Mixed-methods evaluation of a face-to-face educational intervention for health and social care professionals to deliver family-centred cancer supportive care when a parent with dependent children is at end of life.

OBJECTIVE: To deliver and evaluate an educational intervention to equip health and social care professionals (professionals) on how best to support parents at end of life with cancer concerning their dependent children (<18). METHODS: An evidence-based and theory-driven face-to-face educational intervention was developed and evaluated using three levels of Kirkpatrick's Model of Evaluation. Pre-test, post-test surveys were completed immediately before-and-after the intervention using a validated self-efficacy scale and single-item questions evaluating perceived usefulness and relevance (levels one/two). Qualitative interviews ≥ 3-months post-intervention explored if, and how the intervention impacted professionals' practice (level three). Fourteen sessions were delivered at oncology settings to 347 professionals between 2021 and 2023. Two hundred seventy four professionals completed the pre-test survey, with 239 completing the post-test survey. Fourteen professionals were interviewed between three-and 19-months post-intervention. RESULTS: Quantitative findings demonstrated a statistically significant improvement in self-efficacy post-educational intervention (p < 0.001). Qualitative data highlighted professionals gained new approaches to progress end of life conversations with parents, despite some familial resistance to sharing the reality of the situation with children. Positive intervention content shaping clinical practice included the bereaved parent's lived experience, communication framework and roleplay videos. Some professionals considered a booster session and opportunities to practice conversations necessary to further consolidate learning into practice. CONCLUSIONS: Evidence and theory-driven education can positively impact professionals' provision of family-centred cancer care. Future studies should explore the impact of this educational intervention on familial outcomes. Alongside a sustainable delivery of this intervention, advanced communication skills programmes should incorporate parent-child end of life conversations.

'I didn't know what was in front of me'-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.

Immediate bereavement experiences when a parent of dependent children has died of cancer: Funeral directors' perspectives.

When a parent of dependent children dies, families are often unsure if and how children could be part of the immediate bereavement period. Children excluded can be more susceptive to negative outcomes. In-depth interviews explored funeral directors' (N = 23) experiences of providing a service to families in the immediate bereavement period, when a parent dies from cancer. Findings highlighted funeral directors can have an important role in guiding families through the distressing immediate bereavement period. Recommendations are discussed surrounding a pastoral role of the funeral director in the immediate bereavement period.

Providing care to parents dying from cancer with dependent children: Health and social care professionals' experience.

OBJECTIVE: Parents often feel ill-equipped to prepare their dependent children (<18 years old) for the death of a parent, necessitating support from professionals. The aim of this study is to explore health and social care professionals' (HSCPs) experiences and perceptions of providing supportive care to parents regarding their children, when a parent is dying from cancer. METHODS: Semi-structured qualitative interviews were conducted with 32 HSCPs, including nurses, allied health professionals, social workers and doctors from specialist or generalist roles, across acute or community sectors. RESULTS: HSCPs' perceptions of the challenges faced by many families when a parent is dying from cancer included: parental uncertainties surrounding if, when and how to tell the children that their parent was dying, the demands of managing everyday life, and preparing the children for the actual death of their parent. Many HSCPs felt ill-equipped to provide care to parents at end of life concerning their children. The results are discussed under two themes: (1) hurdles to overcome when providing psychological support to parents at end of life and (2) support needs of families for the challenging journey ahead. CONCLUSIONS: There appears to be a disparity between HSCPs' awareness of the needs of families when a parent is dying and what is provided in practice. HSCPs can have a supportive role and help equip parents, as they prepare their children for the death of their parent. Appropriate training and guideline provision could promote this important aspect of end of life care into practice.

'Don't forget the children': a qualitative study when a parent is at end of life from cancer.

PURPOSE: Preparation for end of life is one of the greatest challenges faced by parents with cancer who have dependent children (< 18 years old), with requirement for support from professionals. The aim of this study is to explore how parents can be best supported in relation to their children, when a parent is at end of life from cancer. METHODS: This is an interpretive qualitative study, using 79 semi-structured interviews with parents at end of life (n3), bereaved parents (n21), health and social care professionals (HSCPs) (n32) and funeral directors (n23). Data were analysed thematically and triangulated. RESULTS: Parents are central to preparing their children for the death of a parent. Striving for everyday ordinariness, maximising social networks, maintaining hope and making preparations for the future are helpful for families when a parent is at end of life. Most HSCPs were unaware of the challenges faced by parents at end of life, and psychosocial support was often left outside the caring realm. As a result, funeral directors noted complexities faced by the families after the death. Results are discussed under four themes: (1) communication with the children as a process, (2) coping throughout the unfolding end of life experience, (3) tension and complexities at end of life and (4) preparing for the future. CONCLUSIONS: Parents should be reassured that by involving the children early in the end of life experience when the ill-parent is 'well enough' to parent enables them to be actively involved in supporting their child through one of the greatest life changing event. A number of recommendations are discussed for professionals.

'Living in parallel worlds' - bereaved parents' experience of family life when a parent with dependent children is at end of life from cancer: A qualitative study.

BACKGROUND: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. AIM: To explore bereaved parents' experience and needs for families when a parent is at end of life from cancer with dependent children. DESIGN: In-depth, semi-structured qualitative interviews were conducted with 21 bereaved mothers and fathers, identified from the general public, a family support service and hospice. Data were analysed thematically. RESULTS: Parents often live in 'parallel worlds' throughout the end of life period. In one world, 'living in the moment', cherishing the ordinariness of family life, remaining hopeful treatment will prolong life, whilst adapting as the illness unfolds. The other world presents as 'intermitted glimpses that death is approaching', shadowed with painful emotional concerns surrounding their children and the future. At the end, death rapidly approaches, characterised as suddenly 'falling off the cliff'; placing significant demands on the well-parent. CONCLUSIONS: Amidst challenges, clinicians should provide parents with clear information surrounding a poor prognosis, so families can plan and prepare for parental death. There is a need for healthcare professionals to engage, encourage and equip parents, as they prepare their children throughout the end of life experience for the inevitable death of a parent.

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.

Quality of life issues in head and neck cancer.

UNLABELLED: Head and neck cancer (HNC) constitutes approximately 3% of all cancers in the UK, with in excess of 8500 new cases annually. Management of HNC depends on site, extent, histology, previous medical history and patient choice. A multidisciplinary approach is required to optimize patient wellbeing, owing to the significant functional and psychosocial implications that can impact on quality of life. Members of the dental team, to include the general dental practitioner, have a key role in patient care; therefore the dental team should be knowledgeable in the short-term and longer-term implications and how this impacts on quality of life. CLINICAL RELEVANCE: This article offers the dental team with an overview of how HNC and the various treatments, such as surgery, radiotherapy and chemotherapy, impact upon quality of life, both in the short-term and longer-term.

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.

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

PURPOSE: Patients living with head and neck lymphoedema (HNL) after completion of head and neck cancer (HNC) often can experience long-term functional challenges and overall poorer health-related quality of life (HRQOL). This systematic review aims to explore components of effective HNL interventions through identification and synthesising literature on existing HNL management interventions. METHODS: Five electronic databases (MEDLINE via Ovid and PubMed, CINAHL, CENTRAL, and Scopus) were systematically searched using Medical Subject Headings and free text, as well as citation tracking and Google Scholar for grey literature. RESULTS: A total of 1910 studies were screened, with 12 studies meeting the inclusion criteria. Findings indicated vast heterogeneity within HNL interventions. Patients' adherence to intervention strategies was reported as low and partially adhered to, particularly at home. This impacted on function domains and overall HRQOL during the post-treatment HNC phase, as well as further increasing the demands placed on healthcare professionals. CONCLUSIONS: Synthesis of the research findings highlighted a need to provide and educate patients with individualised HNL self-management intervention strategies. Promoting adherence was reported as being essential, with self-efficacy and behaviour change techniques being emphasised as a critical element to enhance motivation and therefore effective intervention delivery. Further work is important to address barriers to adherence and promote both motivation and behaviour change, to develop individualised self-management interventions for this cancer population. IMPLICATIONS FOR CANCER SURVIVORS: The findings from this systematic review will provide guidance in the development and delivery of individualised self-management HNL interventions for patients who have completed HNC treatment.

A Systematic Review of Educational Interventions to Equip Health and Social Care Professionals to Promote End-of-Life Supportive Care when a Parent with Dependent Children is Dying with Cancer.

OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals when delivering end of life supportive care for parents dying with cancer who have dependent children. DATA SOURCES: A mixed-methods systematic review was undertaken. Six electronic database were searched from their inception until September 2023 (Medline OVID, CINAHL, EMBASE, PsycINFO, Web of Science, and ERIC), supplemented by citation chaining, grey literature searches using Google Advanced Search and relevant professional bodies. Quality assessment was conducted independently by two researchers on the included studies. A convergent integrated approach was utilised for data synthesis. CONCLUSION: The review identified two educational interventions; highlighting a dearth of training opportunities to equip health and social care professionals to provide supportive care to families when a parent is at end of life with cancer. Despite health and social care professionals reported need and desire for upskilling in this area of clinical practice, there is a severe lack of evidence-based educational interventions. It is imperative that effective educational interventions are made accessible to professionals. IMPLICATIONS FOR NURSING PRACTICE: There is an imminent need for robust educational interventions to be developed, as health and social care professionals often lack the knowledge, skills and confidence on how best to support families when a parent of dependent children is at end of life. Health and social care professionals engagement with high-quality, evidence-based and theory-driven educational interventions has the potential to impact professionals' provision of family-centred cancer care at end of life. This could lead to better mental and physical outcomes for the whole family at end of life and in bereavement.

Experiences of cancer patients in receiving dietary advice from healthcare professionals and of healthcare professionals in providing this advice-a systematic review.

PURPOSE: This systematic review investigated qualitative and quantitative studies exploring patients and healthcare professionals' (HCP) experience of nutrition care throughout the cancer journey. METHODS: Five databases were systematically searched for studies reporting on patient and healthcare professionals' experience of nutrition advice. RESULTS: Fifteen studies including 374 patients and 471 healthcare professionals were included. Findings indicate that patients desire more specific nutrition advice supported by members of the multidisciplinary team and delivered in appropriate and understandable language. Healthcare professionals have highlighted a lack of time, funding, dietetic roles, and knowledge as barriers to integrating nutrition as a standard part of cancer care. Five themes were identified (current provision of nutrition advice, optimal provision of nutrition advice, tension between patient values and nutritional or HCP priorities, providing evidence-based nutrition care, and practical barriers to nutrition advice provision). CONCLUSIONS: Further work is essential to better understand and address identified barriers and improve the provision of nutrition advice to this population. IMPLICATIONS FOR CANCER SURVIVORS: Findings from this review will guide the delivery of nutrition advice for cancer survivors.

Parent's with incurable cancer: 'Nuts and bolts' of how professionals can support parents to communicate with their dependent children.

OBJECTIVE: Parents with incurable cancer are often uncertain how, what and when is best to tell their children about their poor prognosis and prepare them for the actual death. Despite parents' desire and need for support from health and social care professionals (HSCPs), this is often lacking. HSCPs feel ill-equipped, identifying a need for an evidence-based communication framework for professionals to use in practice, promoting parent-child communication at end of life. METHODS: A systematic process, involving a systematic review and data from 76 semi-structured, face-to-face qualitative interviews from three participant populations, including HSCPs (n = 32), bereaved parents (n = 21) and funeral directors (n = 23) were triangulated. This informed the development of the 'Talking, Telling and Sharing': End of life framework (6 W Grid), guided by an expert group. RESULTS: An evidence-based, theory-driven communication framework has been developed. This provides a mechanism for HSCPs to proactively and directly engage with patients, addressing their parent-child communication concerns. CONCLUSION: Clear, evidence-based communication frameworks can enhance patient-provider communication in practice, particularly around sensitive and complex issue. PRACTICE IMPLICATIONS: There is a need for HSCPs to encourage parents to start these difficult conversations soon after receiving the poor prognosis, to avoid crisis management when the ill-parent is actively dying or throughout the immediate bereavement period.

An Economic Evaluation Supported by Qualitative Data About the Patient Concerns Inventory (PCI) versus Standard Treatment Pathway in the Management of Patients with Head and Neck Cancer.

BACKGROUND: The head and neck cancer (HNC) Patient Concerns Inventory (PCI) is a condition-specific prompt list that allows patients to raise concerns to cancer consultants that otherwise might be overlooked. OBJECTIVE: This is the first economic evaluation of the PCI in patients with HNC investigating the costs and effects to the health service of not prioritising certain treatment pathways in addition to the primary cancer pathway. Additional costs can be accrued due to delayed referral to other appropriate services, e.g. hospital dentist. Economic evidence could influence future policy direction in this area globally. METHODS: Alongside a 3-year clustered randomised controlled trial, an economic evaluation was undertaken with Client Service Receipt Inventory data collected at three different time points (baseline and 6 and 12 months post-baseline). Patients were identified by a multidisciplinary team at the trial clinics. This economic analysis compared the PCI intervention versus the non-PCI treatment pathway. A deterministic and probabilistic sensitivity analysis was conducted to investigate the cost per quality-adjusted life-year (QALY) gain of the PCI versus non-PCI intervention treatment pathways. Qualitative data were also collected from seven consultants to triangulate findings from the economic evaluation. RESULTS: The analysis used data from 191 patients (66% of the full trial sample). The PCI inventory was low cost, at just over £13 per participant. The PCI intervention was cost effective and also cost saving, with an incremental cost difference of £295.91 over the 12-month follow-up period. The QALY values were higher in the PCI intervention strategy, with a value of 0.79, whereas the non-PCI group had a value of 0.76, thus the PCI intervention was dominant. The sensitivity analysis showed that, at a willingness-to-pay threshold of £20,000 per QALY gained, the probability of being cost effective was 0.85 (95% confidence interval [CI] 0.80-0.83). Qualitative results showed that consultants using the PCI reported an enhanced awareness of patients' overall post-treatment needs. DISCUSSION: The PCI provided an effective means to conduct clinical consultations by avoiding unnecessary healthcare costs and focussing on aspects of care most important to patients. The cost per QALY gain was within the National Institute for Health and Care Excellence guideline threshold. The economic evaluation showed that the PCI intervention strategy was dominant and therefore cost saving to the national health service (NHS) and was more effective in terms of treatment. CONCLUSION: The PCI appears to be a low-cost intervention that generates a cost-effective benefit to patients from a NHS perspective if rolled out as part of routine care. Qualitative evidence has shown that the use of the PCI is supported by consultants in routine practice. TRIAL REGISTRATION: Clinical Trials Identifier: NCT03086629.

Prevalence and predictors of burnout and work-life balance within the haematology cancer nursing workforce.

PURPOSE: The effects of burnout can have serious consequence for individual nurse's, patients and healthcare organisations. The aim of this study was to assess prevalence and predictors of burnout and work-life balance amongst haemato-oncology nurses. METHODS: This study employed a cross-sectional survey design. Haematology cancer nurses attending a 2-day conference in Ireland, during Oct 2019 were recruited. Anonymised data were collected on: 1) socio-demographics and occupational variables, 2) burnout using Maslach Burnout Inventory and 3) satisfaction with work-life balance. RESULTS: There was an 80.4% survey completion rate (n = 78 of 97). One-third of haemato-oncology nurses reported high levels of emotional exhaustion, with an additional 46% experiencing moderate levels. Despite this, 64% of nurses highlighted a moderate or high level of personal accomplishment. Demographics such as <40yrs old, unmarried, working ≥25hrs per week and having 6-10 years' experience in haemato-oncology, all showed trends towards increased burnout, although none reached statistical significance. Over half (58%) surveyed were dissatisfied with their work-life balance. Nurses with dependent children had statistically significant poorer work-life balance scores. In addition, one-third reported they did not receive adequate support or reasonable adjustments from their organisation, with inpatient nurses finding this particularly challenging. RELEVANCE TO CLINICAL PRACTICE: Taking into consideration the high levels of burnout, healthcare organisations should have a responsibility to teach approaches of stress management, self-care and foster resilience within their workforce. Oncology nurses with dependent children, working in in-patient settings, have identified a need for greater flexibility with working conditions, to improve work-life balance.

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.

Development and evaluation of a problem-focused psychosocial intervention for patients with head and neck cancer.

GOALS OF THE WORK: Patients with head and neck cancer have complex needs that affect many basic functions of life and contribute to substantial psychosocial problems. The aim of this study was to evaluate the effectiveness of a problem-focused intervention for patients with psychosocial dysfunction who had completed treatment for head and neck cancer. PATIENTS AND METHODS: Using a quasi-experimental design, 54 participants who were above pre-determined cutoff points for psychosocial dysfunction (hospital and depression scale, work and social adjustment scale) were given the opportunity to self-select into either the experimental group for the psychosocial intervention programme which was delivered in an individualised format, with bibliotherapy as an adjunct, or the control group for usual care. MAIN RESULTS: Analysis of covariance results demonstrated a reduction in psychological distress (anxiety, p = 0.001; depression, p = 0.005), improving social functioning (p = 0.048) and quality of life scores (p = <0.05) for the experimental group, all of which were sustained into the 3-month follow-up period. No such improvements were evident for the control group. CONCLUSIONS: This study suggests that head and neck cancer patients with post-treatment psychosocial dysfunction can benefit from a problem-focused psychosocial intervention. Such evidence can inform practice, policy and future research, aimed at improving post-treatment quality of life for patients with head and neck cancer.

Long-term impact of living with an obturator following a maxillectomy: A qualitative study.

OBJECTIVES: To explore the long-term impact for patients living with an obturator prosthesis, following a maxillectomy for a head and neck neoplasm. METHODS: A qualitative approach was employed, using semi-structured interviews. A purposive sample of eight men and four women, living with an obturator prosthesis for at least five years, were recruited. Interviews were digitally recorded and transcribed. Using thematic analysis, two researchers analysed the data. RESULTS: The data were categorised into four themes: 1. Preparedness for living with an obturator, 2. Impact of living with an obturator - what changes to expect, 3. Stability and retention of the obturator, and 4. Coping strategies to aid adjustment. Long-term effects of living with an obturator spanned many aspects of life to include: chewing and eating, speaking, dealing with nasal leakage and altered body image, employment and intimacy issues, along with embarrassment during social encounters. Optimal retention and stability of the obturator, as perceived by the patient, lead to improved social confidence and engagement. The emotional impact varied greatly on peoples' lives. CONCLUSIONS: Patients experiencing the greatest long-term challenges had larger defects, were of employment age and had not returned to work. Gaining an improved understanding of the psychology of coping overtime is clearly important, as this can inform interventions to facilitate adjustment for those who are emotionally struggling. Furthermore, the findings of this study could inform the design of a communication tool to facilitate shared-decision making and aid preparedness for living with an obturator following a maxillectomy. CLINICAL SIGNIFICANCE: The multidisciplinary head and neck team should provide patients with detailed pre-operative information, including potential effects on social, work and personal relationships. The restorative dentistry team has a pivotal role in the long-term management of these patients, as obturators have a finite lifespan with ongoing maintenance necessary to promote optimal retention and stability.