Parents' experiences of their children's presence in discussions with physicians about leukemia

OBJECTIVE: We aimed to examine parents' views regarding their preadolescent child's presence during discussions about serious illnesses. METHODS: In-depth qualitative interviews with parents of children receiving treatment for acute lymphoblastic leukemia were conducted. Parents were sampled from 6 UK treatment centers. Analysis was informed by the constant comparative method and content analysis. RESULTS: We report on interviews with 53 parents (33 mothers, 20 fathers). Parents acknowledged the benefits of communicating openly with children, but few thought that their child's presence in discussions was straightforwardly desirable. They described how their child's presence restricted their own communication with physicians, made concentrating difficult, and interfered with their efforts to care for their child emotionally. Children's presence was particularly difficult when significant issues were being discussed, including prognoses, adverse results, and certain medical procedures. Parents felt that such discussions posed a potential threat to their child, particularly when they had not first had an opportunity to discuss information with the physician separately from the child. In contrast, separate meetings enabled parents to absorb information and to convey it to their child at an appropriate time and in a reassuring way. Some parents experienced difficulties in accessing separate meetings with physicians. CONCLUSIONS: The difficulties parents described could potentially be addressed by extending, beyond the diagnosis period, the practice of sequencing significant information so that it is communicated to parents in separate meetings before being communicated to the child and by periodically exploring with parents what information would be in each child's interests.

Cognitive behaviour therapy (CBT) for depression by computer vs. therapist: patient experiences and therapeutic processes

This case series compares patient experiences and therapeutic processes between two modalities of cognitive behaviour therapy (CBT) for depression: computerized CBT (cCBT) and therapist-delivered CBT (tCBT). In a mixed-methods repeated-measures case series, six participants were offered cCBT and tCBT in sequence, with the order of delivery randomized across participants. Questionnaires about patient experiences were administered after each session and a semi-structured interview was completed with each participant at the end of each therapy modality. Therapy expectations, patient experiences and session impact ratings in this study generally favoured tCBT. Participants typically experienced cCBT sessions as less meaningful, less positive and less helpful compared to tCBT sessions in terms of developing understanding, facilitating problem-solving and building a therapeutic relationship.

Allocating community-level payments for ecosystem services initial experiences from a REDD pilot in Tanzania

Payments for ecosystem services (PES) typically reward landowners for managing their land to provide ecosystem services that would not otherwise be provided. REDD—Reduced Emissions from Deforestation and Forest Degradation—is a form of PES aimed at decreasing carbon emissions from forest conversion and extraction in lower-income countries. A key challenge for REDD occurs when it is implemented at the community rather than the individual landowner level. Whilst achieving this community-level reduction relies on individuals changing their interaction with the forest, incentives are not aligned explicitly at the individual level. Rather, payments are made to the community as a single entity in exchange for verified reduced forest loss, as per a PES scheme. In this paper, we explore how community level REDD has been implemented in one multiple-village pilot in Tanzania. Our findings suggest that considerable attention has been paid to monitoring, reporting, verification, and equity. Though no explicit mechanism ensures individual compliance with the group PES, the development of village level institutions, “social fencing,” and a shared future through equal REDD payments factor into community decisions that influence the level of community compliance that the program will eventually achieve. However, few villages allocate funds for explicit enforcement efforts to protect the forest from illegal activities undertaken by outsiders.

Gender diversity and board performance: women's experiences and perspectives

Despite considerable progress that organizations have made during the past 20 years to increase the representation of women at board level, they still hold few board seats. Drawing on a qualitative study involving 30 companies with women directors in the United Kingdom, the United States, and Ghana, we investigate how the relationship between gender in the boardroom and corporate governance operates. The fi ndings indicate that the presence of a minority of women on the board has an insignifi cant effect on board performance. Yet the chairperson’s role is vital in leading the change for recruiting and evaluating candidates and their commitment to the board with diversity and governance in mind. Our study also sheds light on the multifaceted reasons why women directors appear to be resisting the discourse of gender quotas.

Caught in the eye of the storm: a qualitative study of views and experiences of planned drug holidays from methylphenidate in child and adolescent ADHD treatment

Background: Attention deficit hyperactivity disorder (ADHD) can be treated with stimulant medication such as methylphenidate. Although effective, methylphenidate can cause serious side-effects, including suppressed appetite, growth retardation and sleep problems. A drug holiday is a deliberate interruption of pharmacotherapy for a defined period of time and for a specific clinical purpose, for example for appeasing side-effects. Whilst some international guidelines recommend introducing drug holidays in ADHD treatment, this is not practised routinely. Our aim was to examine the views and experiences of planned drug holidays from methylphenidate with adults who have responsibility for treatment decisions in children and adolescents with ADHD. Method: In-depth interviews were carried out. Child and Adolescent Mental Health Services (CAMHS) practitioners (n=8), General Practitioners (n=8), teachers (n=5), and mothers of children with ADHD (n=4) were interviewed in a UK setting. Interview transcripts were analysed using grounded theory. Results: Methylphenidate eases the experience of the child amid problems at home and at school and once started is mostly continued long-term. Some families do practise short-term drug holidays at weekends and longer-term ones during school holidays. The decision to introduce drug holidays is influenced by the child’s academic progress, the parents’ ability to cope with the child, as well as medication beliefs. Trialling a drug holiday is thought to allow older children to self-assess their ability to manage without medication when they show signs of wanting to discontinue treatment prematurely. Conclusions: Planned drug holidays could address premature treatment cessation by enabling adolescents to assess repercussions under medical supervision.

"When I go to bed hungry and sleep, I'm not hungry": children and parents' experiences of food insecurity

Evidence demonstrates food insecurity has a detrimental impact on a range of outcomes for children, but little research has been conducted in the UK, and children have rarely been asked to describe their experiences directly. We examined the experiences of food insecure families living in South London. Our mixed-methods approach comprised a survey of parents (n = 72) and one-to-one semi-structured interviews with children aged 5-11 years (n = 19). The majority of parents (86%) described their food security during the preceding year as very low. Most reported they had often or sometimes had insufficient food, and almost all had worried about running out of food. Two thirds of parents had gone hungry. Most parents reported they had been unable to afford a nutritionally balanced diet for their children, and just under half reported that their children had gone hungry. Four themes emerged from the interviews with children: sources of food; security of food, nutritional quality of food, and experiences of hunger. Children's descriptions of insufficient food being available indicate that parents are not always able to shield them from the impact of food insecurity. The lack of school-meals and after-school clubs serving food made weekends particularly problematic for some children. A notable consequence of food insecurity appears to be reliance on low-cost takeaway food, likely to be nutritionally poor.

Automatically linking live experiences captured with a ubiquitous infrastructure

Ubiquitous computing aims at providing services to users in everyday environments such as the home. One research theme in this area is that of building capture and access applications which support information to be recorded ( captured) during a live experience toward automatically producing documents for review (accessed). The recording demands instrumented environments with devices such as microphones, cameras, sensors and electronic whiteboards. Since each experience is usually related to many others ( e. g. several meetings of a project), there is a demand for mechanisms supporting the automatic linking among documents relative to different experiences. In this paper we present original results relative to the integration of our previous efforts in the Infrastructure for Capturing, Accessing, Linking, Storing and Presenting information (CALiSP). Ubiquitous computing aims at providing services to users in everyday environments such as the home. One research theme in this area is that of building capture and access applications which support information to be recorded (captured) during a live experience toward automatically producing documents for review (accessed). The recording demands instrumented environments with devices such as microphones, cameras, sensors and electronic whiteboards. Since each experience is usually related to many others (e.g. several meetings of a project), there is a demand for mechanisms supporting the automatic linking among documents relative to different experiences. In this paper we present original results relative to the integration of our previous efforts in the Infrastructure for Capturing, Accessing, Linking, Storing and Presenting information (CALiSP).

We did it together : Fathers´ experiences of planned home birth in the Nordic countries

Sammanfattning: Bakgrund: för många pappor kan det vara en av livets största och bästa stund att närvara vid när deras barn föds. Det finns studier som beskriver pappors upplevelse av sjukhusförlossning, däremot finns det få studier som beskriver pappors upplevelse av planerad hemförlossning. Syftet med den här studien är att beskriva pappans upplevelser och erfarenheter av planerad hemförlossning. Metod: i denna studie medverkar 105 pappor från de nordiska länderna som har deltagit i planerad hemförlossning mellan 2009-2011. Materialet från en öppen enkätfråga analyserades med hjälp av deduktiv ansats. Den öppna frågan löd ”beskriv gärna förlossningen med egna ord”. Resultat: papporna upplevde den planerade hemförlossningen som lugn och säker, mycket tack vare den professionella barnmorskan och den välbekanta miljön. Att få vara hemma med sin partner och om så önskades, sin familj var högt skattat. Födelseprocessen hemma beskrevs av papporna som att ”vi gjorde det tillsammans” och ”det var vår egen förlossning”. Papporna uttryckte delaktighet i förlossningsflödet. De kände också att de fick ett barn och var en del av en vacker förlossning full av kärlek. Konklusion: att välkomna ett barn hemma i en lugn miljö där paret känner sig trygga och ostörda, kan underlätta en positiv och meningsfull förlossningsupplevelse.

Translation, Communication and 'Learning' : Experiences from teaching a master program in Viet Nam

In Vietnam, as in other Asian countries, co-operation with foreign universities plays an important role for the development of higher education. This paper is based on personal experiences from teaching a Swedish Master Programme in Education Science at Vietnam National University in Hanoi. Using theories developed by Lev Vygotsky and Donald Schon, the programme is explored as an inter-cultural learning process. Three aspects are focused upon. Firstly, the fact that communication between students and teachers is conducted with the help of translators who support both teachers and students in their attempt to understand and make themselves understood. Secondly, the expressed need to connect the ideas and techniques which are studied in the programme to the students´ professional worlds. Thirdly, the need to construct a framework wherein the students can inquire into their own situations and to encourage them to try new and more productive ways to deal with problems they are confronted with.