated communities., Mothers' protective acts extend beyond calling the police or going to shelter, and include informal supports., Professionals must inquire about mothers' protective strategies and incorporate into case plans., Professionals must support abused mothers so that they can help strengthen the mother-child relationship and help children recover from violence. [ABSTRACT FROM AUTHOR]

The purpose of this paper is to explore negative peer interactions in foster care. Looked after children and young people have highlighted the impact of negative peer interactions, and especially peer violence and intimidation, on their care experiences. However, to date, no specific fostering research has addressed this important issue. In response to this gap, we undertook focus groups with 32 foster carers in the South West of England. Group discussions were semi-structured based around the issue of negative peer interactions in foster care. The analysis revealed five main associated themes: the impact on the carers' birth children; a lack of placement planning; inadequate referral information; a negative view of social work support; and insufficient external interventions. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Negative peer interactions, particularly violence, were a major concern for foster carers, especially if they negatively impacted on the welfare of carers' birth children., An absence of pre-placement referral information on negative peer interactions was commonly reported and placed all children in the fostering household at risk., Associated social work support and external interventions were often perceived as lacking and inadequate., Fostering procedures, review and decisions need to recognise the impact of peer violence on all members of the fostering household. [ABSTRACT FROM AUTHOR]

The physical health of people diagnosed with a mental illness is significantly poorer in comparison with the general population. Awareness of this health disparity is increasing; however, strategies to address the problem are limited. Carers play an important role in the physical health care of people with mental illness, particularly in facilitating navigation of and advocating in the health care system. A specialist physical health nurse consultant position has been suggested as a way to address the physical health care disparity and limited research available suggests that positive outcomes are possible. In the present study, a qualitative exploratory research project was undertaken, involving in-depth interviews with people identifying as mental health carers. Two focus groups and one individual interview were conducted involving a total of 13 carers. The resulting data were analyzed thematically. Views and opinions about the proposed physical health nurse consultant (PHNC) position were sought during these interviews and are reported in this paper. Two main sub-themes were evident relating to characteristics of this role: reliability and consistency; and communication and support. Essentially carers expressed a need for support for themselves and consumers in addressing physical health concerns. Successful implementation of this position would require a consistent and reliable approach. Carers are significant stakeholders in the physical health of consumers of mental health services and their active involvement in identifying and tailoring services, including development of the physical health nurse consultant must be seen as a priority. [ABSTRACT FROM AUTHOR]

Background This paper reports part of the findings of a study which exposed sexual violence in schools for learners with mild intellectual disability in South Africa. Special attention was paid on factors contributing to such a problem. Methods Data were collected using focus groups and individual interviews with 16 learners with mild intellectual disability at two special schools in South Africa. This was followed by individual interviews with the school nurse and social worker, and an analysis of schools' books of incidents. Results Factors contributing to sexual violence at schools for learners with mild intellectual disability included: (i) peer pressure, (ii) concealment of reported incidents of sexual violence, (iii) unsupervised areas linked to schools and (iv) arranged relationships. Conclusion The following suggestions are put forth: (i) awareness programmes, (ii) sensitization of teachers about the consequences and prevention of sexual violence, (iii) boundaries within which the arranged relationship occurs, (iv) intensification of sexuality education and (v) supervision around the school premises. [ABSTRACT FROM AUTHOR]

Issue addressed Alcohol-related road crashes are a leading cause of the injury burden experienced by Indigenous Australians. Existing drink driving programs are primarily designed for the mainstream population. The 'Hero to Healing' program was specifically developed with Indigenous communities and is underpinned by the Community Reinforcement Approach (CRA). This paper reports on the formative evaluation of the program from delivery in two Far North Queensland communities. Methods Focus groups and semistructured interviews were conducted with drink driver participants (n=17) and other Elders and community members (n=8) after each program. Qualitative content analysis was used to categorise the transcripts. Results The CRA appealed to participants because of its flexible nature and encouragement of rearranging lifestyle factors, without specific focus on alcohol use. Participants readily identified with the social and peer-related risk and protective factors discussed. Cofacilitation of the program with Elders was identified as a key aspect of the program. More in-depth discussion about cannabis and driving, anger management skills and relationship issues are recommended. Conclusions Participants' recognition of content reinforced earlier project results, particularly the use of kinship pressure to motivate younger family members to drink drive. Study findings suggest that the principles of the CRA are useful; however, some amendments to the CRA components and program content were necessary. So what? Treating drink driving in regional and remote Indigenous Australian communities as a community and social issue, rather than an individual phenomenon, is likely to lead to a reduction in the number of road-related injuries Indigenous people experience. [ABSTRACT FROM AUTHOR]

For migrant children, moving to a new country is marked by excitement, anxiety and practical challenges in managing this significant transition. This paper draws upon the concepts of social capital and social networks to examine migrant children's access to services post‐migration. Using data from a qualitative study with Eastern European families in Scotland, we identify a range of cumulative barriers that limit children's access to services and illustrate how their experiences are shaped by ethnicity, social class and place. The study shows that migrant children are often disadvantaged post‐migration and develop their own mechanisms to mitigate the impact of migration on their lives. We argue that migrant children's own social networks are relevant and they need to be analysed through a more individualised approach. [ABSTRACT FROM AUTHOR]

Research has shown that pregnancy and motherhood increase the risk of experiencing intimate partner violence (IPV) — physical, sexual and emotional — in relationships. Much of this research, however, explores this issue in relation to adults and little attention has been given to the experiences of pregnant teenagers or teenage mothers in violent relationships. This paper focuses on three main areas to explore this, disadvantage, sexual negotiations and stigma, and draws upon interviews conducted by the authors with 16 teenage mothers in the UK as part of a wider study about IPV in the relationships of disadvantaged young people. [ABSTRACT FROM AUTHOR]

This paper reports findings about parents' experiences of caring for young people with Autistic Spectrum Conditions (ASCs) moving into adulthood. In‐depth interviews were conducted with 38 parents of young people (15–21 years) with ASCs. Data were analysed thematically. In the perceived absence of service support, parents' acted as ‘care‐coordinators’ and ‘life‐supporters’ for their child as they moved into adulthood. These roles came with little choice, emotional demands and personal restrictions. Being supported was important for parents, but preferences differed regarding what this should look like. Implications for policy are discussed. [ABSTRACT FROM AUTHOR]

Background Welfare for the disabled is becoming an important issue in China and care for people with intellectual disability is challenging because of the inadequacies in formal support and the social service system. Material and Method Based on ethnographic research in two villages in North China, this paper analyses the dilemmas of family care for people with intellectual disability. The essential data is the ethnographic record of three cases. Results Rural families strive to provide care through a set of arrangements and bear tremendous stress in the process. Conclusion Family care for people with intellectual disability in rural China has been increasingly challenged by the forces of labour migration, demographic changes and the ever-growing processes of commoditization. The role of the state has to be strengthened in welfare provision to balance the weakened family care ethos in transforming societies. [ABSTRACT FROM AUTHOR]

Background Very little research has examined the role of parenting in managing behavioural side-effects of cancer treatment. The purpose of this paper was to explore parent perceptions of (a) parenting in the context of childhood cancer; (b) the parenting strategies used in the context of managing child behavioural side-effects of cancer treatment; and (c) the perceived impact that cancer-specific parenting strategies have on child behaviour. Methods Participants were 15 mothers of children aged 2-6 years in the maintenance phase of treatment for acute lymphoblastic leukaemia at the Royal Children's Hospital Children's Cancer Centre, Melbourne, Australia. Mothers participated in a one-on-one semi-structured telephone interview using an interview guide which included questions on parenting in the context of childhood cancer, specifically in relation to behavioural side-effects (problems with behaviour, sleep and eating) and any perceived impact cancer-specific parenting may have on the ill child. Results Many parents reported that following their child's cancer diagnosis, they had to implement a suite of 'new' strategies that 'pre-diagnosis' were used only in moderation, if at all. The most salient theme that emerged was parents' perception that their parenting became more lax since their child's diagnosis. Parents further reported specific parenting strategies for each of the main child behavioural side-effects of cancer treatment. Conclusion Data from the current qualitative exploratory study highlight the role of specific parenting strategies in managing or assisting child behavioural side-effects of cancer treatment. Further quantitative research is needed to more fully examine the association between parenting and child behavioural outcomes in order to develop modifiable approaches to improving child behavioural side-effects in a paediatric oncology context. [ABSTRACT FROM AUTHOR]

Background Migrating nursing labour inadvertently reinforces South Africa's care drain, contributes to a global care crisis and forces us to reconsider migration motivation. This paper highlights issues that complicate psychiatric intellectual disability nursing care and identifies loci for change in an attempt to redress this care challenge. Method An exploratory descriptive-interpretivist method investigated nurses' experiences of psychiatric intellectual disability work. Sixteen free association narrative interviews were collected in 2013. Thematic analysis allowed findings to emerge from the data. Results Findings reflect a number of themes: 'relational interaction', 'care burden', 'system fatigue', 'infantilising dynamic of care' and 'resources for coping'. Conclusion System fatigue contributes more to negative experiences of providing care than direct patient work, and nurses experience more relational reciprocity from patients than from institutional management. Organizations should meet nurses' needs for burnout prevention, afford them impact in implementing institutional controls, and engage in a non-exploitative and non-exclusionary way. [ABSTRACT FROM AUTHOR]

Objective To explore the role of women in fishing industry organisations and communities in promoting best-practice health behaviours among fishers in Australia. Design This paper reports aspects of research that examined how the fishing industry can best support physical health and mental well-being of fishers. The study employed a mixed-methods, multisite case study approach. Data were gathered from face-to-face and phone interactions. Setting Two sites in Victoria and one in Western Australia. Participants Thirty-one male fishers, including commercial licence owners, skippers, deckhands, three female family members, three fishing association representatives, one local government representative, two health care providers, and three regional health planning and funding bodies. Interventions Not applicable. Main outcome measures Not applicable. Results Often unrecognised, women associated with the fishing industry are integral to the promotion of good health for fishers. They are key to identifying health issues (particularly mental health issues) and proposing community-based health and well-being strategies. They often do so by incorporating health information and activities into 'soft entry points' - informal, non-health service mechanisms by which fishers can access health information and health services. Conclusions While not working at the industry coalface, women have a stake, and are key players, in the commercial fishing industry. Their knowledge of, and credibility within, fishing enterprises makes them valuable sources of information about health issues facing the industry and effective strategies to address them. This expertise should be applied in conjunction with industry associations and health providers to achieve better health outcomes for fishers and their families. [ABSTRACT FROM AUTHOR]

Rationale, aims and objectives The shortage of kidney donors and benefits of kidney transplantation make graft success imperative. Medication adherence is critical to prevent the risk of graft rejection. This paper examines how adults are prepared and supported by renal transplant co-ordinators and pharmacists to take their medications as prescribed in kidney transplantation. Methods Renal transplant co-ordinators and pharmacists of all five hospitals offering adult kidney transplantation in Victoria, Australia, were interviewed between November 2013 and February 2014. All data underwent qualitative descriptive analysis. Results Nine renal transplant co-ordinators and six pharmacists were interviewed. Although there was no standardized approach to education or other evidence-based strategies to facilitate medication adherence, there were similarities between sites. These similarities included printed information, pre-transplant education sessions, the use of medication lists and medication administration aids, intensive education in hospital and ensuring an adequate supply of medications post-discharge. Conclusions Renal transplant co-ordinators and pharmacists recognized the importance of early patient education concerning immunosuppressant medication. However, each site had developed their own way of preparing a patient for kidney transplantation and follow-up in the acute hospital setting based on experience and practice. Other non-educational strategies involving behavioural and emotional aspects were less common. Differences in usual care reinforce the necessity for evidence-based health care for best patient outcomes. [ABSTRACT FROM AUTHOR]

The management of consumer-related risk is paramount in a secure forensic mental health facility. However, the consequent risk aversion presents a major barrier to consumers forming sexual relationships in a manner that is open and accepted. Investigation of the views of nurses working in forensic mental health settings on this topic is limited, and even more so for consumers of services. This qualitative exploratory study was undertaken to elicit the views of consumers and nurses about forming sexual relationships within this long-term and secure setting. Individual in-depth interviews were conducted with 12 nurses and 10 consumers. The benefits of, and barriers to, sexual relationships was identified as a major theme, and these findings are the focus of this paper. Nurse responses included the subthemes 'supportive factors' and 'potential dangers', reflecting their qualified support. Consumer responses included the subthemes 'therapeutic', 'feeling normal', 'restrictions and barriers', and 'lack of support and secrecy'. The importance of sexual relationships was clearly articulated, as was the difficulties in forming and maintaining them within the forensic setting. More open discussion about this commonly-avoided issue and the education of nurses and other health professionals is required. [ABSTRACT FROM AUTHOR]

Accessible Summary Pupils with autism were interviewed about their participation in drama classes., Interview approaches were devised so that the pupils could give their views., These approaches used different ways to engage the pupils including widgit symbols, photographs and video., The information the pupils gave was important in building an understanding of what they take away from drama sessions., Summary Pupils with autism (aged 16-18) were interviewed as part of a study examining the participation of individuals with autism in drama education. This paper reflects on the approaches devised to gain views from ten pupils with autism who communicated in different ways. The procedure for gaining views from the pupils is explained, and the views they give are outlined. The pupils were able to identify aspects of drama education that they liked and did not like; share goals of drama education and communicate feelings about drama education. The views are discussed in terms of how they inform understandings of individuals with autism as well as their participation in drama education. Challenges specific to gaining views from a group of pupils with autism are considered and implications for future research presented. [ABSTRACT FROM AUTHOR]

The views and opinions of people who use mental health services are being increasingly acknowledged in relation to rights-based, socially-inclusive, and recovery-oriented care. However, little is known of the experiences of lesbian, gay, bisexual, and transgender ( LGBT) people in this respect. The aim of the present study was to explore the experiences and needs of LGBT people in relation to mental health services. The study was an exploratory design utilizing mixed methods. Both quantitative and qualitative data were collected using a survey instrument ( n = 125) and in-depth semistructured interviews ( n = 20) with a sample of people who had completed the survey. This paper will report on the findings from the interview data. The data were thematically analysed, and the main themes that emerged included accessing services, treatment choices, mental health service experiences, and other supports. The findings inform the discussion, and recommendations are made in terms of future mental health practice, education, and research. [ABSTRACT FROM AUTHOR]

Approaches to self-management traditionally focus upon individual capacity to make behavioural change. In this paper, we use Bourdieu's concepts of habitus and capital to demonstrate the impact of structural inequalities upon chronic illness self-management through exploring findings from 28 semi-structured interviews conducted with people from a lower socioeconomic region of Adelaide, South Australia who have type 2 diabetes. The data suggests that access to capital is a significant barrier to type 2 diabetes self-management. While many participants described having sufficient cultural capital to access and assess health information, they often lacked economic capital and social capital in the form of support networks who promote health. Participants were often involved in social networks in which activities which are contrary to self-management have symbolic value. As a consequence, they entered relationships with health professionals at a disadvantage. We conclude that structural barriers to self-management arising from habitus resulting in the performance of health behaviours rooted in cultural and class background and limited access to capital in the form of economic resources, social networks, health knowledge and prestige may have a negative impact on capacity for type 2 diabetes self-management. [ABSTRACT FROM AUTHOR]

Changes to the educational preparation of the nursing workforce in mental health continue to have profound effects on the availability of sufficient numbers of skilled graduates willing to work in this field. The longevity of the problem has focused attention on possible solutions. Introducing a major stream in mental health nursing in undergraduate Bachelor of Nursing programmes was proposed and supported as a potentially beneficial strategy, adopted by some Australian universities. Despite the promise invested in this strategy, systematic evaluations to determine the effectiveness or otherwise of this approach were not initiated. A qualitative exploratory study was undertaken with Australian universities, which had implemented the major stream, regarding their experiences and observed outcomes. In-depth interviews were conducted with a mental health nurse academic from each university. The barriers to the effectiveness of the major in mental health nursing are the specific focus of this paper. Thematic data analysis revealed three main barriers: clinical placements, lack of support from other academics, and integrated curricula. These barriers substantially limited the effectiveness of this strategy - in some instances, leading to the programme's termination - and must be assertively addressed to maximize the potential of the major in mental health nursing. [ABSTRACT FROM AUTHOR]

While there is some evidence in the literature on the impact of art therapy for consumers, there is comparatively little written on how art that has been created by consumers impacts on those observing the art. This paper reports on a qualitative research study that sought to determine if publically-displayed art created by young consumers impacted on stigma reduction and self-help-seeking behaviours of the observers. The findings derived from the thematic analysis of qualitative interviews suggested that publically-displayed art is a safe medium, through which empathy and understanding towards young people with mental illness can be enhanced, and that the art generates discussion and self-help behaviours for mental illness. These findings highlight how mental health nurses can promote social inclusion and reduce stigma through public mental health initiatives that are an important inclusion in the scope of mental health nursing practice. [ABSTRACT FROM AUTHOR]

The ever-growing number of out-of-home children in Italy over the last decade has urged an assessment of the available care services. Although foster care is spreading rapidly, many young people are still housed in residential facilities. Reflection on residential care quality has intensified at both a national and an international level. This paper presents the results of a study on residential care facilities for children and young people in the region of Northern Italy ( Lombardy). Four dimensions of 'quality' are considered: efficiency, effectiveness, participation in planning and intervention, and empowerment of children and their family relationships. The combined effects of these dimensions are defined as 'relational quality'. The results show that residential care facilities are generally good, while Social Services resources often appear inadequate for interventions aimed at birth families (efficiency). The well-being of children in residential care facilities is high, even if they tend to move from one facility to another, rarely returning to their birth family (effectiveness). The involvement of children and their families at different stages of the care path is limited (participative approach). Finally, the most critical element is the failure to properly involve birth families (empowerment). [ABSTRACT FROM AUTHOR]

Aim To explore the experiences of women from three population groups of immediate skin-to-skin contact ( SSC) with their newborn babies. Method A mixed methods approach was adopted in a phenomenological study to elicit the experiences of English, Pakistani and Bangladeshi women. Audiotaped diaries, semi-structured interviews, photographs and video recordings were employed. Concept mapping was central to data analysis. Results This paper reports novel findings that women contextualized and accepted secretions and bodily fluids from birth. This contradicts the beliefs of midwives that Asian women find bodily secretions abhorrent and culturally unacceptable. All participants reported positive experiences of SSC despite varying degrees of soiling from birth fluids. Limitations The study was conducted in a single setting, and participants may not have been representative of others in their cultural groups. Third-party translation may have added an unsought layer of interpretation. The imposition of cultural expectations by peers in the recruitment process excluded some potential participants. Conclusion Stereotypical assumptions about cultural background often characterize professional responses. When this stereotyping was put aside, women of all three cultures, whether breastfeeding or bottle-feeding, were able to enjoy SSC with their babies. Implications for Nursing and Health Policy The findings suggest that changes will be needed in professional practice to be more open to women's expressed preferences, in local policy to ensure that choices are made clear and are available, and in national strategic direction to ensure widespread adoption of positive practices for opportunities to increase breastfeeding, promote parent-child bonding and support patient choice to be realized. [ABSTRACT FROM AUTHOR]

The present study explores the journeys towards full citizenship for those using mental health services as they lobbied to be included as full citizens with the same rights and responsibilities as others in society. Qualitative data were collected through semistructured interviews with 17 service users, five government representatives, and seven registered mental health nurses. A conceptual framework of citizenship containing four domains - the extent, content, depth and acts of citizenship - was used to analyse the data. This paper reports the findings from the service users' data in the first domain, the extent of citizenship, defined as the rules and norms of inclusion and exclusion. The degree to which the service user participants were accepted as full citizens with the same civil, political, and social rights as others was contingent on their ability to adopt their society's rules and norms and appear as 'normal' citizens. Participants often experienced being 'othered' and excluded from the many rights and responsibilities of citizenship due to society's perception that service users lack certain attributes of normal, productive citizens. Participants reported that being labelled with a mental illness led to them being marginalized and ostracized, thus placing conditions and barriers on their citizenship status. Findings show that in response to experiencing conditional citizenship, participants shaped their behaviour to assimilate with other citizens. As well, they engaged in practices of inclusion to challenge and broaden the social rules and norms in order to be accepted without disavowing their differences. [ABSTRACT FROM AUTHOR]