Healthy Parent Carers programme: mixed methods process evaluation and refinement of a health promotion intervention

This is the final version. Available on open access from the BMJ Publishing Group via the DOI in this recordData availability statement; Data are available upon reasonable request.OBJECTIVES: Parent carers of children with special educational needs or disability are at risk of poorer mental and physical health. In response to these needs, we codeveloped the 'Healthy Parent Carers' (HPC) programme. This study examined the views and experiences of participants in the HPC feasibility trial to inform programme refinement. INTERVENTION, SETTING AND PARTICIPANTS: HPC is a peer-led group-based intervention (supported by online materials) for primary carers of disabled children, encouraging behaviours linked with health and well-being. It was delivered by two lead and six assistant peer facilitators in six community sites (one lead and one assistant per group) in South West England over six or 12 sessions. Control participants had online materials only. The trial involved 47 intervention and 45 control parent carers (97% female and 97% white) and eight facilitators (one male). DESIGN: A preplanned mixed methods process evaluation using questionnaires and checklists (during and after the intervention), qualitative interviews with participants after intervention (n=18) and a focus group with facilitators after trial. RESULTS: HPC was highly acceptable to participants and facilitators and experiences were very positive. Participants reported that the programme increased awareness of what parent carers could and could not change and their self-efficacy to engage in health-promoting behaviours. The intended mechanisms of action (social identification and peer support) matched participants' expectations and experiences. Control participants found the online-only programme flexible but isolating, as there were no opportunities to share ideas and problem solve with peers, the key function of the programme. Areas for improvement were identified for programme content, facilitator training and delivery. CONCLUSION: HPC was acceptable, well received and offers considerable potential to improve the health of parent carers. Under the pandemic, the challenge going forward is how best to maintain reach and fidelity to function while delivering a more virtual programme. TRIAL REGISTRATION NUMBER: ISRCTN151144652.National Institute for Health Research (NIHR

Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children

This is the final version. Available on open access from BMC via the DOI in this record.Availability of data and materials: The datasets analysed during the current study are available from the corresponding author on reasonable request via Open Research Exeter: https://doi.org/10.24378/exe.3423.Background Parent carers of children with special educational needs or disability are at higher risk of poor mental and physical health. The need for a tailored, peer-led group programme was raised by parent carers, who co-developed the Healthy Parent Carers programme with researchers. This study aimed to test the feasibility of programme delivery in community settings, and the feasibility and acceptability of a randomised controlled trial design. Methods Participants were individually randomised with concealed allocation to a structured group programme and access to online resources (intervention), or access to the online resources only (control). Measures of wellbeing and secondary and economic outcomes were collected before randomisation, immediately post-intervention, and 6 months post-intervention. Descriptive statistics on recruitment and attrition, demographics, attendance, and fidelity of intervention delivery were analysed with feedback on the acceptability of the trial design. Results One hundred and ninety-three parent carers expressed an interest in taking part. Ninety-two participants recruited from across six sites were randomised (47 intervention, 45 control). Lead and assistant facilitators were trained and delivered the group sessions. Sixteen (34%) participants in the intervention arm did not attend any sessions, and attendance varied across sites and sessions. One participant withdrew post-randomisation, and 83 (90%) participants completed outcome measures at the six-month follow-up. Conclusions The study demonstrated that it was feasible to deliver the programme in community settings. The number of parent carers who expressed interest signifies the need for such a programme and the feasibility of recruiting to a definitive trial. Loss to follow-up was low. Further research is needed to explore ways to reduce barriers to participation in person and assess the feasibility and acceptability of programme content and delivery for more ethnically diverse groups, and potentially using interpreters. Given the Covid-19 pandemic and delivery format feedback, there is also a need to investigate remote or blended delivery strategies. Although the results indicate that a definitive trial is feasible, programme impact would be strengthened through exploration of these uncertainties.National Institute for Health Research (NIHR

Clinical studies of chemotherapy for patients with a solitary kidney after nephroureterectomy for advanced upper urothelial transitional cell carcinoma

上部尿路移行上皮癌に対して腎尿管全摘除術を施行後, 当科で化学療法を施行した10例(13件)に検討を加えた。評価可能病変を有したのは7件で化学療法終了後の近接効果判定ではCR 2件, PR 4件, NC 1件で, 奏効率は86%であった。10例のうちすでに癌死したのが4例でその平均術後生存期間は15ヵ月, 現在生存中は6例でその平均術後観察期間は31ヵ月, 10例全例での平均術後観察期間は25ヵ月であった。副作用としては脱毛, 悪心嘔吐および全身倦怠感は13件, 口内炎は5件, 肝機能障害は4件に認められた。骨髄機能障害として白血球減少症を3件, 貧血を8件, 血小板減少症を6件に認めたBetween June, 1987 and December, 1993, ten patients with solitary kidney after total nephroureterectomy for advanced upper urothelial transitional cell carcinoma were treated with chemotherapy (M-VAC or modified M-VAC). This series comprised 6 males and 4 females between 27 and 81 years of age (mean age: 58.5 years). The site of primary lesions was the renal pelvis in one case, ureter in 5 and renal pelvis and ureter in 4. Histologically, these extripated tumors were all identified as transitional cell carcinoma, the stage being pT3 and pT4 in 9 and grade being G3 in 8 of the 10 patients. Among the 13 cases including the 3 cases of recurrence after first line chemotherapy, 7 had lesions suitable for the evaluation. Two of the 7 cases achieved complete response and four achieved partial response, resulting in an 86% response rate. Of the 10 patients, 4 died of metastasis of carcinoma and the others are still alive. The average period after operation among 10 patients was 25 months. Side effects related to this chemotherapy were as follows: general fatigue, nausea or vomiting and alopecia 100%, leucocytepenia (< or = 1, 000/mm3) 23%, anemia (RBC < or = 250 x 10(4)/mm3) 62%, thrombocytopenia (< or = 5 x 10(4)/mm3) 46%. However, nephrotoxicity in spite of solitary kidney was not noticed in any patients. From our experience, we suggest that M-VAC or modified M-VAC chemotherapy are safe against patients with a solitary kidney after nephroureterectomy for advanced transitional cell carcinoma of the upper urinary tract

Healthy Parent Carers programme: mixed methods process evaluation and refinement of a health promotion intervention

Objectives Parent carers of children with special educational needs or disability are at risk of poorer mental and physical health. In response to these needs, we codeveloped the ‘Healthy Parent Carers’ (HPC) programme. This study examined the views and experiences of participants in the HPC feasibility trial to inform programme refinement. Intervention, setting and participants HPC is a peer-led group-based intervention (supported by online materials) for primary carers of disabled children, encouraging behaviours linked with health and well-being. It was delivered by two lead and six assistant peer facilitators in six community sites (one lead and one assistant per group) in South West England over six or 12 sessions. Control participants had online materials only. The trial involved 47 intervention and 45 control parent carers (97% female and 97% white) and eight facilitators (one male). Design A preplanned mixed methods process evaluation using questionnaires and checklists (during and after the intervention), qualitative interviews with participants after intervention (n=18) and a focus group with facilitators after trial. Results HPC was highly acceptable to participants and facilitators and experiences were very positive. Participants reported that the programme increased awareness of what parent carers could and could not change and their self-efficacy to engage in health-promoting behaviours. The intended mechanisms of action (social identification and peer support) matched participants’ expectations and experiences. Control participants found the online-only programme flexible but isolating, as there were no opportunities to share ideas and problem solve with peers, the key function of the programme. Areas for improvement were identified for programme content, facilitator training and delivery. Conclusion HPC was acceptable, well received and offers considerable potential to improve the health of parent carers. Under the pandemic, the challenge going forward is how best to maintain reach and fidelity to function while delivering a more virtual programme. Trial registration number ISRCTN151144652

Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children (dataset)

Five csv files include four datasets and a codebook providing details of the main HPC_dataset_archive file. The Attendance data_archive file contains data related to attendance for those allocated to the group intervention (1=attended whole session, 2=partial attendance, 3=did not attend). The IMD_dataset_archive file contains the Index of Multiple Deprivation Deciles and scores for each participant (postcodes have been removed to protect anonymity). The PAM_data_archive file contains the dataset of scores for each participant at all three time points on the Patient Activation Measure.The article associated with this dataset is available in ORE at: http://hdl.handle.net/10871/126511This is the dataset used for the Bjornstad et al. (2021) article "Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children" published in Pilot and Feasibility Studies.National Institute for Health Research (NIHR

Healthy Parent Carers: feasibility randomised controlled trial of a peer-led group-based health promotion intervention for parent carers of disabled children

Background Parent carers of children with special educational needs or disability are at higher risk of poor mental and physical health. The need for a tailored, peer-led group programme was raised by parent carers, who co-developed the Healthy Parent Carers programme with researchers. This study aimed to test the feasibility of programme delivery in community settings, and the feasibility and acceptability of a randomised controlled trial design. Methods Participants were individually randomised with concealed allocation to a structured group programme and access to online resources (intervention), or access to the online resources only (control). Measures of wellbeing and secondary and economic outcomes were collected before randomisation, immediately post-intervention, and 6 months post-intervention. Descriptive statistics on recruitment and attrition, demographics, attendance, and fidelity of intervention delivery were analysed with feedback on the acceptability of the trial design. Results One hundred and ninety-three parent carers expressed an interest in taking part. Ninety-two participants recruited from across six sites were randomised (47 intervention, 45 control). Lead and assistant facilitators were trained and delivered the group sessions. Sixteen (34%) participants in the intervention arm did not attend any sessions, and attendance varied across sites and sessions. One participant withdrew post-randomisation, and 83 (90%) participants completed outcome measures at the six-month follow-up. Conclusions The study demonstrated that it was feasible to deliver the programme in community settings. The number of parent carers who expressed interest signifies the need for such a programme and the feasibility of recruiting to a definitive trial. Loss to follow-up was low. Further research is needed to explore ways to reduce barriers to participation in person and assess the feasibility and acceptability of programme content and delivery for more ethnically diverse groups, and potentially using interpreters. Given the Covid-19 pandemic and delivery format feedback, there is also a need to investigate remote or blended delivery strategies. Although the results indicate that a definitive trial is feasible, programme impact would be strengthened through exploration of these uncertainties. Trial registration ISRCTN, ISRCTN15144652, registered on 25 October 2018, ClinicalTrials.gov, NCT03705221, registered on 15 October 2018