Family Caregiver Participation in Palliative Care Research: Challenging the Myth

Context: Despite international guidelines emphasizing consumer-directed care and autonomous decisions in research participation, there is a common myth that research can be an additional and unwanted burden on patients and their family members. Objectives: To examine the experiences and impact of research involvement on family caregivers (FCs) of terminally ill people, focusing within home-based palliative care. Methods: Three hundred sixteen of 322 participants (98.1%), who completed an FC support intervention through a stepped-wedge cluster trial (Australia, 2012-2015), participated in a postintervention telephone interview on their study experiences, which included quantitative and qualitative questions. Results: Ninety-seven percent of both the control (n = 89) and intervention (n = 227) groups perceived positive aspects, whereas almost all did not report any negative aspects of being involved in this research; the majority rated their involvement as very/extremely beneficial (control 77%; intervention 83%). The qualitative analysis generated three major themes: "intrapersonal-inward directed"; "connection with others-outward directed"; and "interpersonal-participant-researcher relationship.". Conclusions: This study provided quantitative and qualitative evidence challenging the myth. In contrast to health professional concerns, FCs appreciated the opportunity to participate and benefited from their involvement in research. Research protocols need to be specifically tailored to the needs of family caregivers and include debriefing opportunities for all participants at the end of intervention studies, regardless of which group they have been assigned. Strategies that facilitate health professionals' understanding of the research and risk benefits may help reduce gatekeeping and improve the validity of research findings

Evaluation of African American Language Bias in Natural Language Generation

We evaluate how well LLMs understand African American Language (AAL) in comparison to their performance on White Mainstream English (WME), the encouraged "standard" form of English taught in American classrooms. We measure LLM performance using automatic metrics and human judgments for two tasks: a counterpart generation task, where a model generates AAL (or WME) given WME (or AAL), and a masked span prediction (MSP) task, where models predict a phrase that was removed from their input. Our contributions include: (1) evaluation of six pre-trained, large language models on the two language generation tasks; (2) a novel dataset of AAL text from multiple contexts (social media, hip-hop lyrics, focus groups, and linguistic interviews) with human-annotated counterparts in WME; and (3) documentation of model performance gaps that suggest bias and identification of trends in lack of understanding of AAL features.Comment: EMNLP 2023 Camera-Read

Follow-up of breast cancer patients: Preliminary findings from nurse-patient consultations and patients surveys

BACKGROUND: Although clinicians in both primary and tertiary care settings are involved in the care of breast cancer patients following the active treatment phase, few studies report how patients interact with health care providers.METHODS: Participants in this breast cancer follow-up study were recruited from a hospital based nurse-led follow-up clinic in Western Australia. Methods included audio taped, transcribed consultations with Specialist Breast Nurses (SBNs) and patient self-completed surveys.RESULTS: Preliminary data suggest that SBNs play an important role in supporting women to deal with the impact of breast cancer in the years following active treatment. The data suggest that the process of adjustment to a diagnosis of cancer continues for many years after the treatment has ceased. In many cases the women require on-going support to recalibrate their response to normal physical changes that may or may not be a consequence of surgery, radiotherapy and chemotherapy.CONCLUSIONS: These preliminary data map the plethora of issues that influence cancer patients in the years following treatment. Women who were attending follow-up appointments for breast cancer experienced similar levels of enablement following SBN consultations as would be expected from consultations with general practitioners

Follow Up Of Breast Cancer Patients.

BACKGROUND:Although clinicians in both primary and tertiary care settings are involved in the care of breast cancer patients following the active treatment phase, few studies report how patients interact with health care providers.METHODS:Participants in this breast cancer follow-up study were recruited from a hospital based nurse-led follow-up clinic in Western Australia. Methods included audio taped, transcribed consultations with Specialist Breast Nurses (SBNs) and patient self-completed surveys.RESULTS:Preliminary data suggest that SBNs play an important role in supporting women to deal with the impact of breast cancer in the years following active treatment. The data suggest that the process of adjustment to a diagnosis of cancer continues for many years after the treatment has ceased. In many cases the women require on-going support to recalibrate their response to normal physical changes that may or may not be a consequence of surgery, radiotherapy and chemotherapy.CONCLUSIONS:These preliminary data map the plethora of issues that influence cancer patients in the years following treatment. Women who were attending follow-up appointments for breast cancer experienced similar levels of enablement following SBN consultations as would be expected from consultations with general practitioners

The impact of the carer support needs assessment tool (CSNAT) in community palliative care using a stepped wedge cluster trial.

Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers' needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support and reduction in caregiver strain

An inclusive approach to raising standards in general practice: working with a 'community of practice' in Western Australia

<p>Abstract</p> <p>Background</p> <p>In this study we explored the challenges to establishing a community of practice (CoP) to address standards in general practice. We focused on the issue of improving referral letters which are the main form of communication between general practitioners (GPs) and specialists. There is evidence to suggest that the information relayed to specialists at the time of referral could be improved.</p> <p>Methods</p> <p>We aimed to develop a community of practice consisting of GPs in Western Australia to improve the quality of referral letters to six specialty clinics. Three phases included: establishing the CoP, monitoring the progress of the CoP and sustaining and managing the CoP. The CoP's activity centred on referral letters to each of six selected specialties. A local measure for the quality of the referral letters was developed from a survey of participants about specific items of history and weighted for their perceived importance in the referral letter. Referral letters by participants written before and after the benchmarking exercise were scored for quality based on the standards set by the CoP. Feedback to participants regarding the 'quality' of their individual referrals was provided by a nominated member of the CoP, including a comparison of before and after scores.</p> <p>Results</p> <p>15 GPs were recruited. Only five GPs submitted referral letters both before and after benchmarking. The five GPs that participated in both study phases submitted a total of 102 referral letters (53 before and 49 after). There was a 26 point (95% CI 11–41) improvement in the average scores of the second set of letters after taking clustering by speciality into account, indicating the quality of referral letters improved substantially after feedback.</p> <p>Conclusion</p> <p>There are many challenges to forming a CoP to focus on improving a specific issue in general practice. However we were able to demonstrate that those practitioners who participated in all aspects of the project substantially improved the quality of their referral letters. For recruitment it was important to work with a champion for the project from within the practice. The project took several months to complete therefore some GPs became disengaged. Some were very disappointed by their performance when compared to colleagues. This reaction may be an important motivation to change, however it needs to be sensitively handled if participants are not to become disillusioned or disheartened.</p

Exploring the Support Needs of Family Caregivers of Patients with Brain Cancer Using the CSNAT: A Comparative Study with Other Cancer Groups

A substantial burden is placed on family caregivers of patients diagnosed with brain cancers. Despite this, the support needs of the caregivers are often under-recognised and not addressed adequately in current routine and patient centred clinical care. The Care Support Needs Assessment Tool (CSNAT) is a validated instrument designed to systematically identify and address caregiver needs. It has been trialled in an Australian palliative care community setting using a stepped wedge cluster design involving 322 family carers of terminally ill patients. The current article reports on a subset from this trial, 29 caregivers of patients with primary brain cancer, and compares their profile and outcomes to those of other cancer groups. Caregiver strain was assessed using the Family Appraisal of Caregiving Questionnaire, caregiver physical and mental wellbeing using SF12 and caregiver workload using a questionnaire on support with activities of daily living (ADL). In comparison to caregivers of patients with all other cancers, the primary brain cancer group had significantly higher levels of caregiver strain, lower levels of mental wellbeing and a higher level of ADL workload. Their physical wellness also deteriorated significantly over time.An action plan approach led to practical solutions for addressing highlighted concerns. Four themes evolved from the family caregivers’ feedback interviews: The extremely challenging caregiver experience with brain cancer; the systematic and practical approach of the CSNAT during rapid changes; connection with health professionals, feeling acknowledged and empowered; and timely advice and assurance of support during the caregiving journey. This preliminary study has demonstrated that the CSNAT provides a practical and useful tool for assessing the support needs of family caregivers of patients with brain cancer and has provided the basis for a larger scale, longitudinal study that allows a more detailed characterisation of the evolving caregiver needs at different stages of the disease

Complement Receptor 1 Is a Sialic Acid-Independent Erythrocyte Receptor of Plasmodium falciparum

Plasmodium falciparum is a highly lethal malaria parasite of humans. A major portion of its life cycle is dedicated to invading and multiplying inside erythrocytes. The molecular mechanisms of erythrocyte invasion are incompletely understood. P. falciparum depends heavily on sialic acid present on glycophorins to invade erythrocytes. However, a significant proportion of laboratory and field isolates are also able to invade erythrocytes in a sialic acid-independent manner. The identity of the erythrocyte sialic acid-independent receptor has been a mystery for decades. We report here that the complement receptor 1 (CR1) is a sialic acid-independent receptor for the invasion of erythrocytes by P. falciparum. We show that soluble CR1 (sCR1) as well as polyclonal and monoclonal antibodies against CR1 inhibit sialic acid-independent invasion in a variety of laboratory strains and wild isolates, and that merozoites interact directly with CR1 on the erythrocyte surface and with sCR1-coated microspheres. Also, the invasion of neuraminidase-treated erythrocytes correlates with the level of CR1 expression. Finally, both sialic acid-independent and dependent strains invade CR1 transgenic mouse erythrocytes preferentially over wild-type erythrocytes but invasion by the latter is more sensitive to neuraminidase. These results suggest that both sialic acid-dependent and independent strains interact with CR1 in the normal red cell during the invasion process. However, only sialic acid-independent strains can do so without the presence of glycophorin sialic acid. Our results close a longstanding and important gap in the understanding of the mechanism of erythrocyte invasion by P. falciparum that will eventually make possible the development of an effective blood stage vaccine

Women with breast cancers’ preferences for surveillance follow-up

Background: On completion of treatment people with breast cancer are offered surveillance at a hospital clinic and/or in primary care. It is unclear whom patients prefer to consult about their problems following cancer treatment. Method: Patients being followed up by a hospital nurse were surveyed at their follow-up appointment and three months later. The survey included demographic information, symptom profile, and the Patient Enablement Index (PEI). A subsequent survey of the patients’ general practitioners (GPs)s confirmed which patients had consulted their GP prior to the nurse appointment. Three months after their appointment patients completed the PEI and were surveyed about their preference of practitioner for problems following treatment. Results: 101 patients responded to the first survey and 60 patients to the follow-up survey. In 68% of cases women reported that they did not consult their GP about breast cancer related symptoms prior to their appointment at the clinic, choosing instead to present to a Breast Care Nurse (BCN). In the survey patients preferred their GP if they needed a physical examination (p = 0.007) or referral to a specialist (p < 0.001). Older patients were more likely to choose a BCN if they wanted a mammogram and a GP if they wanted a physical exam or emotional support. The PEI scores after follow-up with the BCNs were equivalent to those reported following GP consultations