Helping patients prepare their dependent children for parental death: mixed-methods evaluation of a codeveloped training programme for palliative and allied healthcare professionals in the UK.

OBJECTIVES: To evaluate how the codesigned training programme, 'No conversation too tough', can help cancer, palliative and wider healthcare professionals support patients to communicate with their dependent children when a parent is dying. We examined perceptions of learning provided by the training, its contribution to confidence in communicating with families when a parent is dying, and subjective experience of, and reactions to, the training. We also explored potential changes in practice behaviours. DESIGN: Pre-post, convergent, parallel, mixed-methods study. Motivations for practice change were measured quantitatively, and qualitatively through semi-structured interviews. Non-parametric analysis was conducted for self-efficacy and outcome expectancy measures; descriptive statistics examined perceptions of usefulness; intentions to use learning in practice and reactions to the training. Semi-structured interviews examined motivations and perceptions of learning in depth. A 6-week, practice log recorded immediate practice effects and reflections. SETTING: 1-day training delivered 3 times, total delegates 36: online December 2021, February 2022, face-to-face March 2022. Questionnaires delivered correspondingly in online or paper formats, semi-structured interviews online. PARTICIPANTS: Pre-post: palliative care professionals (n=14/12), acute cancer clinical nurse specialists (n=16/11), other healthcare professionals (n=5/5). RESULTS: Positive changes were observed in self-efficacy (17 of 19 dimensions p<0.003) and outcome expectancies (3 of 14 beliefs p<0.036). Perceptions of usefulness and intentions to use learning in practice mean scores were 82-94 (scales 0=low to 100=high). There was high affirmation for sharing learning and influencing change in the workplace and wider practice. Content, style and delivery were positively endorsed. Further elements to be included in the training were identified. CONCLUSIONS: The training programme has the potential to effect change in practice behaviours. A large-scale study will evaluate the roll-out of the training delivered to individual professionals and whole teams across the UK. It will provide longer-term feedback to understand practice behaviour and mediators of change across professional roles.

The dying parent and dependent children: a nationwide survey of hospice and community palliative care support services.

BACKGROUND: Annually, across the world a substantial number of dependent children experience the death of a parent through life-limiting illness. Without support, this has long-term implications for children's emotional, social and physical well-being, impacting on health and social care services globally. Limited information exists on how service providers are meeting family needs when a parent with dependent children is dying. AIM: To determine the bereavement support provided to families with dependent children by UK hospices before and after a parent's death. DESIGN: A 23-item, cross-sectional, web-based survey of adult UK hospices. Closed and open-ended questions were asked about the features of support provided; open-ended response was sought to a question about the challenges faced by hospices in delivering support. Descriptive and non-parametric statistics and framework analysis were used to analyse the data. RESULTS: 197 hospices were invited to participate. Response rate was 66% (130/197). More types of support were provided after, than before, parental death (mean 6.36/5.64, z=-5.767, p<0001). Twenty-two per cent of hospices reported no formal processes for asking or documenting the presence of dependent children. Volunteers were an underused resource before parental death. Four themes characterised challenges in delivering support for families: emotional difficulties for families; practical and social difficulties for families; funding/resources; and staff training/numbers. CONCLUSIONS: Family needs are not consistently being met when a parent is dying. Areas for development include: enhanced systems to record when patients have dependent children; flexible approaches to support vulnerable families; staff training to help communication with families and management of their own fears of making the situation worse. Effective educational interventions and service developments to better support staff, parents and children are needed.

Randomised controlled trial to investigate the effectiveness of the symptom management after radiotherapy (SMaRT) group intervention to ameliorate lower urinary tract symptoms in men treated for prostate cancer.

PURPOSE: To evaluate the effectiveness of the symptom management after radiotherapy (SMaRT) group intervention to improve urinary symptoms in men with prostate cancer. METHODS: The randomised controlled trial (RCT) recruited men from one radiotherapy centre in the UK after curative radiotherapy or brachytherapy and with moderate to severe urinary symptoms defined as scores ≥ 8 on the International Prostate Symptom Score (IPSS) questionnaire. Sixty-three men were randomised either; to SMaRT, a 10-week symptom-management intervention including group support, education, pelvic floor muscle exercises, or a care-as-usual group. The primary outcome was the IPSS at 6 months from baseline assessment. Secondary outcomes were IPSS at 3 months, and International Continence Society Male Short Form (ICS), European Organisation for Research and Treatment of Cancer Quality of Life prostate scale (EORTC QLQ-PR25), EORTC QLQ-30 and Self-Efficacy for Symptom Control Inventory (SESCI) at 3 and 6 months from baseline. Analysis of covariance (ANCOVA) was used to analyse the effect of the intervention. RESULTS: SMaRT group intervention did not improve urinary symptoms as measured by IPSS at 6-months. The adjusted difference was - 2.5 [95%CI - 5.0 to 0.0], p = 0.054. Significant differences were detected at 3 months in ICS voiding symptoms (- 1.1 [- 2.0 to - 0.2], p = 0.017), ICS urinary incontinence (- 1.0 [- 1.8 to - 0.1], p = 0.029) and SESCI managing symptoms domain (13.5 [2.5 to 24.4], p = 0.017). No differences were observed at 6 months. CONCLUSIONS: SMaRT group intervention provided short-term benefit in urinary voiding and continence and helped men manage symptoms but was not effective long term.

Support interventions provided during palliative care to families with dependent children when a parent has terminal illness: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to identify and map support interventions provided during palliative care to families with dependent children when a parent has a terminal illness. INTRODUCTION: For dependent children, losing a parent through terminal illness can be one of the most traumatic experiences they will face. Without age-appropriate information and support, parental death can lead to unresolved grief, post-traumatic stress, and longer-term negative social, emotional, educational, and behavioral consequences. Support from health care professionals is provided, but challenges within hospice and community palliative care mean the needs of dependent children may not be addressed. Greater emphasis is often placed on children's and families' bereavement needs as opposed to their pre-bereavement needs. The status of pre-bereavement support in palliative care for these families has not been documented. INCLUSION CRITERIA: We will include studies of support interventions provided to families with dependent children when a parent has a terminal illness that are delivered during palliative care and in settings including, but not limited to, hospices, hospitals, and the community (including family and care homes). Empirical, peer-reviewed studies based on qualitative, quantitative, or mixed methods data, and gray literature, reporting any stage of intervention development will be included. METHODS: This review will follow the JBI approach for scoping reviews. Multiple database searches will be conducted. Two authors will independently review full-text articles and extract data. Interventions will be mapped in terms of characteristics, evaluation methods, and implementation challenges. Data will be presented in tables, diagrammatic form, and narrative summary.

A Web-Based Intervention to Reduce Distress After Prostate Cancer Treatment: Development and Feasibility of the Getting Down to Coping Program in Two Different Clinical Settings.

BACKGROUND: Distress after prostate cancer treatment is a substantial burden for up to one-third of men diagnosed. Physical and emotional symptoms and health service use can intensify, yet men are reticent to accept support. To provide accessible support that can be cost effectively integrated into care pathways, we developed a unique, Web-based, self-guided, cognitive-behavior program incorporating filmed and interactive peer support. OBJECTIVE: To assess feasibility of the intervention among men experiencing distress after prostate cancer treatment. Demand, acceptability, change in distress and self-efficacy, and challenges for implementation in clinical practice were measured. METHODS: A pre-post, within-participant comparison, mixed-methods research design was followed. Phase I and II were conducted in primary care psychological service and secondary care cancer service, respectively. Men received clinician-generated postal invitations: phase I, 432 men diagnosed <5 years; phase II, 606 men diagnosed <3.5 years. Consent was Web-based. Men with mild and moderate distress were enrolled. Web-based assessment included demographic, disease, treatment characteristics; distress (General Health Questionnaire-28); depression (Patient Health Questionnaire-9); anxiety (General Anxiety Disorder Scale-7); self-efficacy (Self-Efficacy for Symptom Control Inventory); satisfaction (author-generated, Likert-type questionnaire). Uptake and adherence were assessed with reference to the persuasive systems design model. Telephone interviews explored participant experience (phase II, n=10); interviews with health care professionals (n=3) explored implementation issues. RESULTS: A total of 135 men consented (phase I, 61/432, 14.1%; phase II, 74/606, 12.2%); from 96 eligible men screened for distress, 32% (30/96) entered the intervention (phase I, n=10; phase II, n=20). Twenty-four completed the Web-based program and assessments (phase I, n=8; phase II, n=16). Adherence for phase I and II was module completion rate 63% (mean 2.5, SD 1.9) versus 92% (mean 3.7, SD 1.0); rate of completing cognitive behavior therapy exercises 77% (mean 16.1, SD 6.2) versus 88% (mean 18.6, SD 3.9). Chat room activity occurred among 63% (5/8) and 75% (12/16) of men, respectively. In phase I, 75% (6/8) of men viewed all the films; in phase II, the total number of unique views weekly was 16, 11, 11, and 10, respectively. The phase II mood diary was completed by 100% (16/16) of men. Satisfaction was high for the program and films. Limited efficacy testing indicated improvement in distress baseline to post intervention: phase I, P=.03, r=-.55; phase II, P=.001, r=-.59. Self-efficacy improved for coping P=.02, r=-.41. Service assessment confirmed ease of assimilation into clinical practice and clarified health care practitioner roles. CONCLUSIONS: The Web-based program is acceptable and innovative in clinical practice. It was endorsed by patients and has potential to positively impact the experience of men with distress after prostate cancer treatment. It can potentially be delivered in a stepped model of psychological support in primary or secondary care. Feasibility evidence is compelling, supporting further evaluative research to determine clinical and cost effectiveness.

Self-management after prostate cancer treatment: evaluating the feasibility of providing a cognitive and behavioural programme for lower urinary tract symptoms.

OBJECTIVE: • To test the feasibility of a self-management intervention to help men cope with lower urinary tract symptoms as a result of radiotherapy for prostate cancer. PATIENTS AND METHODS: • A quasi-experimental design was used incorporating a pre-post-test evaluation. In total, a population of 71 men were screened for moderate to severe urinary symptoms 3 months or longer post-radiotherapy. Of these mean, 22 were recruited into the intervention from an eligible population of 43 symptomatic men. • Urinary symptoms were measured before the intervention and again after 4 months of follow-up through International Prostate Symptom Scores (IPSS) and bladder diaries. • Health-related quality of life was measured in relation to cancer per se and prostate cancer specifically, and confidence to cope was measured by a self-efficacy questionnaire. • The self-management intervention comprised pelvic floor muscle exercises, bladder retraining, patient education and problem solving and coping strategies RESULTS: • Lower urinary tract symptoms, as measured by the IPSS, showed a significant improvement, with a median score change of 5 (P < 0.005). • This was supported by objective changes in median bladder void volume of +7.5 mL (P < 0.05) and the median number of daily voids of -1 (P < 0.005). • In addition, decreases in emotional distress and problems associated with urinary function suggest that the intervention had a positive impact on health-related quality of life. CONCLUSIONS: • The provision of such an intervention was feasible within the clinical setting and provided benefits for men. • Symptom change vs those of normative recovery values for IPSS showed an intervention effect. • This intervention could be applied in routine practice and further testing is required in a randomized controlled trial.

Self-management for men surviving prostate cancer: a review of behavioural and psychosocial interventions to understand what strategies can work, for whom and in what circumstances.

OBJECTIVE: In the context of increasing prostate cancer survivorship, evidence of unmet supportive care needs and growing economic health-care restraints, this review examined and evaluated best approaches for developing self-management programmes to meet men's survivorship needs. METHODS: A search of international literature published in the last 12 years was conducted. Only randomised controlled trials were included in the analysis. Key components of the interventions were evaluated to determine what has been offered, and which elements are most beneficial in improving health outcomes. Methodological issues were also considered. RESULTS: Targeting participant need and promoting motivation to participate and maintain programme adherence were the most important factors to emerge in ensuring positive health outcomes. Both need and motivation are multi-faceted, the components of which are identified and evaluated. Guidance was also identified in relation to delivery design, theoretical mechanisms for change, modes of delivery and facilitator issues. CONCLUSION: Self-management is a viable and appropriate way of providing health-care solutions to ameliorate men's functional and emotional problems associated with increased prostate cancer survivorship. Integration into clinical practice will require training, resources and commitment and, in addition, economic viability will be difficult to assess since cost comparison with current provision is not straightforward. Nevertheless, from the psychosocial and behavioural studies reviewed there is convincing evidence that can be used to design, implement and evaluate future self-management programmes for men surviving prostate cancer.

Using the Barnes Language Assessment with older ethnic minority groups.

OBJECTIVE: There are many issues concerning the assessment of older people from ethnic minority groups, the most significant being the language barrier experienced by those whose English is an additional language (EAL). This study aimed to test the hypothesis that EAL participants would score less well than those with English as a first language (EFL) on the sub-tests of the Barnes Language Assessment (BLA), elucidate the reasons for any such differences and discuss the implications. METHODS: The Barnes Language Assessment (BLA) is an accurate tool providing information about expected patterns of language in different dementia syndromes. This study compares the performance of EAL participants with EFL participants. The BLA was administered to 144 participants, divided into sub-groups with respect to age, gender and educational background, none of whom had a working diagnosis of dementia. RESULTS: Results suggest that EAL speakers performed less well compared to EFL speakers when other variables were matched. Significantly better BLA scores, at the one percent level, were found in both EAL and EFL groups with higher educational achievement for eight of the 15 sub-tests. CONCLUSION: Differences were found in performance on the BLA between EAL and EFL participants. The degree of difference between EAL and EFL speakers decreased as educational achievement rose. The consequences of these findings for service delivery and the problems of recruitment of older EAL participants are discussed.

Nurse led telephone follow up in ovarian cancer: a psychosocial perspective.

Survivorship is a relatively new concept in ovarian cancer due to improvements in diagnosis, surgery and chemotherapy. As more women require long term follow up for ovarian cancer the pressure on these services is increased and the question of how best to care for these women needs to be addressed. This paper considers the results of a pilot study of nurse led telephone follow up in ovarian cancer from a psychosocial perspective. Fifty-two women received telephone follow up over a 10-month period; one aspect of this intervention was the opportunity for women to discuss psychosocial concerns with the clinical nurse specialist. A nurse database held records of patient discussions, and patient feedback regarding the service was collected using FACT Ovarian quality of life questionnaire, plus the satisfaction and experience with follow up questionnaire. Thirty-three women were recorded as discussing psychological concerns with the nurse, 42% discussed feelings of anxiety or depression and 33% discussed fear of disease recurrence. Thirty-nine women were recorded as having discussed social concerns with the nurse, 56% discussed their family (husband, children, etc.), 51% discussed work and/or finances, and 41% discussed sexual intimacy. The majority of women (73%) expressed a preference for nurse led telephone follow up, the main advantages were reported as the relationship and discussions between the patient and the nurse, and the convenience of having follow up appointments over the phone instead of attending clinic. This pilot study suggests that nurse led telephone follow up offers an acceptable opportunity for psychosocial support for women with ovarian cancer.