Psychological Care for People with Inflammatory Bowel Diseases: Exploring Consumers' Perspectives to Inform Future Service Co-design.

BACKGROUND: There is a need to improve psychological care for people with Inflammatory Bowel Diseases (IBD), noting the high psychosocial burden of disease. AIMS: This study qualitatively explored the views of people living with IBD to help inform future co-design of services that better meet the psychological needs of consumers. METHODS: Adults with IBD were recruited to attend virtual focus groups to discuss what they want most in an IBD-specific psychological service. The discussions were recorded and transcribed, and data were analyzed using conventional qualitative content analysis. Draft results were summarized midway and reviewed by remaining focus groups and a final expert consumer. A quantitative dataset was created of comment frequencies. RESULTS: Thirty-one participants took part in the study: 10 focus groups were held with an average of three participants per group. The analysis identified 254 codes, 38 sub-categories and six categories. Five main categories were identified for an IBD-specific psychological service: People-Centered Healthcare (commented on by 90% of participants), Education and Preparation (83%), Social Connection (83%), Psychological Input (93%), and Accessible Services (97%). Results were summarized in a set of proposed clinical guidelines. CONCLUSIONS: The findings of this study identify important insights from people living with IBD regarding priorities for psychological services. IBD services should focus on improving education, addressing social connection, and integrating psychological input, as well as becoming more people-centered and accessible. It is hoped that IBD services consult the proposed clinical guidelines to inform co-designed service improvements.

Views of admitted palliative care patients and their clinicians on corneal donation discussions: a qualitative content analysis of semi-structured interviews.

BACKGROUND: There is a severe shortage of corneas for donation, globally, for transplantation and research purposes. One group of individuals who could potentially be donors are those who die within the inpatient palliative care unit. The aim of the study was to understand clinician and patient perceptions of corneal donations and discussion of donation in palliative care units. METHODS: A qualitative design was utilised with data collected through semi-structured interviews and analysed using qualitative content analysis. A total of 46 interviews were undertaken involving inpatient palliative care unit patients (19) and clinicians (27) in three major inpatient palliative care units in South Australia. RESULTS: Very few patient participants reported being asked about corneal donations during their time in palliative care. Most inpatient palliative care unit clinicians did not raise the topic as they felt other areas of care took precedence. Inpatient palliative care unit patients thought if inpatient palliative care unit clinicians did not raise the topic, then it was not important. There were some differences between patient and clinician views, such as preference about who raises the possibility of donation and when the discussion might occur. CONCLUSIONS: Findings suggest that patients are receptive to discussing corneal donations, but clinicians are not initiating these. This is a missed opportunity for donors and potential recipients. We recommend that clinicians routinely discuss eye donation as part of palliative care.

Patient Information Needs and Decision-Making Before a Cardiac Implantable Electronic Device: A Qualitative Study Utilizing Social Media Data.

The decision to receive a cardiac implantable electronic device (CIED) represents a challenging experience for patients. However, the majority of previous research has only considered retrospective accounts of patient experiences. This study aimed to use social media data to characterize the information sought by people anticipating or considering CIED implantation and factors that influence their decision-making experiences. A Python-based script was used to collect posts made to a community intended for discussions concerning CIEDs on the social media platform Reddit. Reflexive content analysis was used to analyze the collected data. From 799 posts collected, 101 made by 86 participants were analyzed. The reported median (range) age of participants was 34 (16-67), and most were anticipating or considering a pacemaker. Three overarching categories classified the data: "Use of social media to meet informational and other needs"; "Factors influencing acceptance of the need for implantation"; and "Specific concerns considered during decision-making." Participants anticipating or considering a CIED predominantly sought experiential information. Among asymptomatic participants, doubts were prevalent, with acceptance being an influential factor in decision-making. Healthcare professionals should recognize the informational and emotional needs of prospective CIED patients and tailor support mechanisms to better facilitate their decision-making.

Identifying the active content of interventions targeting the psychological well-being of carers of people with motor neuron disease: A systematic review.

OBJECTIVES: The primary aim of this research was to use a taxonomy of behavior change techniques (BCTTv1) to identify, map, and describe the active components of intervention and comparator groups in studies evaluating the psychological well-being (PWB) of motor neuron disease (MND) carers. Secondary aims were to (a) identify absent active ingredients and (b) explore whether variability in the effectiveness of interventions targeting the PWB of MND carers could be better explained through improved characterization of the active content of these interventions. METHODS: Mixed-methods systematic review based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Content-coding of interventions targeting the PWB of MND carers using BCTTv1 was conducted. RESULTS: Sixteen manuscripts describing 14 studies were included. Forty-one of the possible 93 behavior change techniques (BCTs, 44%) were identified as active ingredients, while 52 BCTs (56%) were absent. BCTs were identified in all 14 intervention groups and 4 control groups. Four of the 16 overall BCTTv1 categories were absent. Eleven of the 14 studies demonstrated PWB benefits from their interventions. SIGNIFICANCE OF RESULTS: Identified and absent BCTs and BCTTv1 categories were mapped for all study groups, enabling a transparent characterization of active intervention content associated with positive PWB outcomes. Directions to improve interventions in this nascent field of research included the investigation of relevant untested BCTs in this population and the management of reporting and methodological quality issues.

Psychological service provision in Australian Palliative Care Services.

OBJECTIVES: Psychological distress is common among palliative care patients. Despite this, little is known about the availability of psychological services to support palliative care patients within Australia. This study aimed to determine the level of psychological support services available within Australian Palliative Care Services. The study was based on a similar study in Australia by Crawford in 1999, allowing differences over time to be examined. METHODS: A 12-item online survey was distributed to adult Palliative Care Services throughout Australia from November 2021 to January 2022. Quantitative and qualitative analysis of responses was conducted, with comparisons made with the 1999 study using a 2-proportions z-test. RESULTS: Social workers were the most available professionals delivering psychological care (prevalence of 94.1%), followed by spiritual care workers (62.5%), creative therapists (43.8%), counselors (36.4%), psychiatrists (31.3%), complementary therapists (28.1%), and psychologists (25.0%). Nearly 60% of services had no access to a psychiatrist or a psychologist. The proportion of Palliative Care Services that had access to a psychiatrist, psychologist, or counselor was significantly less in 2021/22 compared to 1999, with differences of 29.4% (p = 0.002), 23.4% (p = 0.015), and 26.1% (p = 0.006), respectively. SIGNIFICANCE OF RESULTS: Lack of access to psychiatrists, psychologists, and counselors in Australian Palliative Care Services remains a significant issue and has become more prevalent since 1999. Ongoing advocacy and increased government funding to enable psychological health professionals to be readily employed in Palliative Care Services is vital.

How Can Nurses Support Patients on Hemodialysis Who Experience Needle Fear? An Online Educational Intervention for Nephrology Nurses.

Nephrology nurses struggle to support patients on hemodialysis who experience needle fear due to absence of adequate programs or guidelines. Therefore, we have designed an educational intervention for nurses to learn techniques and strategies to support patients with needle fear and review best cannulation practices with minimal trauma to improve patients' experience of dialysis. A pre-post design measured self-reported confidence in nurses' ability to support patients on dialysis who have a fear of needles. We found nurses can benefit from targeted educational interventions that provide information and strategies regarding needle fear management. Findings from this study have a potential to be transferred to other chronic disease settings with frequent needle use.

'It's Not Really a Part of Standard Practice': Institutional Silencing of Sexuality Within Australian Mental Health Settings.

Research seeking to understand and improve sexuality-related practice in mental health settings has paid little attention to the institutional context in which clinicians' practice is embedded. Through a social constructionist lens, we used thematic analysis to examine how 22 Australian mental health clinicians implicated the wider institutional context when discussing and making sense of sexuality-related silence within their work. Interviews were part of a study exploring participants' perceptions of sexuality and sexual health in their work more generally. Broader silences that shaped and reinforced participants' perceptions and practice choices were situated in professional education; workplace cultures; and the tools, procedures and policies that directed clinical practice. We argue that sexuality-related silence in mental health settings is located in the institutional context in which clinicians learn and work, and discuss how orienting to this broader context will benefit research and interventions to improve sexuality-related practice across health settings.

People Living with Inflammatory Bowel Disease Want Multidisciplinary Healthcare: A Qualitative Content Analysis.

This study reports on the preferences of people with inflammatory bowel disease (IBD) for their healthcare. Overall, 477 people with IBD responded to an open-ended survey question within a larger study. We qualitatively content-analysed these responses with open coding using NVivo. Respondents expressed a desire for (1) better communication, (2) multidisciplinary care, (3) better treatment, services and specialist care, (4) whole person care, (5) health promotion, (6) proactive healthcare, (7) fewer administrative issues and (8) improved hospital experience. Patients with IBD want patient-centred, multidisciplinary care. Healthcare professionals should facilitate patients' access to proactive care.

Interventions targeting psychological well-being for motor neuron disease carers: A systematic review.

OBJECTIVES: This systematic review considers interventions designed to improve the psychological well-being (PWB) of carers of people with motor neuron disease (MND) using quantitative, qualitative, or mixed-methods studies, and aimed to (1) summarize current research, (2) assess the quality of evidence, and (3) evaluate the effectiveness of interventions. METHOD: Mixed-methods systematic review (MMSR) was conducted based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. RESULTS: Thirteen papers met the inclusion criteria, including 12 studies (six mixed-methods, four quantitative, and two qualitative). Four studies described randomized controlled trials, seven detailed uncontrolled longitudinal studies with a single treatment group and a pre-post design, and one was an observational survey. Critical appraisal of the studies revealed a wide range of weaknesses in the quantitative and/or qualitative methodologies. Due to the heterogeneity of interventions, outcomes, and measurements, a narrative and convergent approach to data synthesis was employed. While a minority of studies demonstrated some benefits to hedonic and eudaimonic aspects of PWB, the interpretability of these data was limited by methodological problems. SIGNIFICANCE OF RESULTS: This MMSR highlighted a paucity of quality research regarding interventions for the PWB of MND carers. Although some benefits to PWB were demonstrated, most studies suffered from substantial methodological problems, rendering the overall evidence base low. High-quality and carefully designed studies are a priority to enable effective development and testing of much-needed interventions targeting the PWB for MND carers.

Integrated Psychological Care Reduces Health Care Costs at a Hospital-Based Inflammatory Bowel Disease Service.

BACKGROUND & AIMS: Inflammatory bowel diseases (IBD) are associated with high psychosocial burden and economic cost. Integrating psychological care into routine management might lead to savings. We performed a 2-year investigation of the effects of integrated psychological care in reducing healthcare use and costs. METHODS: We performed a prospective study of 335 adult patients treated at a hospital-based IBD service in Australia. Participants were recruited between September 2015 and August 2016 and completed screening instruments to evaluate mental health and quality of life. Data on healthcare use and costs for the previous 12 months were also collected. Patients found to be at risk for mental health issues were offered psychological intervention. Patients were followed up 12 months after screening (between September 2016 and August 2017). RESULTS: A significantly higher proportion of subjects at risk for mental health issues had presented to an emergency department in the 12 months before screening (51/182; 28%) compared to psychologically healthy subjects (28/152; 18%; X2(1) = 4.23; P = .040). Higher levels of depression and general distress (but not anxiety) were related to increased odds of hospital admission (adjusted odds ratios, 1.07 and 1.05, respectively). Among the patients who accepted psychological intervention, the number who presented to emergency departments was reduced significantly in the 12 months after screening (follow-up) compared to the 12 months before screening (P = .047), resulting in a cost saving of AU$30,140 ($20,816 USD). A cost-benefit analysis of the integrated psychological care model revealed a net saving of AU$84,905 ($58,647 USD) over a 2-year period. CONCLUSIONS: Risk for mental health issues is associated with higher healthcare costs in people with IBD. Providing integrated psychological care to individuals at risk for mental health issues can reduce costs, particularly by decreasing visits to emergency departments. Further studies are required to determine the best care to provide to reduce costs.

Work and SCI: a pilot randomized controlled study of an online resource for job-seekers with spinal cord dysfunction.

STUDY DESIGN: A prospective, parallel randomized controlled trial (RCT). OBJECTIVES: To test the preliminary effects of an online resource targeted to job-seekers with spinal cord injury or disorder (SCI/D), and to determine the feasibility of proceeding to a full-scale RCT. SETTING: A community cohort in Australia. METHODS: Forty-eight adults (M = 42 years, SD = 10.95, 27 males) were randomized to receive 4-weeks access to the Work and SCI resource (n = 25) or to a wait-list control group (n = 23). The Work and SCI intervention involved six stand-alone learning modules which provided job-searching and career-planning information through text, videos, and interactive activities. Self-report measures were administered at baseline and after 4 weeks: Job Procurement Self-Efficacy Scale (JSES), Life Orientation Test-Revised (LOT-R), and Patient Health Questionnaire-9 (PHQ-9). RESULTS: Online usage data identified high uptake of the Work and SCI resource, although study attrition was problematic. Intention-to-treat analyses failed to reach statistical significance, whereas complete data revealed a significant interaction effect for optimism (LOT-R). CONCLUSION: Further research to develop and enhance Work and SCI is indicated. Remediable strategies to optimize recruitment and statistical power in a future definitive RCT are discussed. SPONSORSHIP: This project was funded by the auDA Foundation (project 16019).

Neutralising the meat paradox: Cognitive dissonance, gender, and eating animals.

Meat eating is a common behaviour, despite many people claiming to like, love, and care about animals. The apparent disconnection between not wanting animals to suffer, yet killing them for food, has been termed the 'meat paradox.' In this experimental study (N = 460), participants completed pre-affect, post-affect, meat attachment, and attitude towards animals questionnaires, under two conditions: exposure to the life of an Australian meat lamb, and information about the nutritional benefits of meat. A factorial MANOVA revealed that negative affect was significantly greater when participants were exposed to the meat-animal connection; however, more entrenched attitudes towards animals and attachment to meat remained unaffected. Significant gender effects were found across all variables: most notably, meat attachment differed according to gender, decreasing in women and increasing in men when exposed to the meat-animal condition. Open-ended responses were subjected to content analysis to understand participants' future meat-consumption preferences and accompanying reasoning strategies. Findings from the present study contribute to understanding how cognitive dissonance and inconsistencies are rationalised by meat consumers.

Attachment, Mothering and Mental Illness: Mother-Infant Therapy in an Institutional Context.

This paper is an ethnographic exploration of how attachment theory underpins therapeutic practices in an Australian institutional context where mothers of infants have been diagnosed and are undergoing treatment for mental illness. We argue that attachment theory in this particular context rests on a series of principles or assumptions: that attachment theory is universally applicable; that attachment is dyadic and gendered; that there is an attachment template formed which can be transferred across generations and shapes future social interactions; that there is understood to be a mental health risk to the infant when attachment is characterised as problematic; and that this risk can be mitigated through the therapeutic practices advocated by the institution. Through an in-depth case study, this paper demonstrates how these assumptions cohere in practice and are used to assess mothering as deficient, to choose therapeutic options, to shape women's behaviour, and to formulate decisions about child placement.

Attending patient funerals: Practices and attitudes of Australian medical practitioners.

The appropriateness of attending a patient's funeral is a medical dilemma. This article focuses on 437 doctors who participated in an online survey. Seventy-one percent of general practitioners, 67% of oncologists, 67% of psychiatrists, 63% of palliative medicine specialists, 52% of surgeons, and 22% of intensive care specialists had attended patient funerals. Significant differences in demographics and between specialties were identified in terms of barriers and benefits associated with attendance. Although attendance is a personal decision, there is a need for open discussions in medical education and professional development concerning death and the role of doctors after a patient dies.

Uncertain Diagnostic Language Affects Further Studies, Endoscopies, and Repeat Consultations for Patients With Functional Gastrointestinal Disorders.

BACKGROUND & AIMS: Although guidelines state that functional gastrointestinal disorders (FGIDs) can be diagnosed with minimal investigation, consultations and investigations still have high costs. We investigated whether these are due to specific behaviors of specialist clinicians by examining differences in clinician approaches to organic gastrointestinal diseases vs FGIDs. METHODS: We performed a retrospective review of 207 outpatient department letters written from the gastroenterology unit at a tertiary hospital after patient consultations from 2008 through 2011. We collected data from diagnostic letters and case notes relating to patients with organic (n = 108) or functional GI disorders (n = 119). We analyzed the content of each letter by using content analysis and reviewed case files to determine which investigations were subsequently performed. Our primary outcome was the type of diagnostic language used and other aspects of the clinical approach. RESULTS: We found gastroenterologists to use 2 distinct types of language, clear vs qualified, which was consistent with their level of certainty (or lack thereof), for example, "the patient is diagnosed with…." vs "it is possible that this patient might have….". Qualified diagnostic language was used in a significantly higher proportion of letters about patients with FGIDs (63%) than organic gastrointestinal diseases (13%) (P < .001). In addition, a higher proportion of patients with FGIDs underwent endoscopic evaluation than patients with organic gastrointestinal diseases (79% vs 63%; P < .05). CONCLUSIONS: In an analysis of diagnoses of patients with FGIDs vs organic disorders, we found that gastroenterologists used more qualified (uncertain) language in diagnosing patients with FGIDs. This may contribute to patient discard of diagnoses and lead to additional, unwarranted endoscopic investigations.

Not appropriate dinner table conversation? Talking to children about meat production.

Although Australians on average consume large quantities of meat, their attitudes to farm animal welfare are poorly understood. We know little about how farm animal production is discussed in Australian households or how children learn about the origins of meat. This study consisted of an online survey completed by 225 primary carers throughout Australia recruited through social media. Findings include that conversations about the origin of meat were generally stimulated by meal preparation within the home rather than visits to agricultural shows or similar activities. Parents preferred to initiate conversations with children about meat production before they were 5 years of age. Urban parents were more likely than rural parents to reveal that they were conflicted about eating meat and would be more empathetic to children who chose to stop eating meat. Rural parents were more likely than urban parents to feel that children should eat what they are given and that talking about meat is not a major issue. Both groups felt that it was important that children should know where their food comes from. The findings of this study suggest that parental attitudes to meat production and consumption influence conversations about meat origins with children.

Is death our business? Philosophical conflicts over the end-of-life in old age psychiatry.

OBJECTIVES: Old age psychiatrists work with end-of-life (EOL) issues and encounter patient deaths, but death and dying have received limited focus in old age psychiatry training and research. This qualitative study explores old age psychiatrists' experience of and approach to working with patients at the EOL. METHOD: Australian old age psychiatrists were purposively sampled and interviewed in-depth. Data saturation was achieved after nine participant interviews. Verbatim transcripts were analysed for themes, which were independently verified. RESULTS: Two dichotomous overarching themes were identified. Death is not our business reflected participants' experience of working in a mental health framework and incorporated four themes: death should not occur in psychiatry; working in a psychiatric treatment model; keeping a distance from death and unexpected death is a negative experience. Death is our business reflected participants' experience of working in an aged care context and incorporated four themes: death is part of life; encountering the EOL through dementia care; doing EOL work and expected death is a positive experience. CONCLUSION: Participants reported conflict because of the contradictory domains in which they work. They were comfortable working with patients at the EOL when death was expected, particularly in dementia. By contrast, they struggled with death as an adverse outcome in circumstances influenced by mental health culture, which was characterised by risk management, suicide prevention and a focus on recovery. This study has implications for models of care underpinning old age psychiatry. An integrated person-centred model of care may provide a contextually appropriate approach for practice.

Depression means different things: A qualitative study of psychiatrists' conceptualization of depression in the palliative care setting.

OBJECTIVE: Medical practitioners conceptualize depression in different ways, which adds to the challenges of its diagnosis and treatment, as well as research in the palliative care setting. Psychiatric assessment is often considered the "gold standard" for diagnosis, therefore how psychiatrists conceptualize depression in this setting is pertinent. Our study aimed to investigate this issue. METHOD: Psychiatrists working in palliative care in Australia were individually interviewed using a semistructured approach. Nine participants were interviewed to reach data saturation. Interview transcripts were analyzed for themes. RESULTS: Three overarching themes were identified: (1) depression means different things; (2) depression is conceptualized using different models; and (3) depression is the same concept within and outside of the palliative care setting. Participants explicitly articulated the heterogeneous nature of depression and described a different breadths of concepts, ranging from a narrow construct of a depressive illness to a broader one that encompassed depressive symptoms and emotions. However, depressive illness was a consistent concept, and participants considered this in terms of phenotypic subtypes. Participants used three models (spectral, dichotomous, and mixed) to relate various depressive presentations. SIGNIFICANCE OF RESULTS: Psychiatrists did not subscribe to a unitary model of depression but understood it as a heterogeneous concept comprised of depressive illness and other less clearly defined depressive presentations. Given the influence of psychiatric opinion in the area of depression, these findings may serve as a platform for further discussions to refine the concepts of depression in the palliative care setting, which in turn may improve diagnostic and treatment outcomes.

The neonatal nurses' view of their role in emotional support of parents and its complexities.

AIMS AND OBJECTIVES: To explore the nurses' views of their role both in the neonatal intensive care unit and in the provision of interacting with, and emotionally supporting, families. BACKGROUND: The neonatal intensive care nurse has a large and complex clinical role and also a role of emotional supporter for parents in the neonatal intensive care unit. Identifying components of their role and recognising the elements within the nursery that obstruct or encourage this role can allow for modification of nurse education and peer support. DESIGN: Qualitative study based on semistructured interviews. METHODS: Nine neonatal nurses from a single neonatal intensive care unit were interviewed and the data analysed thematically using NVIVO version 10. RESULTS: Participants viewed their role as an enjoyable yet difficult one, requiring seniority, training and experience. They provided support to parents by communicating, listening, providing individualised support and by encouraging parental involvement with their baby. Constructive elements that contributed to the provision of support included a positive neonatal intensive care unit environment and providing a parent support group. More obstructive elements were a lack of physical neonatal intensive care unit space, little time available for nurse-to-parent conversation and language and cultural barriers between nurses and parents. CONCLUSION: The role of the neonatal nurse in providing emotional support is complex and requires a high level of ongoing support and education for staff, and minimisation of physical and staff-related obstructions. RELEVANCE TO CLINICAL PRACTICE: The modern neonatal intensive care unit offers complex medical and nursing services and with this care comes higher needs from both babies and their parents. Neonatal intensive care unit nurses should be supported in their roles by having peer support available in the neonatal intensive care unit and education and training in emotional support and counselling skills. The nursing staff also require a comfortable and practical physical working space in which to assist parents to be with their baby.

The experiences, coping mechanisms, and impact of death and dying on palliative medicine specialists.

OBJECTIVES: Research on the experiences, coping mechanisms, and impact of death and dying on the lives of palliative medicine specialists is limited. Most research focuses on the multidisciplinary team or on nurses who work with the dying. Fewer studies consider medical professionals trained in palliative medicine. This study aimed to explore the experiences, coping mechanisms, and impact of death and dying on palliative medicine specialists when dealing with their patients at the end of life. METHODS: A qualitative research approach guided the study, one-on-one interview data were analyzed thematically. A purposeful sampling technique was employed for participant recruitment. Seven palliative medicine specialists practicing in one city participated in open-ended, in-depth interviews. RESULTS: The analysis of participants' accounts identified three distinct themes. These were Being with the dying, Being affected by death, and dying and Adjusting to the impact of death and dying. SIGNIFICANCE OF RESULTS: This study further contributes to the understanding of the impact of death and dying on professionals who care for dying patients and their families. Despite the stressors and the potential for burnout and compassion fatigue, these participants employed strategies that enhanced meaning-making and emphasized the rewards of their work. However, the consequences of work stressors cannot be underestimated in the practice of palliative care.