Enhancing the experience of carers in the chemotherapy outpatient setting: an exploratory randomised controlled trial to test impact, acceptability and feasibility of a complex intervention co-designed by carers and staff

PurposeSupporting someone through chemotherapy can be emotionally and physically demanding. However, research has yet to establish the type of support carers require or the best way to provide this. This study tested the feasibility and acceptability of a complex intervention for carers that was co-designed by staff and carers of patients starting chemotherapy.MethodsForty-seven carers were recruited, randomised between the intervention (n?=?24) and control (n?=?23) groups. A questionnaire was completed pre- and post-intervention measuring knowledge of chemotherapy and its side effects, experience of care, satisfaction with outpatient services, coping and emotional wellbeing. The intervention process was evaluated by carers and healthcare professionals (HCPs) in focus groups.ResultsRecruitment to the study was unproblematic and attrition from it was low, suggesting the intervention and study processes were acceptable to patients and carers. Carers in receipt of the ‘Take Care’ intervention reported statistically significantly better understanding of symptoms and side effects and their information needs being more frequently met than carers in the control. Confidence in coping improved between baseline and follow-up for the intervention group and declined for the control although differences were insufficient to achieve statistical significance. There was no significant difference between the two groups’ emotional wellbeing. HCP and carer focus groups confirmed the feasibility and acceptability of the intervention.ConclusionsThe ‘Take Care’ intervention proved acceptable to carers and HCPs and demonstrates considerable promise and utility in practice. Study findings support the conduct of a fully powered RCT to determine the intervention’s effectiveness and cost-effectiveness

CanWalk: a feasibility study with embedded randomised controlled trial pilot of a walking intervention for people with recurrent or metastatic cancer.

Objectives: Walking is an adaptable, inexpensive and accessible form of physical activity. However its impact on quality of life and symptom severity in people with advanced cancer is unknown. This study aimed to assess the feasibility and acceptability of a randomised controlled trial (RCT) of a community-based walking intervention to enhance quality of life (QoL) in people with recurrent/metastatic cancer. Design: We used a mixed-methods design comprising a two-centre RCT and nested qualitative interviews. Participants: Patients with advanced breast, prostate, gynaecological or haematological cancers randomised 1:1 between intervention and usual care. Intervention: The intervention comprised Macmillan’s ‘Move More’ information, a short motivational interview with a recommendation to walk for at least 30 minutes on alternate days and attend a volunteer-led group walk weekly. Outcomes: we assessed feasibility and acceptability of the intervention and RCT by evaluating study processes (rates of recruitment, consent, retention, adherence and adverse events), and using end of study questionnaires and qualitative interviews. Patient reported outcome measures (PROMS) assessing quality of life (QoL), activity, fatigue, mood and self-efficacy were completed at baseline and 6, 12 and 24 weeks. Results: We recruited 42 (38%) of eligible participants. Recruitment was lower than anticipated (goal n=60), the most commonly reported reason being unable to commit to walking groups (n=19). Randomisation procedures worked well with groups evenly matched for age, sex and activity. By week 24, there was a 45% attrition rate. Most PROMs whilst acceptable were not sensitive to change and did not capture key benefits. Conclusions: The intervention was acceptable, well tolerated and the study design was judged acceptable and feasible. Results are encouraging and demonstrate that exercise was popular and conveyed benefit to participants. Consequently, an effectiveness RCT is warranted, with some modifications to the intervention to include greater tailoring and more appropriate PROMs selected.</p

Non invasive prenatal testing for single gene disorders:Exploring the ethics

Non-invasive prenatal testing for single gene disorders is now clearly on the horizon. This new technology offers obvious clinical benefits such as safe testing early in pregnancy. Before widespread implementation, it is important to consider the possible ethical implications. Four hypothetical scenarios are presented that highlight how ethical ideals of respect for autonomy, privacy and fairness may come into play when offering non-invasive prenatal testing for single gene disorders. The first scenario illustrates the moral case for using these tests for ‘information only', identifying a potential conflict between larger numbers of women seeking the benefits of the test and the wider social impact of funding tests that do not offer immediate clinical benefit. The second scenario shows how the simplicity and safety of non-invasive prenatal testing could lead to more autonomous decision-making and, conversely, how this could also lead to increased pressure on women to take up testing. In the third scenario we show how, unless strong safeguards are put in place, offering non-invasive prenatal testing could be subject to routinisation with informed consent undermined and that woman who are newly diagnosed as carriers may be particularly vulnerable. The final scenario introduces the possibility of a conflict of the moral rights of a woman and her partner through testing for single gene disorders. This analysis informs our understanding of the potential impacts of non-invasive prenatal testing for single gene disorders on clinical practice and has implications for future policy and guidelines for prenatal care

Immigrant and non-immigrant women's experiences of maternity care: A systematic and comparative review of studies in five countries

Background: Understanding immigrant women’s experiences of maternity care is critical if receiving country care systems are to respond appropriately to increasing global migration. This systematic review aimed to compare what we know about immigrant and non-immigrant women’s experiences of maternity care. Methods: Medline, CINAHL, Health Star, Embase and PsychInfo were searched for the period 1989–2012. First, we retrieved population-based studies of women’s experiences of maternity care (n = 12). For countries with identified population studies, studies focused specifically on immigrant women’s experiences of care were also retrieved (n = 22). For all included studies, we extracted available data on experiences of care and undertook a descriptive comparison. Results: What immigrant and non-immigrant women want from maternity care proved similar: safe, high quality, attentive and individualised care, with adequate information and support. Immigrant women were less positive about their care than non-immigrant women. Communication problems and lack of familiarity with care systems impacted negatively on immigrant women’s experiences, as did perceptions of discrimination and care which was not kind or respectful. Conclusion: Few differences were found in what immigrant and non-immigrant women want from maternity care. The challenge for health systems is to address the barriers immigrant women face by improving communication,increasing women’s understanding of care provision and reducing discrimination

Middle Eastern mothers in Sweden, their experiences of the maternal health service and their partner's involvement

<p>Abstract</p> <p>Background</p> <p>Traditional patterns relating to how to handle pregnancy and birth are often challenged due to migration. The purpose of this study was to describe Middle Eastern mothers' experiences of the maternal health care services in Sweden and the involvement of their male partner.</p> <p>Methods</p> <p>Thirteen immigrant mothers from the Middle East who had used the maternal health services in Sweden were interviewed using focus group discussions and individual interviews. These were taped, transcribed and analysed according to Content analysis.</p> <p>Results</p> <p>The four main categories that developed were:</p> <p>• Access to the professional midwife</p> <p>• Useful counselling</p> <p>• Stable motherhood in transition</p> <p>• Being a family living in a different culture</p> <p>Conclusion</p> <p>According to the respondents in this study, understanding the woman's native language or her culture was not vital to develop a good relationship with the midwife. Instead the immigrant woman developed trust in the midwife based on the knowledge and the empathy the midwife imparted.</p> <p>Increasing the amount of first trimester antenatal visits could avoid spontaneous visits to the emergency clinic. There was a greater need for involvement and support by the father during the perinatal period, such as caring for older children and carrying out household chores since the mothers' earlier female network was often lost.</p> <p>Clinical implications</p> <p>There is a need to involve immigrant parents in the available parental education in order to prepare them for parenthood in their new country as well as to explore their altered family situation. Collecting immigrant women and their partner's, experiences of maternal health care services offers a possibility to improve the existing care, both in content, access and availability where the timing of visits and content require further evaluation.</p

Patient experience and overall satisfaction after emergency abdominal surgery

Abstract Background There is a growing recognition of the importance of patient experience in healthcare, however little is known in the context of emergency abdominal surgery. This study sought to quantify the association between patient experience and overall satisfaction. Methods Patient demographics, operation details and 30-day clinical outcome data of consecutive patients undergoing emergency abdominal surgery were collected. Data was collected using validated Patient Reported Experience Measures (PREMs) questionnaires. Categorical data were tested using Mann Whitney U test. Multivariable regression was used to determine independent factors associated with satisfaction. Results In a well-fitting multivariable analysis (R2 = 0.71), variables significantly associated with a higher global satisfaction score were “sufficient information given about treatment” (β = 0.86, 95% CI 0.01–1.70, p = 0.047), "sufficient explanation of risks and benefits of surgery" (β = 1.26, 95% CI 0.18–2.34, p = 0.020), “absence of night-time noise” (β = 1.35, 95% CI 0.56–2.14, p = 0.001) and “confidence and trust in nurses” (β = 1.51, 95% CI 0.54–2.49, p = 0.003). Conclusions Overall patient satisfaction was strongly associated with perceptions of good communication and transfer of information. Confidence and trust in the clinical team is an important determinant of patient experience. Improving the ward environment by reducing noise at night may also improve the overall experience and satisfaction in emergency surgery

Missed opportunities for physical activity management at key points throughout the chemotherapy pathway for colorectal survivors:an observational interview study

Purpose Physical activity (PA) is central to self-management for people with colorectal cancer (CRC) to support health behaviour and function secondary to cancer treatment. However, there is limited evidence on how health professionals (HPs) promote PA during cancer treatment. This study aimed to investigate how and when PA is promoted throughout the chemotherapy pathway among colorectal cancer survivors. Methods A qualitative study was conducted with adults with CRC receiving chemotherapy at a large cancer centre. Cross-sectional observation of clinical consultations was conducted at four points during the chemotherapy pathway: prior, midpoint, final cycle, and 8 weeks following chemotherapy. Following completion of treatment, audio-recorded, semi-structured interviews were conducted with patients and HPs and transcribed verbatim. Codes and themes were identified and triangulated from all the data using framework analysis. Observational themes are reported and complimented by interview data. Results Throughout the chemotherapy pathway (pre, midpoint, end), many opportunities were missed by HPs to promote PA as a beneficial means to maintain functioning and ameliorate cancer treatment side effects. When discussed, PA levels were used only to determine fitness for future oncological treatment. No PA promotion was observed despite patients reporting low PA levels or treatment side effects. Post-treatment, PA promotion was more routinely delivered by HPs, as evidenced by problem-solving and onward referrals to relevant HPs. Conclusion PA promotion was largely absent during treatment despite it being a key component of patient self-management following treatment. This suggests considerable missed opportunities for HPs to provide cancer survivors with PA evidence-based interventions. Further research is necessary to identify how best to ensure PA is promoted throughout the cancer journey. Implication for cancer survivors These findings suggest many may not be receiving support to be physically active during treatment.</p