Nima Moghaddam

After you: conversations between patients and healthcare professionals in planning for end of life care

BackgroundThis study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients’ preferences for place of care (and death) were facilitated and documented.MethodsThe study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (N = 18; 10 men; 8 women; median age 75); nominated relatives (N = 11; 7 women; 4 men; median age 65) and healthcare professionals (N = 15) caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives) and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives) within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study.ResultsPatients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions.ConclusionsThis study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to develop interventions to help initiate conversations to develop person centred plans to manage the end of life.

Service user experiences of information delivery after a diagnosis of cancer: a qualitative study

Goals of workThis paper presents findings from a qualitative study investigating service users’ experiences of a patient information pathway after a diagnosis of cancer.Materials and methodsPatients (27) and relatives (20) were recruited from two identified Cancer Network sites representing a pathway that had been information mapped (Lung) and one which had not (Head and Neck). Respondents participated in up to three qualitative interviews in the year after diagnosis.Main resultsThe need for information in response to serious health problems has become widely accepted. Providing cancer patients and their carers with high-quality information throughout their care pathway is a policy priority. However, the study findings contribute to a growing body of evidence that far from embracing the active role of “expert patient”, many patients continue to prefer verbal to written information, to trust in health professionals as their primary and preferred source of information, and to be quite cautious and selective about what they want to know about their illness.ConclusionsGood information is regarded as a prerequisite for informed decision making and a primary means of coping with the stress of illness. However, patient attitudes to information are complex and encompass resistance, ambivalence and indifference, active engagement and interest. The study findings reinforce the need for health professionals to develop competence as skilled communicators, and for efficient local systems of information transfer between service agencies and health professionals as prerequisites for delivery of the timely, tailored and personalized information which patients require.

Anxiety and avoidance in psychogenic nonepileptic seizures: the role of implicit and explicit anxiety

This study examined implicit and explicit anxiety in individuals with epilepsy and psychogenic nonepileptic seizures (PNESs) and explored whether these constructs were related to experiential avoidance and seizure frequency. Based on recent psychological models of PNESs, it was hypothesized that nonepileptic seizures would be associated with implicit and explicit anxiety and experiential avoidance. Explicit anxiety was measured by the State-Trait Anxiety Inventory; implicit anxiety was measured by an Implicit Relational Assessment Procedure; and experiential avoidance was measured with the Multidimensional Experiential Avoidance Questionnaire. Although both groups with epilepsy and PNESs scored similarly on implicit measures of anxiety, significant implicit-explicit anxiety discrepancies were only identified in patients with PNESs (p<.001). In the group with PNESs (but not in the group with epilepsy), explicit anxiety correlated with experiential avoidance (r=.63, p<.01) and frequency of seizures (r=.67, p<.01); implicit anxiety correlated with frequency of seizures only (r=.56, p<.01). Our findings demonstrate the role of implicit anxiety in PNESs and provide additional support for the contribution of explicit anxiety and experiential avoidance to this disorder.

Parental bonding and eating disorders: A systematic review

This article systematically reviewed studies of parental bonding in people with eating disorders. MEDLINE, PsychINFO, EMBASE and CINAHL were searched to identify studies that compared parental bonding in people diagnosed with an eating disorder relative to non-clinical controls. Twenty-four studies were identified. Women with eating disorders typically reported lower parental care and higher parental protection compared to non-clinical, but not psychiatric, controls. Interestingly, a modest number of studies found that these relationships were mediated by avoidant problem solving style and several schemas from the Young Schema Questionnaire (YSQ; Schmidt, Joiner, Young, & Telch, 1995). While there are methodological limitations associated with the reviewed studies, they do offer some support for the proposal that difficulties in parent-child relationships predispose women to eating disorders and other psychiatric diagnoses.

Feedback of trial results to participants: a survey of clinicians' and patients' attitudes and experiences.

Purpose There is growing interest in the provision of trial results to trial participants. However, there are a number of gaps in the research base relating to the closure of clinical trials and feedback of results to participants. Methods The aim of this research was to explore the practice of feeding back trial results to trial participants and to identify best practice in this area. Postal questionnaires were sent to members of the UK National Cancer Research Institute Clinical Studies Groups (NCRI CSG) and to patients over the age of 18 years who completed trial treatment (located in one Cancer Network) during a 16-month period (April 07–July 08). Results 145 NCRI CSG member surveys and 81 patient questionnaires were returned. The vast majority of all respondents supported the idea of offering results to trial participants. However, NCRI members and trial participants differed in their opinions about the timing and method for the provision of results. Conclusion The results provide an insight into the views of these groups in relation to desire for results and practical aspects of results feedback which should inform further investigations into trial management and the practice of feedback of trial results.

Exploring patients’ experience of receiving information about cancer: A comparison of interview and questionnaire methods of data collection

Patient information is widely regarded both as a resource and an entitlement: a means of ‘empowering’ patients to behave as ‘consumers’ of health care. Patient ‘satisfaction’ has come to be regarded as an important outcome of care. This article presents qualitative interview data regarding the experience of patient information provision and the results of a self-completed Information Satisfaction Questionnaire (ISQ) among patients and relatives affected by cancer. It considers the implications of the differences between these for service evaluation and current policy implementation promoting patients as informed and expert consumers of health care. The study findings contribute to growing evidence that the high rate of patients’ expressed satisfaction with different aspects of service provision as indicated by structured questionnaire responses is largely an artefact of the method of data collection. Accounts of negative experiences were common, but did not translate into expressed criticism or overt dissatisfaction. It is important that the limitations of such surveys are contextualized in relation to qualitative findings such as those of the present study. Especially in the face of serious and life-threatening illness, professional constructs such as ‘information delivery’, ‘satisfaction’ and ‘shared decision making’ have little resonance for many patients, who prefer to trust in professional expertise and to eschew the acquisition of specialist knowledge and active involvement in decisions about health care.

The Efficacy of Cognitive Behavioral Therapy for Adults With ADHD: A Systematic Review and Meta-Analysis of Randomized Controlled Trials.

Objective: To systematically review the literature on published randomized controlled trials (RCTs) of cognitive behavioral therapy (CBT) for adult ADHD and to establish the effectiveness of CBT in reducing ADHD symptoms. Method: A systematic review of nine RCTs and two subsequent meta-analyses of eight of the studies were conducted. Results: Just nine studies were identified, of generally good quality but with some limitations. Four trials (total N = 160) compared CBT with waiting list controls, and three trials (total N = 191) compared CBT with appropriate active control groups. Meta-analyses showed that CBT was superior to waiting list with a moderate to large effect size (standardized mean difference [SMD] = 0.76, 95% confidence interval [CI] [0.21, 1.31], p = .006) and superior to active control groups with a small to moderate effect size (SMD = 0.43, 95% CI [0.14, 0.71], p = .004). Conclusion: These results give support to the efficacy of CBT in reducing symptoms of ADHD post-intervention.

Fantasy-Driven Versus Contact-Driven Users of Child Sexual Exploitation Material: Offender Classification and Implications for Their Risk Assessment.

Since the advent of the Internet, convictions for the possession, display, trading, and distribution of child sexual exploitation material (CSEM) have risen steadily, but little is known about their appropriate assessment and treatment, especially concerning their risk of reoffending. It has been suggested that a conceptual distinction of fantasy- versus contact-driven CSEM users might be of merit. Sixty-eight offenders recruited from sex offender treatment providers were assessed via an anonymous computer survey including a variety of clinical and risk-related variables; the findings showed differences in the psychological profiles between CSEM users and contact child sex offenders. Numerical and spatial methods of data analysis were used to identify subgroups of CSEM users; these confirmed the twofold distinction of fantasy- versus contact-driven offending. The spatial representation of participants identified three dimensions as crucial in the classification of these subgroups: direct sexual contact with a minor, possession of fantasy-generating material, and social contact with other users with a sexual interest in minors; potentially differentiating distinct offender subgroups with different risks and needs. The current study informed the development of an empirical model of CSEM users that could aid in the assessment of risk of reoffending and cross-over to contact sex offending.

What are the factors that influence parental stress when caring for a child with an intellectual disability? A critical literature review

Abstract Objectives: This article critically reviewed empirical studies identifying factors that may influence parental stress when caring for a child with an intellectual disability. Understanding the factors influencing parental stress is important for several reasons, which include improving parental/child quality of life, supporting parental needs, and thus reducing potential economic burden in the long term. This review is also imperative for ensuring high quality research within this field. Methods: AMED, CINAHL Plus (EBSCOhost), EMBASE, Medline and PsycINFO were accessed to conduct a critical literature review. A total of 17 articles were reviewed. A bespoke quality assessment tool was developed to examine the susceptibility to bias for each of the included studies. Results: The review outlined a range of child, parent and socio-environmental factors that may influence parental stress. More specifically, factors associated with greater parental stress included child behavioral difficulties (e.g. challenging behavior), ineffective parental coping strategies (including avoidance and self-blame), and poor family environment (e.g. lack of cohesion amongst family members). These factors are critically discussed alongside contrasting evidence that was illuminated within this review. Conclusions: Parents of a child with an intellectual disability are not a homogenous group and are likely to show variability in the factors that affect their stress levels. Future clinical and research implications are proposed in light of the methodological limitations identified within the studies reviewed. For example, future research could investigate the bi-directional effects that occur between variables; how specific factors influence parental stress; and potential mediating/moderating factors of parenting stress.

What do we know about the application of the Mental Capacity Act (2005) in healthcare practice regarding decision-making for frail and older people? A systematic literature review.

In England and Wales, decision-making in cases of uncertain mental capacity is regulated by the Mental Capacity Act 2005. The Act provides a legal framework for decision-making for adults (16 and over) who are shown to lack capacity and where best interest decisions need to be made on their behalf. Frail older people with cognitive impairments represent a growing demographic sector across England and Wales for whom the protective principles of the Act have great relevance, as they become increasingly dependent on the care of others. However, while the Act articulates core principles, applying the Act in everyday healthcare contexts raises challenges for care providers in terms of interpretation and application. This paper presents a review of the published evidence documenting the use of the Act in healthcare practice, with particular reference to frail older people. Our aim was to identify, review and critically evaluate published empirical studies concerned with the implementation and application of the Act in healthcare settings. A systematic approach was undertaken with pre-determined exclusion and inclusion criteria applied across five electronic bibliographic databases combined with a manual search of specific journals. This review reports on 38 empirical sources which met the inclusion criteria published between 2005 and 2013. From the 38 sources, three descriptive themes were identified: knowledge and understanding, implementation and tensions in applying the Act, and alternative perspectives of the Act. There is a need for improved knowledge and conceptualisation to enable successful incorporation of the Act into everyday care provision. Inconsistencies in the application of the Act are apparent across a variety of care settings. This review suggest staff need more opportunities to engage, learn and implement the Act, in order for it to have greater resonance to their individual practice and ultimately benefit patient care.