‘<i>I didn’t know what was in front of me</i>’ – bereaved parents’ experience of adapting to life when a co-parent of dependent children has died with cancer

OBJECTIVE: It is not clear how the bereaved parent navigates life with the children after a co‐parent has died. The objective of this study is to explore bereaved parents' experience of managing life when a co‐parent of dependent children has died with cancer. METHODS: Twenty‐one in‐depth interviews were conducted with bereaved parents when a co‐parent died with cancer. Data were analysed thematically. RESULTS: Bereaved parents highlighted how their children was their key focus after the death of a co‐parent with cancer, as they effortfully strived to be a ‘perfect parent’. While some bereaved parents struggled to adapt to the role as a sole parent, others described the importance of maximising social networks to help with the practical aspects of parenting. However, most bereaved parents described intense feelings of loneliness as they navigated parenting alone. To help navigate this post‐bereavement period, parents considered it important for their children to openly talk about the deceased parent. Also, meeting others who have experienced similar situations was helpful for the bereaved parent and children, providing hope for the future. Results are discussed under two themes: (1) adapting to life without the parent, and (2) a desire to keep the memory alive of the parent that died with cancer. CONCLUSIONS: Bereaved parents should be encouraged to practice self‐care when a co‐parent has died from cancer so they can appropriately meet the needs of their children. Bereaved parents should be reassured that showing emotion in front of the children is helpful and could facilitate better grief experiences for the whole family

Evaluating the effects of lymphoedema management strategies on functional status and health-related quality of life following treatment for head and neck cancer: Protocol for a systematic review

Introduction/Background: Patients living with and after head and neck cancer often experience treatment-related consequences. Head and neck lymphoedema can be described as a common chronic side effect of head and neck cancer and recognised as a contributing factor to impairment of functional status, symptom burden and health-related quality of life. The effects of head and neck lymphoedema can limit patients’ involvement in daily activities and alter their appearance, increasing symptom burden and negatively affecting health-related quality of life. Objective: The protocol outlines the rationale and aims for the systematic review. The main aim of the systematic review is to identify and systematically synthesise the literature on the effectiveness of head and neck lymphoedema management strategies, on both function status and health-related quality of life for head and neck cancer patients. Methods and analysis: This protocol will be conducted according to the PRISMA-P guidelines. Electronic databases will be systematically searched using MEDLINE via Ovid and PubMed, CINAHL, Cochrane Central Register of Controlled Trials and Scopus. Inclusion criteria will involve intervention studies for head and neck lymphoedema management, English language, and adult human participants following head and neck cancer. The software Covidence will be used to export, manage, and screen results. Risk of bias and quality will be assessed in included studies using the Cochrane Handbook of Systematic Reviews of Intervention risk of bias and GRADE tools. A meta-analysis will be performed if there are sufficient homogenous studies. Alternatively, a narrative synthesis will be completed on study findings. Ethics and dissemination: No ethical approval is required as the study does not involve patient and public involvement. The findings of the review will be disseminated in conferences and submitted for approval to be published in a peer-reviewed journal. Prospero registration number: CRD42022378417. (S1 Appendix)

Factors that affect quality of life for older people with head and neck cancer: A systematic review

Purpose: Quality of life is a critical aspect in the management of older head and neck cancer patients. It needs to be considered alongside survival benefit, treatment burden, and longer-term outcomes. The purpose was to undertake a systematic review of empirical peer-reviewed studies with a primary focus on factors impacting quality of life for older head and neck cancer patients. Methods: A systematic review, searching 5 electronic databases (PsychoINFO, MEDLINE, CINHAL, Embase, and Scopus) using PRISMA methodology was conducted. Data was appraised using the Newcastle-Ottawa scale and a narrative synthesis performed. Results: Only 10 papers fulfilled the inclusion criteria. Two main themes emerged: 1) Impact of head and neck cancer on quality of life domains and 2) quality of life in treatment decision-making. Conclusions: In an era of progressive personalised care, there is an evident need for more qualitative and quantitative studies focusing on quality of life for older head and neck cancer patients. However, older head and neck cancer patients experience notable differences, especially with poorer physical functioning and greater eating and drinking challenges. Quality of life impacts older patients decision-making, treatment planning and intensifies post-treatment support

Challenges and support needs of parents and children when a parent is at end of life: A systematic review

Background: Preparing children for the death of a parent is challenging. Parents are often uncertain if and how to communicate and support their children. Many parents feel it is protecting their children by not telling them about the prognosis. Children less prepared for parental death from a terminal illness are more susceptive to later adversities. To facilitate coping and moderate for such adversities, there is a need to gain insight and understand the experience and challenges confronted by families. Aim: This review synthesised evidence on the experiences of parents and children when a parent is at end of life to discern their challenges, support needs and factors that facilitated good practice. Design: Mixed-methods systematic review. Data sources: Four electronic databases (CINAHL, PubMed, PsycINFO and Ovid MEDLINE) using MeSH terms and word searches in October 2018. Studies were not limited by year of publication, language or country. Grey literature searches were also completed on Google Scholar and OpenGrey. Results: In all, 7829 records were identified; 27 qualitative and 0 quantitative studies met the inclusion criteria. Eight descriptive themes were identified, further categorised into two broad themes: (1) barriers and facilitators in sharing the news that a parent is dying and (2) strategies to manage the changing situation. Conclusion: Lack of understanding in relation to the parent’s prognosis, denial and feeling ill-equipped were suggested as barriers for parents to share the news with their children. Engagement with social networks, including extended family relatives and peers, and maintaining routines such as attending school were suggested supportive by parents and children. Findings are limited primarily to White, middle-class two-parent families. A number of areas for future research are identified.</p

Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients : baseline results in a cluster preference randomised controlled trial

Funding: RfPB on behalf of the NIHR (PB-PG-0215-36047). This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0215-36047).Purpose The main aim of this paper is to present baseline demographic and clinical characteristics and HRQOL in the two groups of the Patient Concerns Inventory (PCI) trial. The baseline PCI data will also be described. Methods This is a pragmatic cluster preference randomised control trial with 15 consultant clusters from two sites either ‘using' (n = 8) or ‘not using’ (n = 7) the PCI at a clinic for all of their trial patients. The PCI is a 56-item prompt list that helps patients raise concerns that otherwise might be missed. Eligibility was head and neck cancer patients treated with curative intent (all sites, stage of disease, treatments). Results From 511 patients first identified as eligible when screening for the multi-disciplinary tumour board meetings, 288 attended a first routine outpatient baseline study clinic after completion of their treatment, median (IQR) of 103 (71–162) days. At baseline, the two trial groups were similar in demographic and clinical characteristics as well as in HRQOL measures apart from differences in tumour location, tumour staging and mode of treatment. These exceptions were cluster (consultant) related to Maxillofacial and ENT consultants seeing different types of cases. Consultation times were similar, with PCI group times taking about 1 min longer on average (95% CL for the difference between means was from − 0.7 to + 2.2 min). Conclusion Using the PCI in routine post-treatment head and neck cancer clinics do not elongate consultations. Recruitment has finished but 12-month follow-up is still ongoing.Publisher PDFPeer reviewe

Improving quality of life through the routine use of the patient concerns inventory for head and neck cancer patients: main results of a cluster preference randomised controlled trial

Funding: UK National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0215-36047).Purpose The patient concerns inventory (PCI) is a prompt list allowing head and neck cancer (HNC) patients to discuss issues that otherwise might be overlooked. This trial evaluated the effectiveness of using the PCI at routine outpatient clinics for one year after treatment on health-related QOL (HRQOL). Methods   A pragmatic cluster preference randomised control trial with 15 consultants, 8 ‘using’ and 7 ‘not using’ the PCI intervention. Patients treated with curative intent (all sites, disease stages, treatments) were eligible. Results   Consultants saw a median (inter-quartile range) 16 (13–26) patients, with 140 PCI and 148 control patients. Of the pre-specified outcomes, the 12-month results for the mean University of Washington Quality of Life (UW-QOLv4) social-emotional subscale score suggested a small clinical effect of intervention of 4.6 units (95% CI 0.2, 9.0), p = 0.04 after full adjustment for pre-stated case-mix. Results for UW-QOLv4 overall quality of life being less than good at 12 months (primary outcome) also favoured the PCI with a risk ratio of 0.83 (95% CI 0.66, 1.06) and absolute risk 4.8% (− 2.9%, 12.9%) but without achieving statistical significance. Other non-a-priori analyses, including all 12 UWQOL domains and at consultant level also suggested better HRQOL with PCI. Consultation times were unaffected and the number of items selected decreased over time. Conclusion   This novel trial supports the integration of the PCI approach into routine consultations as a simple low-cost means of benefiting HNC patients. It adds to a growing body of evidence supporting the use of patient prompt lists more generally.Publisher PDFPeer reviewe

Improving quality of life through the routine use of the Patient Concerns Inventory for head and neck cancer patients: a cluster preference randomized controlled trial

This trial is funded by the RfPB on behalf of the NIHR (PB-PG-0215-36047).Background: The consequences of treatment for Head and Neck cancer (HNC) patients has profound detrimental impacts such as impaired QOL, emotional distress, delayed recovery and frequent use of healthcare. The aim of this trial is to determine if the routine use of the Patients Concerns Inventory (PCI) package in review clinics during the first year following treatment can improve overall quality of life, reduce the social-emotional impact of cancer and reduce levels of distress. Furthermore, we aim to describe the economic costs and benefits of using the PCI. Methods: This will be a cluster preference randomised control trial with consultants either ‘using’ or ‘not using’ the PCI package at clinic. It will involve two centres Leeds and Liverpool. 416 eligible patients from at least 10 consultant clusters are required to show a clinically meaningful difference in the primary outcome. The primary outcome is the percentage of participants with less than good overall quality of life at the final one-year clinic as measured by the University of Washington QOL questionnaire version 4 (UWQOLv4). Secondary outcomes at one-year are the mean social-emotional subscale (UWQOLv4) score, Distress Thermometer (DT) score ≥ 4, and key health economic measures (QALY-EQ-5D-5 L; CSRI). Discussion: This trial will provide knowledge on the effectiveness of a consultation intervention package based around the PCI used at routine follow-up clinics following treatment of head and neck cancer with curative intent. If this intervention is (cost) effective for patients, the next step will be to promote wider use of this approach as standard care in clinical practice. Trial registration: 32,382. Clinical Trials Identifier, NCT03086629. Protocol: Version 3.0, 1st July 2017.Publisher PDFPeer reviewe

Experience of parents with head and neck cancer who are caring for young children

Aim.- This paper is a report of a study exploring the experience and support needs of parents with head and neck cancer, who are also caring for their young children. Background.- The incidence of head and neck cancer is steadily rising in the younger age groups (under 50 years). As a direct consequence, more parents of young children are being diagnosed with this cancer. Methods.- Using a qualitative descriptive design, 12 patients with young children under the age of 16 were interviewed during 2008. The data were analysed using cognitive mapping. Findings.- At diagnosis, parents experienced the fear of missing milestones in the life of their children and fear of telling the children about their diagnosis. During treatment, parents' inevitable stays in hospital led to separation from the children and the need to prepare their children for the first hospital visit. Parents experienced many debilitating effects of treatment, which had an impact on family activities, especially those that involved eating. There was often changing roles within the family. After treatment, the experience of living with cancer for parents resulted in the desire to get back to day-to-day life. Parents had an increased appreciation of life but were also living with uncertainties. The most important support networks for parents were their spouse, family and friends. Conclusion.- Oncology nurses are in an excellent position to offer support and guidance to parents with cancer who have children, and should encourage them to explore with the family the best way of managing role change during treatment.sch_nur66pub4169pub