Risk factors associated with the development of osteoradionecrosis (ORN) in Head and Neck cancer patients in Ireland: A 10-year retrospective review.

BACKGROUND AND PURPOSES: To assess osteoradionecrosis (ORN) incidence in a population of Irish Head and Neck cancer (HNC) patients, and assess precipitating factors that may contribute to ORN development to aid prevention. MATERIALS AND METHODS: Review of 1050 HNC patients attending the Dental Oncology Clinic, CUDSH between 2010 and 2021 identified 47 cases of ORN. Medical, dental and radiotherapy records of these forty-seven patients were retrospectively reviewed. Patient-, tumour-, and treatment-related variables were investigated in association with osteoradionecrosis development. Analysis conducted using SPSS, Pearson's Chi-square test (p < 0.05), and ordinal regression model. RESULTS: ORN incidence was 4.4 %. Median time from radiotherapy (RT) to ORN development was 9.5 months (range 1-98.5 months). ORN development within the mandibular surgical site was significant (p <.001), presenting at a higher Notani grade (p =.002), in mid-mandibular body region (p =.028), at radiation doses ≥ 60 Gy (p =.035), due to induced causes (p =.029), and without resolution (p =.019). CONCLUSION: This is the first retrospective study of ORN in HNC patients in Ireland over 10-year period. ORN incidence was extremely low (4.4%). As patients reported high smoking/alcohol use and poor dental attendance pre-diagnosis, this suggests intensive dental intervention pre/post-diagnosis contributed to low ORN rates. Mandibular surgery pre-RT increased risk of developing ORN at the surgical site. Therefore, we recommend future treatment planning should contour the surgical site, designating it an organ at risk (OAR), assigning a dose constraint, where oncologically possible, with emphasis on reducing the hot-spot to this region; findings reinforce importance of life-long expert dental care to reduce ORN incidence.

Proteomic Identification of Saliva Proteins as Noninvasive Diagnostic Biomarkers.

Many biomedically relevant biomarkers are proteins with characteristic biochemical properties and a relatively restricted subcellular distribution. The comparative and mass spectrometry-based proteomic analysis of body fluids can be particularly instrumental for the targeted identification of novel protein biomarkers with pathological relevance. In this respect, new research efforts in biomarker discovery focus on the systematic mapping of the human saliva proteome, as well as the pathobiochemical identification of disease-related modifications or concentration changes in specific saliva proteins. As a product of exocrine secretion, saliva can be considered an ideal source for the biochemical identification of new disease indicators. Importantly, saliva represents a body fluid that is continuously available for diagnostic and prognostic assessments. This chapter gives an overview of saliva proteomics, including a discussion of the usefulness of both liquid chromatography and two-dimensional gel electrophoresis for efficient protein separation in saliva proteomics.

Analysis of the Saliva Proteome Using 2D-DIGE.

Saliva is now an established biofluid with a number of important applications in use across research and clinical settings. Saliva contains an assortment of biomolecules, including proteins, metabolites, RNA, DNA, and microorganisms. Numerous biomolecules enter saliva from the blood by passing through the intercellular spaces, reflecting the physiological state of the body. Saliva can be collected directly or using one of the numerous devices/systems that are available, each of which has its own specific applications. The identification and classification of salivary biomolecules, using increasing advanced omics approaches, have contributed to the reality that saliva is a creditable diagnostic fluid for oral and systemic diseases.

Barriers to accessing psycho-oncological support in head and neck cancer: A qualitative exploration of healthcare professionals' perspectives.

PURPOSE: Disease- and treatment-related consequences in Head and Neck Cancer (HNC) can result in psychological issues for which specialist psychological support, dubbed psycho-oncology, is recommended. Health and Social Care Professionals (HSCPs) function as a crucial link between survivors and these services, through onward referral pathways. However, little is known about these HSCPs' perspectives on barriers to accessing psycho-oncology in HNC. The current study sought to investigate such perspectives. METHODS: Eleven HSCPs from national cancer centres across Ireland were recruited using purposive sampling. A qualitative, cross-sectional research design was implemented utilising virtual semi-structured interviews. Interviews were audio-recorded, transcribed, and analysed using inductive, reflexive thematic analysis. RESULTS: The researcher identified four themes relating to barriers to psycho-oncology access: Lack of Access and Perceived Elitism in Onward Referral; Communication Barriers; Stigma Associated with Mental Illness and Psychological Services, and Inadequate Signposting and Advertising of Existing Psycho-Oncology Services. These findings indicate that HSCPs face multiple barriers when attempting to refer HNC survivors to psycho-oncology services. Some of these barriers relate to survivors, others to HSCPs themselves, and some to professionals within psycho-oncology services. CONCLUSIONS: By removing barriers in onward referral faced by HSCPs, HNC survivors may more readily link in with pre-existing psycho-oncology services in the future. The following may assist with removing such barriers: increased inter-professional dialogue between HSCPs and psycho-oncology services and communication skills training; mental health stigma reduction campaigns targeted at survivors, HSCPs, and wider society; and increased signposting of available psycho-oncology services and in-service training for HSCPs.

Teaching acute hospital staff and students about patient flow.

Good patient flow in an acute hospital is concerned with ensuring patients experience minimal delays throughout the hospital journey, from the emergency department to the wards, outpatients and to a suitable discharge destination. Good flow requires effective processes, staff buy-in and staff education. This study aimed to explore ways in which this topic is currently taught in an Irish acute hospital group. Participants were recruited to engage in semi-structured interviews about their experience of teaching patient flow. Following qualitative data analysis using a structured analysis guide, five main themes were identified: current methods, unstructured nature of teaching, frustration with frequency, dissemination of teaching/learning and opportunities for improvement. Recommendations from this study could be used to support a formalised approach to teaching this topic in the future. The use of the Teaching for Understanding framework and Universal Design for Learning principles are strongly advocated to support the development of a nationwide module, to structure the topics to be taught and provide guidance on how to effectively and efficiently teach this topic in Ireland.

Health literacy impacts self-management, quality of life and fear of recurrence in head and neck cancer survivors.

PURPOSE: Little is known about whether health literacy is associated with affects certain key outcomes in head and neck cancer (HNC) survivors. We investigated (i) the socio-demographic and clinical profile of health literacy and (ii) associations among between health literacy and self-management behaviours, health-related quality of life (HRQL) and fear of recurrence (FoR) in HNC survivors. METHODS: A population-based survey was conducted in Ireland. Health literacy was assessed using a validated single-item question. Socio-demographic, clinical and psychosocial outcome variables (FoR, self-management behaviours, HRQL) were collected. Multivariable linear regression was performed to estimate associations between health literacy and each psychosocial outcome. RESULTS: Three hundred ninety-five (50%) individuals responded to the survey. Inadequate health literacy was evident among 47% of the sample. In adjusted models, HNC survivors with inadequate health literacy had significantly lower levels of self-management behaviours in the domains of health-directed behaviour, positive and active engagement in life, self-monitoring and insight, constructive attitudes and approaches and skills and technique acquisition. Inadequate health literacy was independently associated with lower functional well-being and HNC disease-specific HRQL. FoR was also significantly higher among those with inadequate health literacy. CONCLUSIONS: HNC survivors with inadequate health literacy have lower levels of self-management behaviours, lower functional HRQL and increased FoR compared to those with adequate health literacy. IMPLICATIONS FOR CANCER SURVIVORS: Clinicians, healthcare providers and those developing interventions should consider how inadequate health literacy among HNC survivors might affect post-treatment outcomes when developing services and providing support for this group.

Cancer-related financial hardship among head and neck cancer survivors: Risk factors and associations with health-related quality of life.

OBJECTIVE: Cancer survivors are susceptible to financial hardship. In head and neck cancer (HNC) survivors, we investigated (a) predictors for cancer-related financial hardship and (b) associations between financial hardship and health-related quality of life (HRQoL). METHODS: We conducted a cross-sectional study in HNC survivors identified from the National Cancer Registry Ireland. HRQoL was based on the Functional Assessment for Cancer Therapy General (FACT-G) plus Head and Neck Module (FACT-HN). Objective cancer-related financial hardship (financial stress) was assessed as household ability to make ends meet due to cancer and subjective financial hardship (financial strain) as feelings about household financial situation due to cancer. Modified Poisson regression was used to identify predictors for financial hardship. Bootstrap linear regression was used to estimate associations between hardship and FACT domain scores. RESULTS: Pre-diagnosis retirement (relative risk [RR] 0.50, 95% confidence interval [CI] 0.37-0.67), pre-diagnosis financial stress (RR 1.85, 95% CI 1.58-2.15), and treatment were significantly associated with objective financial hardship. Predictors of subjective financial hardship were similar: aged greater than or equal to 65 years, pre-diagnosis financial stress, and treatment. Participants with objective financial hardship reported significantly lower physical (coefficient -3.45, 95% CI -4.39 to -2.44), emotional (-2.01, 95% CI -2.83 to -1.24), functional (-2.56, 95% CI -3.77 to -1.33) and HN-specific HRQoL (-3.55, 95% CI -5.04 to -2.23). Physical, emotional, and functional HN-specific HRQoL were also significantly lower in participants with subjective financial hardship. CONCLUSION: Cancer-related financial hardship is common and associated with worse HRQoL among HNC survivors. This supports the need for services and supports to address financial concerns among HNC survivors.

Investigating the impact of self-management behaviours on quality of life and fear of recurrence in head and neck cancer survivors: A population-based survey.

OBJECTIVES: Emerging cancer-survivorship research suggests that self-management can lead to improved outcomes. However, research examining the impact of self-management behaviours on quality of life (QoL) and fear of recurrence (FoR) in cancer survivors is lacking. This study investigated the relationship between self-management behaviours and QoL and FoR following treatment for head and neck cancer (HNC). METHODS: Postal surveys were sent to 734 eligible HNC survivors (ICD10 C01-C14; C32) in the Republic of Ireland who were 12- to 60-months post diagnosis. QoL and FoR were measured using the Functional Assessment of Cancer Therapy (FACT-G and Head and Neck Cancer Subscale) measure and Fear of Relapse/Recurrence Scale, respectively. Seven self-management behaviours were measured using the Health Education Impact Questionnaire. RESULTS: Three hundred and ninety-five HNC survivors completed surveys (50.3% response rate). After controlling for sociodemographic and clinical characteristics, self-management behaviours accounted for 20% to 39.4% of the variance in QoL and FoR. Higher scores on positive and active engagement in life, constructive attitudes and approaches, and skill and technique acquisition were significantly associated with higher global QoL and lower FoR, whilst higher scores on positive and active engagement in life and constructive attitudes and approaches only were significantly associated with higher HNC-specific QoL. Additionally, lower scores on self-monitoring and insight were significantly associated with higher HNC-specific and global QoL and lower FoR. CONCLUSIONS: The findings highlight the potential utility of self-management interventions promoting active problem solving, positive self-talk, and skill acquisition amongst cancer survivors. However, increased self-monitoring may relate to negative outcomes in HNC, a finding that warrants further investigation.

Integrating self-management into daily life following primary treatment: head and neck cancer survivors' perspectives.

BACKGROUND: Self-management may help cancer survivors to better deal with challenges to their physical, functional, social and psychological well-being presented by cancer and its treatment. Nonetheless, little is known about how people integrate cancer self-management practices into their daily lives. The aim of this study was to describe and characterise the processes through which head and neck cancer (HNC) survivors attempt to integrate self-management into their daily lives following primary treatment. METHODS: Using a purposeful critical case sampling method, 27 HNC survivors were identified through four designated cancer centres in Ireland and participated in face-to-face semi-structured interviews. Interviews were audio-recorded, transcribed and analysed using thematic analysis. RESULTS: Six themes describing HNC survivors' attempts to integrate self-management into their lives following treatment were identified: grappling with having to self-manage, trying out self-management strategies, becoming an expert self-manager, struggling to integrate self-management strategies into daily life, avoiding recommended self-management and interpreting self-management. CONCLUSIONS: This is the first study to describe HNC survivors' attempts to integrate self-management into their daily lives following primary treatment. The findings indicate that HNC survivors exhibit highly individualised approaches to self-management integration and abandon self-management strategies that fail to meet their own specific needs. IMPLICATIONS FOR CANCER SURVIVORS: Survivors may benefit from skills training and structured support to assist their transition between in-patient care and having to self-manage after primary treatment, and/or ongoing support to deal with persistent and recurring challenges such as eating difficulties and fear of recurrence.

The Impact of Supplementing PowerPoint with Detailed Notes and Explanatory Videos on Student Attendance and Performance in a Physiology Module in Medicine.

PowerPoint is widely used in higher education with reported advantages on student learning. The aim of this study was to examine the impact of detailed notes and videos as a supplement to PowerPoint slides on student attendance and performance. First-year medical students' opinion on whether the supplementary material assisted their learning of Physiology in addition to demographics was collected in a survey. Attendance was similar for participants who used notes and videos to those who did not, for male vs. female and for participants from biomedical vs. non-biomedical backgrounds. However, within the non-biomedical cohort, attendance of male respondents was significantly higher (95 ± 3 vs. 81 ± 6%, P < 0.05), although both groups used notes and videos. Similarly, attendance of female participants of biomedical background was higher (P < 0.05) than female participants of non-biomedical background (biomedical vs. non-biomedical: 94 ± 3 vs. 81 ± 6%) even though both cohorts used notes and videos. Providing notes and videos had no adverse impact on attendance (90 ± 2%, 8 lectures) and tended to enhance exam scores for low-performing students in the class when compared with those of previous years' cohorts (2018 vs. 2017 and 2016: 61 ± 5% vs. 55 ± 6% and 47 ± 8%, respectively). There was an increase in the immediate gain of knowledge following watching/listening to videos (after vs. before: 65 ± 3% vs. 48 ± 3%). The survey revealed a positive student perception of supplementary material mainly because they felt it reduced the time required to search for relevant information.

Barriers to active self-management following treatment for head and neck cancer: Survivors' perspectives.

OBJECTIVE: Active self-management practices may help head and neck cancer (HNC) survivors to deal with challenges to their physical, functional, social, and psychological well-being presented by HNC and its treatment. This study investigates the factors perceived by HNC survivors to act as barriers to their active self-management following primary treatment. METHODS: In this qualitative study, 27 HNC survivors identified through 4 designated cancer centres in Ireland participated in face-to-face semistructured interviews. Interviews were audio-recorded, transcribed, and analysed using thematic analysis. RESULTS: Four themes (and associated subthemes) describing barriers to survivors' active self-management were identified: emotional barriers (eg, fear of recurrence), symptom-related barriers (eg, loss of taste), structural barriers (eg, access to appropriate health services), and self-evaluative barriers (eg, interpersonal self-evaluative concerns). CONCLUSIONS: This is the first study to describe HNC survivors' views about barriers to their active self-management after treatment. The findings have important implications for self-management research and intervention development concerning HNC survivorship.

In a bad place: Carers of patients with head and neck cancer experiences of travelling for cancer treatment.

PURPOSE: To explore the effect that treatment-related commuting has on carers of patients with head and neck cancer. METHOD: Semi-structured interviews, thematically analysed, with 31 carers. RESULTS: Treatment-related commuting had a considerable impact on carers of patients with head and neck cancer, both in practical terms (economic costs, disruption) and also in psychological terms. Many carers of patients with head and neck cancer described becoming distressed by their commute. Some carers from large urban cities appeared to have hidden commuting burdens. Some carers respond to commuting stress by 'zoning out' or becoming 'like zombies'. CONCLUSIONS: Treatment-related travel for head and neck cancer can have significant practical and psychological impacts. Health professionals should be aware of the impacts that commuting can have on head and neck caregivers. Health services may be able to take practical steps, such as providing subsidized parking, to address head and neck carergivers' difficulties.

Worry in Head and Neck Cancer Caregivers: The Role of Survivor Factors, Care-Related Stressors, and Loneliness in Predicting Fear of Recurrence.

BACKGROUND: Fear of recurrence (FOR) is a primary concern for both cancer survivors and their caregivers, yet little is known about what care-related factors exacerbate this worry. OBJECTIVES: This study aimed to establish the role of care-related stressors-as distinct from survivor characteristics-in predicting FOR in head and neck cancer caregivers. METHODS: HNC survivor-caregiver dyads took part in a mailed survey. Survivors provided information on health and quality of life (using the Functional Assessment of Cancer Therapy Questionnaire). Caregivers provided sociodemographic information, impact of caring on their time and finances, as well as their level of social support (Oslo Support Scale), loneliness (3-point loneliness scale), and completed the Worry of Cancer Scale (to measure FOR). RESULTS: Data from 180 dyads were available for analysis. Multiple regression analysis was used to examine the role of caregiver stressors, social support, and loneliness while controlling for caregiver and survivor characteristics. The model explained 28% of the variance in Worry of Cancer scores (FOR). Caregivers who reported more loneliness, spent more time caring, and had greater financial stress from caring had higher scores on Worry of Cancer (FOR). Female caregivers, those caring for younger survivors, and those with survivors who had undergone less extensive forms of surgery also reported higher FOR. DISCUSSION: A combination of factors place caregivers at greater risk of cancer-related worry, paving the way for designing interventions aimed at reducing FOR in caregivers of patients with head and neck cancers.

Self-management strategies used by head and neck cancer survivors following completion of primary treatment: A directed content analysis.

OBJECTIVE: Head and neck cancer (HNC) survivors encounter unique challenges following treatment. This study aimed to identify self-management strategies that HNC survivors use to overcome these posttreatment challenges. METHODS: Twenty-seven individuals from 4 designated cancer centres in Ireland were interviewed about self-management strategies that helped them overcome challenges following HNC treatment. Interviews were audio-recorded, transcribed, and analysed using directed content analysis. RESULTS: Twenty self-management strategy types (encompassing 77 specific strategies) were identified. The most frequently used self-management strategy types were self-sustaining (used by 26 survivors), self-motivating (n = 25), and proactive problem solving (n = 25). The most frequently used specific strategies were adaptive approaches to ongoing physical consequences of HNC and its treatment (n = 24), customising dietary practices (n = 24), and maintaining a positive outlook (n = 22). CONCLUSIONS: The study identified strategies that helped HNC survivors to self-manage posttreatment challenges. This information could inform the design/development of self-management interventions tailored towards HNC survivors.

Making Implicit Assumptions Explicit in the Costing of Informal Care: The Case of Head and Neck Cancer in Ireland.

BACKGROUND: From a health service perspective, informal care is often viewed as a potentially cost-effective way of transferring costs out of the formal healthcare sector. However, informal care is not a free resource. OBJECTIVE: Our objective was to assess the impact of alternative valuation methods and key assumptions on the cost of informal care. METHODS: Informal carers who assisted in the care of a head and neck cancer survivor for at least 1 year were sent a postal questionnaire during January-June 2014 requesting information on time spent on caring tasks in the month prior to the survey. Time was costed using the opportunity cost approach (OCA; base-case) and the generalist (GRCA) and specialist (SRCA) replacement cost approaches. The impact on results of how household work and informal carers not in paid employment are treated were investigated. RESULTS: We estimated a cost of €20,613 annually in the base case (OCA - mean wage) for informal care. The GRCA and SRCA equivalent costs were 36% (€13,196) and 31% (€14,196) lower, respectively. In the extreme scenario of applying a 'zero' opportunity cost to carers not in paid employment, costs fell by 67% below the base case. CONCLUSION: While the choice of costing method is important for monetary valuation, the sociodemographic and economic characteristics of the underlying population can be equally so. This is especially important given the heterogeneous treatment of older carers, female carers and carers not in paid employment in the OCA. To limit this, we would suggest using the SRCA to value informal care across heterogeneous carer populations.

Associations between neighbourhood support and financial burden with unmet needs of head and neck cancer survivors.

PURPOSE: To assess the unmet needs of head and neck cancer survivors and investigate associated factors. In particular, to explore whether social support (family/friends and neighbours) and financial burden are associated with unmet needs of head and neck cancer (HNC) survivors. METHODS: This was a cross-sectional study of HNC survivors, with 583 respondents included in the analysis. Information was collected on unmet supportive care needs as measured by the Supportive Care Needs Survey (SCNS-SF34). Poisson regression with robust standard errors was used to examine factors associated with having one or more needs in each of the five domains (physical; psychological; sexuality; patient care and support; and health system and information). RESULTS: The mean age of respondents was 62.9years (standard deviation 11.3years) and one third of respondents were female. The top ten unmet needs was composed exclusively of items from the physical and psychological domains. Financial strain due to cancer and finding it difficult to obtain practical help from a neighbour were both associated with unmet needs in each of the five domains, in the adjusted analyses. CONCLUSION: Whilst in each domain, a minority of respondents have unmet needs, approximately half of respondents reported at least one unmet need, with the commonest unmet needs in the psychological domain. Providing services to people with these needs should be a priority for healthcare providers. We suggest that studies, which identify risk factors for unmet needs, could be used to develop screening tools or aid in the targeting of support.

Psychological variables associated with quality of life following primary treatment for head and neck cancer: a systematic review of the literature from 2004 to 2015.

OBJECTIVE: There has been a recent proliferation of research on quality of life (QoL) in head and neck cancer (HNC). The objective of this review was to systematically examine the evidence on psychological factors associated with QoL outcomes for HNC survivors in the post-treatment period published during 2004-2015. METHODS: Five databases were searched for studies investigating psychological factors associated with QoL in HNC survivors. Empirical studies published between January 2004 and June 2015 were included if they measured QoL as an outcome following treatment using a reliable and valid measure, examined its association with at least one psychological factor and included at least 50 HNC survivors. RESULTS: Twenty-four publications describing 19 studies (9 cross-sectional, 10 prospective) involving 2,263 HNC survivors were included. There was considerable heterogeneity in study design and diversity in measurement and analysis. Distress-related variables (depression, anxiety, distress) were most frequently investigated, and mostly reported negative associations with QoL outcomes. Associations were also observed between other psychological factors (e.g., coping, neuroticism and fear of recurrence) and QoL. CONCLUSIONS: Several psychological factors predict QoL among HNC survivors who have completed treatment. Routine screening and early interventions that target distress could improve HNC survivors' QoL following treatment. Longitudinal and population-based studies incorporating more systematic and standardised measurement approaches are needed to better understand relationships between psychological factors and QoL and to inform the development of intervention and supportive care strategies.Copyright © 2016 John Wiley & Sons, Ltd.

The unmet supportive care needs of long-term head and neck cancer caregivers in the extended survivorship period.

AIMS AND OBJECTIVES: To examine the unmet supportive care needs of long-term head and neck cancer caregivers, and the factors associated with those needs. BACKGROUND: Research on the unmet needs of head and neck cancer caregivers is lacking, particularly in the long-term survivorship period. DESIGN: Survey of 197 caregivers. METHODS: The study collected information on caregivers' demographic characteristics and their unmet supportive care needs (as measured by the Partners and Caregivers Supportive Care Needs Survey). An overall score of unmet need was generated, as were scores for four separate domains of unmet needs (emotional, health, information and work/social). RESULTS: Seventy six percentage of respondents were female, and 88% reported being married or living with a partner. Mean age was 57 years. Most caregivers had low levels of unmet needs. Managing fears about the cancer recurring was the most commonly reported individual need, described by slightly more than one in five respondents. The highest levels of need were located in the emotional and the health services domains. Loneliness and financial stress were consistently and significantly associated with high levels of unmet need in the multivariable analysis. CONCLUSIONS: Most head and neck cancer caregivers appear to have low levels of unmet need in the extended survivorship period. The greatest levels of unmet need that are experienced occur in relation to emotional and health service domains. Needs diminish over time. RELEVANCE TO CLINICAL PRACTICE: Health professionals should be aware that a minority of long-term head and neck caregivers continue to experience strong fears of cancer recurrence. To reduce unmet needs across multiple domains, health professionals should seek to reduce caregivers' feelings of loneliness, and to assist caregivers to reduce the financial burdens that they experience as a result of long-term caring.

Burden and happiness in head and neck cancer carers: the role of supportive care needs.

PURPOSE: Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC). METHODS: Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness RESULTS: One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (ß = .28, p = .04), while psychological needs (ß = -.38, p = .028), health care service needs (ß = -.30, p = .049), information needs (ß = .29, p = .028), carer comorbidity (ß = -.18, p = .030), and gender (ß = -.16, p = .045) were associated with happiness. CONCLUSIONS: Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.

Distress in long-term head and neck cancer carers: a qualitative study of carers' perspectives.

AIMS AND OBJECTIVES: To identify and describe the triggers of emotional distress among long-term caregivers (more than 1 year postdiagnosis) of people with head and neck cancer. BACKGROUND: Limited research has been conducted on the factors that cause head and neck cancer caregivers to become distressed. DESIGN: Qualitative cross-sectional. METHODS: In-depth semi-structured interviews. Interviews were conducted via telephone. The study setting was the Republic of Ireland. RESULTS: Interviews were conducted with 31 long-term caregivers (mean time since diagnosis 5·7 years, SD 2·9 years). Head and neck cancer caregivers experienced significant distress. Six key triggers of emotional distress were identified: understandings and fears of illness, lifestyle restrictions and competing demands, facial disfigurement, financial problems, comorbid health problems and witnessing suffering. Cutting across all of these individual causes of distress was a strong feeling of loss caused by head and neck cancer. CONCLUSIONS: Some head and neck cancer caregivers became considerably distressed by their caring role. Although distress appears to decline with time for many caregivers, some continue to be distressed for years following the patient's diagnosis. It would be useful for future research to explicitly investigate caregivers' experiences of loss. RELEVANCE TO CLINICAL PRACTICE: Health professionals may be able to reduce distress in this group if they can help caregivers to access resources that can be used to buffer financial problems. Health professionals may also be able to reduce distress if they can work with caregivers to help them to obtain something of personal value or significance from their experience of loss and suffering.