Co-designing complex therapy interventions with parents as partners in the care of children with cerebral palsy: An Experience-based Co-design study in England.

BACKGROUND: Parents of children with hemiplegic cerebral palsy are increasingly involved in therapy intervention delivery. Enhancing the ways that parents are supported in delivery is key to optimising outcomes. This study aimed to refine an existing programme in England to better support parents partnering in their child's intervention delivery. METHODS AND PROCEDURES: Experience-based Co-design (EBCD) fostered collaboration between parents and therapists to identify shared improvement priorities and develop solutions. The study included eighteen interviews and sixteen co-design meetings involving twenty parents and eight therapists in total. Intervention development followed the MRC Framework for developing and evaluating complex interventions. OUTCOMES AND RESULTS: Themes from parent and therapist interviews informed priority setting for the co-design work. Three key shared priorities emerged a) accessing rehabilitation; b) fostering partnership and c) parent learning. Aligned with these priorities, three mixed parent and therapist co-design teams produced a) a parent booklet; an education outline for healthcare professionals; b) partnership principles; adaptations to intervention logbooks c) an online parent education session. CONCLUSIONS AND IMPLICATIONS: Engaging parents and therapists in a structured co-design process using EBCD yielded innovative interventions supporting parents in delivering therapy for children with hemiplegia. This collaborative approach is anticipated to enhance programme implementation and effectiveness.

Nurse and pharmacist systemic anti-cancer therapy review clinics and their impact on patient experience and care: A systematic review.

AIM: To review the evidence of how nurse and pharmacist roles have been incorporated into the management of patients undergoing systemic anti-cancer therapy (SACT) services and their impact on patient experience and care provision. DESIGN: Systematic Review. DATA SOURCES: Seven databases were searched on 10 April 2022. REVIEW METHODS: Research studies that met defined inclusion criteria were included. Quantitative findings were converted into textual descriptions and combined with qualitative results for thematic analysis. Data were categorized and aggregated into themes. Heterogeneity of studies meant meta-analysis was not possible. RESULTS: Fifteen papers were included. Three main themes were identified: advanced clinical practice (ACP) SACT service development; ACP skills and qualifications; and the impact of ACP SACT services on patient care and outcomes. There is a variation in tasks undertaken by nurses and pharmacists and role integration is restricted by limited physician engagement. Role titles used and skills and qualifications acquired differ and professional autonomy is variable. Qualitative studies were limited. CONCLUSION: Evidence of how nursing and pharmacist ACP roles are implemented, what skills are essential and how roles are impacting patient experience and outcomes is limited. More research is required to explore patient and physician experience of, and satisfaction with multi-professional care, alongside further evaluation of clinical delivery models.

Preparing children's nurses for working with children and adolescents who self-harm: Evaluating the 'our care through our eyes' e-learning training package.

Rates of self-harm among children and adolescents have risen significantly over the past decade and clinical guidelines place children's nurses at the heart of their care. This article reports on the evaluation of 'Our Care Through Our Eyes', an online self-harm learning programme for children's nurses. A self-selected, convenience sample of registered children's nurses (n = 42) completed scales pre- and postlearning programme that captured their attitudes, beliefs, empathy, anxiety, and confidence. Mean change scores were assessed, and qualitative comments captured postintervention were thematically summarized. There were small improvements in participants' attitudes, empathy and confidence were reported. Anxiety scores increased in a small number of items. Qualitative comments confirmed the value of the online learning programme for improving children's nurses' knowledge and understanding of self-harm among CYP. Our findings demonstrate that children's nurses agree on the importance of mental health training in self harm, and this could be a catalyst for renewal of both pre- and postregistration education including support structures within the National Health Service. This study is the first to explore the feasibility of evaluating 'Our Care Through Our Eyes' delivered using e-leaning and could be used to inform further investigations.

Developing a theory-informed complex intervention to improve nurse-patient therapeutic engagement employing Experience-based Co-design and the Behaviour Change Wheel: an acute mental health ward case study.

OBJECTIVES: Our objectives were threefold: (1) describe a collaborative, theoretically driven approach to co-designing complex interventions; (2) demonstrate the implementation of this approach to share learning with others; and (3) develop a toolkit to enhance therapeutic engagement on acute mental health wards. DESIGN AND PARTICIPANTS: We describe a theory-driven approach to co-designing an intervention by adapting and integrating Experience-based Co-design (EBCD) with the Behaviour Change Wheel (BCW). Our case study was informed by the results of a systematic integrative review and guided by this integrated approach. We undertook 80 hours of non-participant observations, and semistructured interviews with 14 service users (7 of which were filmed), 2 carers and 12 clinicians from the same acute ward. The facilitated intervention co-design process involved two feedback workshops, one joint co-design workshop and seven small co-design team meetings. Data analysis comprised the identification of touchpoints and use of the BCW and behaviour change technique taxonomy to inform intervention development. SETTING: This study was conducted over 12 months at an acute mental health organisation in England. RESULTS: The co-designed Let's Talk toolkit addressed four joint service user/clinician priorities for change: (1) improve communication with withdrawn people; (2) nurses to help service users help themselves; (3) nurses to feel confident when engaging with service users; (4) improving team relations and ward culture. Intervention functions included training, education, enablement, coercion and persuasion; 14 behaviour change techniques supported these functions. We detail how we implemented our integrated co-design-behaviour change approach with service users, carers and clinicians to develop a toolkit to improve nurse-patient therapeutic engagement. CONCLUSIONS: Our theory-driven approach enhanced both EBCD and the BCW. It introduces a robust theoretical approach to guide intervention development within the co-design process and sets out how to meaningfully involve service users and other stakeholders when designing and implementing complex interventions.

"What matters to me": A multi-method qualitative study exploring service users', carers' and clinicians' needs and experiences of therapeutic engagement on acute mental health wards.

Nurse-patient therapeutic engagement on acute mental health wards is beneficial to service users' outcomes and nurses' job satisfaction. However, engagement is not always fulfilled in practice and interventions to improve engagement are sparse and ineffective. We explored the experiences of service users, carers, and clinicians drawing from 80 hours of non-participant observations in an acute mental health ward and semi-structured interviews with 14 service users, two carers, and 12 clinicians. Analysis of these data resulted in 28 touchpoints (emotionally significant moments) and eight overarching themes. Service users, carers, and clinicians identified a lack of high-quality, person-centred, collaborative engagement and recognized and supported efforts to improve engagement in practice. Potential solutions to inform future intervention development were identified. Our findings align with previous research highlighting negative experiences and support the need to develop multicomponent interventions through participatory methods.

Patient experience of pregnancy-related venous thrombosis: A phenomenological study.

This study used a descriptive phenomenological approach to explore the lived experience of women diagnosed with VTE in pregnancy and the perinatal period. The study setting was a London, university affiliated hospital. The sample consisted of nine women with deep vein thrombosis or pulmonary embolism in pregnancy or up to six weeks post-partum, diagnosed in the last two years. Semi-structured interviews were undertaken using an interview guide. Interviews were transcribed and analysed using phenomenological descriptive analysis. Clustered invariant constituents that represented the lived experience of subjects emerged. The study revealed that the experience of pregnancy-related venous thrombosis is an overwhelmingly negative one with the journey through diagnosis and treatment being fraught with challenges, uncertainty and anxiety. Four main themes that contributed to the women's lived experience were identified: 1. Challenges in establishing a diagnosis; 2. Dealing with diagnosis; 3. Coping with treatment; and 4. Fears for the future. This is the first study to explore the experience of pregnancy-related venous thrombosis and offers valuable insight into the phenomenon. There is opportunity for clinicians to enhance the experience of pregnancy-related venous thromboembolism (PRVTE) by improving communication and information given to patients, clarifying diagnostic and treatment pathways and improving awareness of the condition.

Conceptualising nurse-patient therapeutic engagement on acute mental health wards: An integrative review.

OBJECTIVES: The review aimed to 1) explore the constituents of nurse-patient therapeutic engagement on acute mental health wards; 2) map factors that influence engagement to the Theoretical Domains Framework and 3) integrate results into a conceptual model of engagement to inform the development of interventions to improve engagement. DESIGN: A systematic integrative review using an established framework specific to the integrative review methodology. DATA SOURCES: Database searches (CINAHL, PsycINFO, BNI and Cochrane Library) and hand searching identified 3414 articles. After screening, applying eligibility criteria, and quality appraisal, 37 articles were included: n = 27 empirical research studies, n = 10 expert opinion pieces, n = 1 case study and n = 1 theoretical report. REVIEW METHODS: Peer-reviewed empirical studies, theoretical reports or expert opinion pieces that explored therapeutic engagement as a stated aim and were conducted in acute mental health inpatient settings from the patient or nurse perspective were included. Data were extracted from the introduction, results and discussion sections of empirical research, and the complete article of theoretical and expert opinion pieces. Data were coded then grouped into subthemes and themes. Data relating to influencing factors were further categorised according to the Theoretical Domains Framework. Results were synthesised into a conceptual model of engagement. RESULTS: Five conceptually distinct, but closely related constructs of engagement - called the "Principles of Engagement" - emerged: 1) Understanding the person and their experiences; 2) Facilitating growth; 3) Therapeutic use of self; 4) Choosing the right approach and 5) Authoritative vs. emotional containment. Influences on engagement ranged across all 14 theoretical domains of the Theoretical Domains Framework. CONCLUSION: A holistic understanding of the essential components of engagement may make it easier for nurses to recognise what they do, and to do it well. The model can be used to generate testable hypotheses about how and where to target behavioural change interventions. The Principles of Engagement must be reflected in the development of interventions to improve engagement.

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 (QoL) 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 QoL in people with recurrent/metastatic cancer. DESIGN: We used a mixed-methods design comprising a 2-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 min 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 QoL, activity, fatigue, mood and self-efficacy were completed at baseline and 6, 12 and 24 weeks. RESULTS: We recruited 42 (38%) 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 while 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. TRIAL REGISTRATION NUMBER: ISRCTN42072606.

CanWalk: study protocol for a randomized feasibility trial of a walking intervention for people with recurrent or metastatic cancer.

BACKGROUND: Increasing numbers of people in the UK are living with recurrent or metastatic cancer, many of whom experience reduced quality of life resulting from the physical and psychosocial consequences of cancer and its treatment. While drug treatments are important at alleviating some symptoms, there is increasing evidence of the benefits of exercise in enhancing quality of life and health outcomes. Walking is an inexpensive and accessible form of exercise. To our knowledge, no studies have investigated whether a walking intervention is sufficient to enhance quality of life and alleviate symptoms in people with recurrent or metastatic cancer across a range of tumor types. This paper describes the CanWalk study protocol, which aims to assess the feasibility and acceptability of undertaking a randomized controlled trial of a community-based walking program to enhance quality of life and well-being in people with recurrent or metastatic cancer. METHODS: A mixed methods feasibility study includes an exploratory two-center randomized controlled trial and qualitative interviews. A minimum of 60 participants will be recruited from two London NHS Trusts and randomized 1:1 between the walking intervention and standard care using minimization. The walking intervention consists of the initial provision of written/online information followed by a short motivational interview. Participants are instructed to walk for 30 min on alternate days and attend an organized volunteer-led walk once a week. Half of all participants will be asked to use a pedometer. Postal questionnaires will be completed at baseline (pre-randomization) and at 6, 12 and 24 weeks. A subsample of participants and stakeholders will be interviewed at the end of the study. RESULTS: Primary outcomes will be the acceptability and feasibility of the intervention and trial. A range of secondary outcome assessments needed to design a main study, including estimates of recruitment, adherence and variability in quality of life, will be evaluated. CONCLUSIONS: Data from this study will be used to refine the walking intervention, investigate the acceptability of the intervention and study design, and determine the most appropriate outcome measures thereby providing estimates of the factors needed to design the main study. TRIAL REGISTRATION: ISRCTN42072606.

Using patients' experiences to identify priorities for quality improvement in breast cancer care: patient narratives, surveys or both?

BACKGROUND: Patients' experiences have become central to assessing the performance of healthcare systems worldwide and are increasingly being used to inform quality improvement processes. This paper explores the relative value of surveys and detailed patient narratives in identifying priorities for improving breast cancer services as part of a quality improvement process. METHODS: One dataset was collected using a narrative interview approach, (n = 13) and the other using a postal survey (n = 82). Datasets were analyzed separately and then compared to determine whether similar priorities for improving patient experiences were identified. RESULTS: There were both similarities and differences in the improvement priorities arising from each approach. Day surgery was specifically identified as a priority in the narrative dataset but included in the survey recommendations only as part of a broader priority around improving inpatient experience. Both datasets identified appointment systems, patients spending enough time with staff, information about treatment and side effects and more information at the end of treatment as priorities. The specific priorities identified by the narrative interviews commonly related to 'relational' aspects of patient experience. Those identified by the survey typically related to more 'functional' aspects and were not always sufficiently detailed to identify specific improvement actions. CONCLUSIONS: Our analysis suggests that whilst local survey data may act as a screening tool to identify potential problems within the breast cancer service, they do not always provide sufficient detail of what to do to improve that service. These findings may have wider applicability in other services. We recommend using an initial preliminary survey, with better use of survey open comments, followed by an in-depth qualitative analysis to help deliver improvements to relational and functional aspects of patient experience.

Offering antenatal sickle cell and thalassaemia screening in primary care: a pre-post evaluation of a brief type of communication skills training.

OBJECTIVE: To evaluate brief communication skills training for healthcare professionals (HCPs) in offering antenatal sickle cell and thalassaemia (SCT) screening in primary care. DESIGN: Descriptive study within a cluster randomised controlled trial in 17 inner city practices. METHODS: 126 HCPs were invited to attend a training session. Outcome measures were: attendance; perceived usefulness of training; comfort and confidence in offering screening; offering screening at pregnancy confirmation consultations; gestational age at test uptake. RESULTS: 62% (78/126) HCPs attended training and 61 completed both pre- and post-training questionnaires. There were 49 new joiners and locums not in post at the start of the trial. After training, HCPs reported greater comfort [4.8 vs 5.4, p = 0.05] and confidence [4.6 vs 5.6, p<0.001] in offering screening. Pregnant women consulting trained HCPs were offered screening more frequently and at an earlier gestational age than those consulting untrained HCPs (75% vs 44%, χ(2) = 122, p<0.001; 91.5 days (attending training) vs 98.5 days (did not attend training) vs 101.8 days (new joiners and locums), F = 8.49, df 1069,2 p = 0.001). CONCLUSION: Brief communication skills training for HCPs in offering antenatal SCT screening in primary care is feasible and can be effective. PRACTICE IMPLICATIONS: Ways of maximising HCP attendance in training sessions requires consideration.

Implementing patient-centred cancer care: using experience-based co-design to improve patient experience in breast and lung cancer services.

PURPOSE: The aim of this paper was to briefly describe how the experience-based co-design (EBCD) approach was used to identify and implement improvements in the experiences of breast and lung cancer patients before (1) comparing the issues identified as shaping patient experiences in the different tumour groups and (2) exploring participants' reflections on the value and key characteristics of this approach to improving patient experiences. METHODS: Fieldwork involved 36 filmed narrative patient interviews, 219 h of ethnographic observation, 63 staff interviews and a facilitated co-design change process involving patient and staff interviewees over a 12-month period. Four of the staff and five patients were interviewed about their views on the value of the approach and its key characteristics. The project setting was a large, inner-city cancer centre in England. RESULTS: Patients from both tumour groups generally identified similar issues (or 'touchpoints') that shaped their experience of care, although breast cancer patients identified a need for better information about side effects of treatment and end of treatment whereas lung cancer patients expressed a need for more information post-surgery. Although the issues were broadly similar, the particular improvement priorities patients and staff chose to work on together were tumour specific. Interviewees highlighted four characteristics of the EBCD approach as being key to its successful implementation: patient involvement, patient responsibility and empowerment, a sense of community, and a close connection between their experiences and the subsequent improvement priorities. CONCLUSION: EBCD positions patients as active partners with staff in quality improvement. Breast and lung cancer patients identified similar touchpoints in their experiences, but these were translated into different improvement priorities for each tumour type. This is an important consideration when developing patient-centred cancer services across different tumour types.

Offering antenatal sickle cell and thalassaemia screening to pregnant women in primary care: a qualitative study of women's experiences and expectations of participation.

OBJECTIVE: To describe the acceptability to women of being offered antenatal Sickle cell and Thalassaemia (SC&T) screening in primary and secondary care at the visit to confirm pregnancy; and to explore the implications of their views for participating in decisions about their health care. METHODS: Qualitative semi-structured interviews were conducted with twenty-one ethnically diverse women registered at twenty-five general practices in two English inner-city Primary Care Trusts. The material was analysed thematically, using the method of constant comparison. RESULTS: Women generally welcomed the opportunity of early diagnosis, although they expected screening to confirm they were carrying a healthy child. Women felt general practitioners did not present antenatal screening as a choice, but they did not necessarily see this as a problem. Doctors were believed to be acting out of concern for the women's well being. CONCLUSIONS: Women were generally positive about being offered screening in primary care at the first visit to confirm pregnancy. To this extent it was acceptable to them, although this was largely informed by assumptions associated with being a 'good mother' rather than a straightforward enactment of informed choice, assumed by health-care policy. This represents the context in which women participate in decisions about their health care.

Offering antenatal sickle cell and thalassaemia screening to pregnant women in primary care: a qualitative study of GPs' experiences.

BACKGROUND: Timely antenatal sickle cell and thalassaemia (SC&T) screening for all women in primary care facilitates informed decision making, but little is known about its implementation. AIM: To assess the feasibility of offering antenatal SC&T screening in primary care at the time of pregnancy confirmation. DESIGN OF STUDY: Cross-sectional investigation of GPs' beliefs and perceived practices. METHOD: Informal face-to-face interviews with 34 GPs. SETTING: Seventeen inner-city general practices that offered antenatal SC&T screening as part of a trial. RESULTS: GPs identified both barriers and facilitators. Organisational barriers included inflexible appointment systems and lack of interpreters for women whose first language was not English. Professional barriers included concerns about raising possible adverse outcomes in the first antenatal visit. Perceived patient barriers included women's lack of awareness of SC&T. Hence, GPs presented the test to women as routine, rather than as a choice. Organisational facilitators included simple and flexible systems for offering screening in primary care, practice cohesion, and training. Professional facilitators included positive attitudes to screening for SC&T. Perceived patient facilitators included women's desire for healthy children. CONCLUSION: GPs reported barriers, as well as facilitators, to successful implementation but the extent to which screening could be regarded as offering 'informed choice' remained fundamental when making sense of these barriers and facilitators.

Effectiveness of earlier antenatal screening for sickle cell disease and thalassaemia in primary care: cluster randomised trial.

OBJECTIVE: To evaluate the effectiveness of offering antenatal screening for sickle cell disease and thalassaemia in primary care as a way of facilitating earlier uptake of screening. DESIGN: Partial factorial cluster randomised controlled trial. SETTING: 25 UK general practices from deprived inner city areas. PARTICIPANTS: Anonymised data on all pregnant women attending participating practices during a six month period before randomisation and a seven month period after randomisation. This included 1708 eligible women. INTERVENTION: Practices were randomised to three groups for seven months: parallel testing in general practice (tests for sickle cell disease and thalassaemia offered to both parents when pregnancy was first reported); sequential testing in general practice (tests offered to mothers when pregnancy was first reported, and subsequently to the partners of women who were found to be carriers); and midwife care (tests offered to mothers at first consultation with a midwife). MAIN OUTCOME MEASURES: The primary outcome (available for all women) was the proportion of eligible women screened before 10 weeks' (70 days') gestation. Secondary outcomes were an offer of screening to women before 10 weeks' gestation, gestational age at testing, mean interval from first visit to the general practice visit to screening, and women's knowledge of the carrier status of their baby's father before 77 days' (11 weeks') gestation. The study was designed to detect a 20% absolute increase in screening uptake. Cluster level analyses were adjusted for age group, parity, ethnic group, primary care organisation, and number of general practitioners per practice. RESULTS: Data were analysed for 1708 eligible women. In the midwife care arm, 2% (9/441) of women were screened before 10 weeks' gestation compared with 24% (161/677) in the GP parallel testing arm and 28% (167/590) in the GP sequential testing arm. The estimated adjusted difference between the midwife care and GP parallel testing arms was 16.5% (95% confidence interval 7.1% to 25.8%; P=0.002) and between the midwife care and GP sequential testing arms was 27.8% (14.8% to 40.7%; P<0.001). By 26 weeks' gestation the proportion of women screened across the three trial arms was similar (81%). The proportion of women who knew the carrier status of the baby's father by 11 weeks' gestation was 0% (0/441) in the midwife care arm, 2% (13/677) in the GP parallel testing arm (P=0.003), and 1% (3/590) in the GP sequential testing arm (P=0.374). CONCLUSION: Offering antenatal screening for sickle cell disease and thalassaemia as part of consultations for pregnancy confirmation in primary care increases the proportion of women screened before 10 weeks' gestation. Even with intervention, however, only a minority of women were screened before 10 weeks. Additional interventions should be considered to achieve testing early in pregnancy for most women wanting such tests so that couples with affected pregnancies have less time pressure to choose options, which may include termination of the pregnancy. TRIAL REGISTRATION: Current Controlled Trials ISRCTN00677850.

What women from an Islamic background in Australia say about care in pregnancy and prenatal testing.

OBJECTIVE: to examine satisfaction with care and services in relation to antenatal care and prenatal testing and to present what women say about what can be done better to improve antenatal care for women from an Islamic background. DESIGN: in-depth interviews of women's perceptions and experiences of care received relating to prenatal testing and antenatal care. SETTING: Melbourne Metropolitan Area, Victoria, Australia. PARTICIPANTS: 15 women of Islamic background who are now living in Melbourne. FINDINGS: in general, women had positive experiences with care relating to antenatal care and prenatal testing in Australia. This is particularly so when they compared care in Australia with that of their own country. However, women indicated several issues of concern where they were dissatisfied and they believed need to be improved for pregnant women from an Islamic background. Firstly, there was a lack of sufficient communication between health care providers and the women. This was not only due to a language problem, but also a lack of cultural appreciation among health care providers. Secondly, women identified the issue of gender of health care providers as important; women stated clearly their need to have female doctors for their care. CONCLUSIONS: the findings of this study have implications for antenatal care and prenatal testing services in Australia and elsewhere. Women provided several suggestions for the improvement of care including the need for sufficient information of prenatal testing and antenatal care and the need for culturally sensitive services. In providing services for women of an Islamic background, it is imperative that health care providers take into account individual women's preferences and personal circumstances and go beyond an assumption based on women's religion and ethnicity.