Unmet Support Research Articles

Paternal Perinatal Experiences during the COVID-19 Pandemic: A Framework Analysis of the Reddit Forum Predaddit.

During the COVID-19 pandemic, new parents were disproportionately affected by public health restrictions changing service accessibility and increasing stressors. However, minimal research has examined pandemic-related stressors and experiences of perinatal fathers in naturalistic anonymous settings. An important and novel way parents seek connection and information is through online forums, which increased during COVID-19. The current study qualitatively analyzed the experiences of perinatal fathers from September to December 2020 through the Framework Analytic Approach to identify unmet support needs during COVID-19 using the online forum predaddit on reddit. Five main themes in the thematic framework included forum use, COVID-19, psychosocial distress, family functioning, and child health and development, each with related subthemes. Findings highlight the utility of predaddit as a source of information for, and interactions of, fathers to inform mental health services. Overall, fathers used the forum to engage with other fathers during a time of social isolation and for support during the transition to parenthood. This manuscript highlights the unmet support needs of fathers during the perinatal period and the importance of including fathers in perinatal care, implementing routine perinatal mood screening for both parents, and developing programs to support fathers during this transition to promote family wellbeing.

“We Should All Be Welcome:” A Discourse Analysis of Religious Coping for Black Parents Raising Autistic Children

Disability for Black families raising autistic children is often inseparable from religious identity and experience. Black parents raising autistic children may rely on their religion to create meaning and seek guidance, but they may also experience unmet support needs from their religious congregations. In this study we analyzed group session transcripts and written responses using Foucauldian Critical Discourse Analysis to highlight the voices of seven Black parents raising autistic children in the context of a parent advocacy program. We aimed to understand the micro-, meso-, and macro-level processes that maintain stigma and barriers to communal coping. Implications for religious leaders and future research are noted.

Social support for patients with penile cancer: A mixed‐method study

AbstractThe research questions were as follows: How much social support do patients with penile cancer (PC) receive after surgical treatment for the condition; which factors are associated with the social support received; and how do patients with PC describe the social support they receive in terms of emotional support, affirmation and concrete aid? The purpose of this study is to describe the amount and type of social support (that is, emotional support, affirmation or concrete aid) received by patients with PC. In addition, it describes the associations between patients' background variables and their perceived social support. Men affected by PC experience a range of unmet support care needs, of which social support has not previously been thoroughly studied. Emotional support consists of caring for another person, respecting and creating a safe atmosphere for them and providing spiritual support. Affirmation is the reinforcement of knowledge and is especially evident in decision‐making processes through advising or counselling. Concrete aid means the provision of assistance in the form of an activity or service that causes the donor to use time or money for the benefit of another person. A partially mixed concurrent dominant status design was used and included semi‐structured interviews with, or letter responses from, 15 patients and a self‐reported social support score survey of 42 patients with PC. The data were analysed using descriptive statistics, a non‐parametric test and a deductive content analysis. Regarding the self‐reported social support score survey, 42 patients reported the social support as good (mean [SD]; range 4.34 [1.06]; 1–6). The most frequent form of social support was affirmation (mean [SD] 4.65 [1.07]), and the least frequent was emotional support (mean [SD] 4.14 [1.16]). Employment status and primary operation were significantly associated with the social support received. Qualitative data imply that family members are the most important emotional supporters. Emotional support from healthcare professionals was felt to be insufficient. Despite their affirmation, patients felt they received incomplete information about the disease. Patients received concrete aid from family members but felt there was a lack of professional help. Although patients deemed the overall social support received to be good, they received insufficient support from healthcare professionals (emotional support) and had unmet informational needs (affirmation) as well as uncertainties regarding income support (concrete aid). Our results can help nurses provide more holistic care to patients with PC. This information can be utilized in the development of nursing interventions for such patients and their family members. In the future, nurses' and other healthcare professionals' counselling skills should be taken into account in their training. They also need to be supported through consultation and referral resources when they reach the limits of their expertise.

Mediating role of self-efficacy between unmet needs and quality of life in palliative cancer caregivers.

Although unmet support needs are associated with health-related quality of life (HRQOL) in cancer caregivers, little is known about the mechanism underlying the relationship between two variables. The self-efficacy (SE) theory and literature suggest that caregiving SE is important in the perception of and reaction to caregiving demands, which in turn affects HRQOL. The aim of this study was to examine whether caregiving SE mediates the relationship between unmet support needs and HRQOL in family caregivers of palliative cancer patients. This secondary analysis used the data from 125 family caregivers of palliative cancer patients who were recruited from two public hospitals in Hong Kong. The caregivers completed a survey questionnaire that covered socio-demographic characteristics, unmet support needs, caregiving SE, and HRQOL. Parallel mediation analyses were conducted via SPSS PROCESS macro (Model 4) to test the hypothesized models. The direct effect of unmet support needs on mental HRQOL was significant (effect=-0.49, 95% CI=-0.06 to -0.92). For the indirect effect, only caregiving SE in the domain of 'care for the care recipient' mediated the relationship between unmet support needs and mental HRQOL (effect=-0.32, 95% CI=-0.08 to -0.59). The findings suggest that caregiving SE may function as a mechanism through which unmet support needs influence mental HRQOL in family caregivers of palliative cancer patients. Healthcare providers should consider developing supportive care interventions to improve caregivers' HRQOL by incorporating effective strategies to enhance SE and reduce unmet needs for this population.

Experiences of families of prolonged critical illness survivors that are discharged home: An integrative review of the literature

AbstractBackgroundWithin the context of the increasing prevalence of prolonged critical illness, a situation intensified by the COVID‐19 global pandemic, advancing understanding of the experiences of families of survivors that are discharged home is important in understanding the complexity of life for these people.AimsTo examine research related to the experiences of families of survivors of prolonged critical illness that are discharged home.Study designThis review was conducted using the Whittemore and Knafl framework for integrated literature reviews. A literature search was conducted using the electronic databases of Web of Science, CINHAL, Scopus, and PubMed for English language studies published between January 2002 and October 2021. Article titles and abstracts were screened in view of finding a selection of articles that focussed on the experiences of families of people who have survived a prolonged intensive care stay that are discharged home. Study quality was assessed using the CASP (Critical Appraisal Skills Programme) tool. Data analysis of nine peer‐reviewed articles was informed by the Braun and Clarke approach to thematic analysis. The PRISMA guidelines were used to report the review process.ResultsNine articles were included in the review. Three major themes were identified, namely, (i) the negative impact on family caregiver health and well‐being, (ii) caregiver burden, and (iii) unmet support needs.ConclusionsFamilies of prolonged critical illness survivors that are discharged home face complex challenges that make their experience difficult and demanding. Family support needs once patients are discharged home are largely unrecognized in this population.Relevance to clinical practiceThis review evidences the need to investigate further the experiences of families of survivors of prolonged critical illness. Further qualitative research has the potential to help inform service provision and support for these people.

Cognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease: an online cross-sectional survey

BackgroundInformal caregivers (i.e. family and friends) provide essential support to people with chronic kidney disease (CKD). Many informal caregivers experience mental health problems such as anxiety and depression due to the caregiving role, and commonly have unmet psychological support needs. One potential solution is cognitive behavioural therapy (CBT) self-help interventions that are less reliant on extensive involvement of healthcare professionals, which may increase access. Within the intervention development phase of the MRC framework, the study’s primary objective was to examine informal caregivers’ self-help intervention preferences (e.g. delivery format, content). Secondary objectives were to describe the informal caregiver’s situation (e.g. type of care activities) and mental health (symptoms of depression, anxiety, and stress).MethodsAn online cross-sectional survey conducted in the United Kingdom. Informal caregivers of adults living with CKD were recruited via social media, websites, newsletters, magazine articles, a podcast episode, and paid Facebook advertisements. The survey examined: informal caregiver characteristics; care recipient characteristics; self-help intervention preferences; and informal caregiver’s mental health using the DASS-21. Data were analysed using descriptive statistics.ResultsSixty-five informal caregivers participated. The majority (85%) were female, caring for a male (77%) spouse/partner (74%). Responses indicated 58% of informal caregivers were experiencing at least mild depression. In total, 48% indicated they were likely to use a CBT self-help intervention, preferring an intervention provided via internet (e.g. website) (64%), workbook (56%), or individually in-person (54%). Regarding content, interventions should cover a wide range of topics including living with CKD, support services, informal caregiver’s physical health, and diet. Overall, 48% reported a preference for a supported intervention, with support delivered in-person or via email by a trained professional at a community organisation.ConclusionsResults suggest CBT self-help interventions may be an acceptable way to provide psychological support to informal caregivers, however the study is limited by the small sample size. A wide range of intervention preferences were identified indicating a need to tailor intervention content and delivery to enhance acceptability and engagement. Results will inform development of a CBT self-help intervention for informal caregivers of people with CKD.

Self-management in adults after solid-organ transplantation: a scoping review protocol

IntroductionAfter solid-organ transplantation (SOTx), recipients must adhere to a lifelong medical regimen, change their lifestyle and cope with physiological and psychosocial challenges. This requires active participation in their care and...

Unmet Support Service Needs Among Rural Family Caregivers: A Population-Based U.S. Study a population-based U.S. study

Background: In rural communities around the world, individuals with serious health problems and their family caregivers often experience greater barriers to healthcare access. Identifying unmet support service needs of rural-dwelling caregivers can reveal intervention and policy targets. We examined unmet needs reported by rural caregivers in the U.S. Methods: We used data from the 2015-2018 U.S. Behavioral Risk Factor Surveillance System that included the optional caregiving module (32 U.S. states, D.C. and Puerto Rico). We identified rural caregivers using metropolitan statistical area (rural) and the item, "During the past 30 days, did you provide regular care or assistance to a friend or family member who has a health problem or disability?" Logistic regression models incorporating sampling weights provided adjusted odds ratios (adjusted ORs) of factors associated with having any unmet support service needs, and specific need types: classes about giving care, help with service access, support groups, individual counseling, respite. Factors included sociodemographic (gender, race/ethnicity, age, education, income, employment, marital status) and caregiving-related (intensity [±20 hours/week and ±2-year duration], caregiver-care recipient relationship, and main health problem) variables. Results: Of the 8,651 rural caregivers (representing 2.3 million) included, 16% endorsed unmet needs. Help accessing services was the most common need, followed by support groups and individual counseling. Factors associated with higher odds of any unmet need included Black vs. White race (adjusted OR: 1.74 [95%CI: 1.21-2.50]), college vs. high school graduate (adjusted OR: 1.85 [1.37-2.52]), and higher vs. lower intensity caregiving (adjusted OR: 2.18 [1.27-3.73]). Conclusions: Many U.S. rural caregivers report unmet support service needs. Future interventions to benefit rural caregivers should target individuals and communities with the highest unmet needs.

Support Needs and Coping Strategies in Non-Alcoholic Fatty Liver Disease (NAFLD): A Multidisciplinary Approach to Potential Unmet Challenges beyond Pharmacological Treatment

Non-alcoholic fatty liver disease (NAFLD) is the most frequently occurring chronic liver disease, affecting approximately 25–30% of the adult general population worldwide. NAFLD reflects excess hepatic accumulation of fat in the absence of increased alcohol intake, and, due to its close association with obesity, is frequently referred to as the ‘hepatic manifestation’ of metabolic syndrome. Indeed, a high percentage of individuals with NAFLD present with a combination of the cardio-metabolic comorbidities that are associated with the metabolic syndrome. In addition to its well-established link with the metabolic syndrome and increased risk for cardiovascular disease, NAFLD has also been associated with certain mental health issues (e.g., depression and stress). Although this link is now being increasingly recognized, there are still unmet needs regarding the holistic management of patients with NAFLD, which could further contribute to feelings of social isolation and loneliness. The latter conditions are also increasingly reported to pose a substantial risk to overall health and quality of life. To date, there is limited research that has explored these issues among patients with NAFLD, despite existing data which indicate that perceived loneliness and isolation may pose an additional health risk. Notably, many features associated with NAFLD have been related to these concepts, such as perceived stigma, fatigue, stress, and confusion regarding this diagnosis. As such, this review aimed to assess such potential problems faced by patients with NAFLD, and to explore the possibility of unmet support needs which could lead to perceived social isolation. Moreover, the importance of a compassionate approach towards such patients is discussed, together with potential coping strategies. Future research directions and the need for a multidisciplinary approach are also highlighted.

INFORMATION SEEKING IN OLDER ADULT RURAL CANCER SURVIVORS: UNMET NEEDS AND SEARCH EXPERIENCES

Abstract Cancer survivors over the age of sixty-five have specialized supportive care needs related to maintaining their health and quality of life after treatment. However, cancer survivors living in rural areas may experience barriers like limited digital infrastructure and/or low health literacy when attempting to access necessary informational resources. This project sought to identify older adult rural cancer survivors’ domains of unmet informational support and experiences searching for supportive informational resources. Data from a survey administered to cancer survivors (N=292 with complete age data) in rural areas of Western New York (RUCA codes 7-10) were analyzed using descriptive statistics. Variables of interest included Internet access, information-seeking activities, cancer-related topics of interest, and information search experiences. Fifty-four percent of participants in the sample self-identified as over the age of 65. Among older adult cancer survivors, 62% reported using the Internet. The following topics were identified as unmet cancer survivorship information needs: (1) decreasing the risk of cancer recurrence, (2) new symptoms that warrant contacting one’s doctor, and (3) medical advances in treatment. Most older adult respondents (70%) were confident in their ability to find needed health information but 40% were concerned about the quality of the information they found and 31% found their search experience frustrating. While rural cancer survivors have access to digital resources and report confidence in their ability to find survivorship information, our findings highlight the need for tailored information on cancer survivorship and interventions to support information appraisal and selecting high quality informational sources.

For autistic persons by autistic persons: Acceptability of a structured peer support service according to key stakeholders.

Social support is a protective factor in the mental health of autistic people. Furthermore, prejudice regarding autistic people is a constraint for the development of social support programmes by autistic peers. The objective of this study is to describe the anticipated acceptability of structured peer support programmes for and by autistic persons. Fifteen key stakeholders (six autistic adults, four caregiversand five service providers) participated in in-depth semistructured interviews. A qualitative thematic analysis of the content of the verbatim was carried out. We found that while a structured peer social support programme is acceptable to autistic people and caregivers, there was no consensus among service providers. The latter expressed doubts about the ability of autistic people to offer support. The framing of discussions between peers, the training of peer helpers, the support for autistic leadershipand an organization that considers the communicational and sensory characteristics of autistic persons, could influence adherence to such a programme. Moreover, a space without service providers is an important condition for the acceptability of a peer support programme. A structured peer support service for and by autistic persons could be an innovative way to answer the unmet support needs of autistic people. It seems essential to anticipate potential barriers and facilitators and to communicate among health professionals to promote this approach and reduce possible prejudice about the ability of autistic people to offer support to their peers. More studies are necessary. Fifteen key stakeholders who are involved in autistic people's trajectory of service and support participated in this research. We are a research team composed of healthcare professionals and researchers, in addition to one member of our team being an autistic advocate and a mental health peer-support mentor. Two members of our team are also parents of autistic children. The comprehensibility of the questions for the interview was consulted and discussed with one autistic advocate-collaborator.

Perceived Support Needs of School-Aged Young People on the Autism Spectrum and Their Caregivers.

With increasing demands for health, disability and education services, innovative approaches can help distribute limited resources according to need. Despite an increased focus on support needs within the clinical pathway and policy landscape, the body of research knowledge on this topic is at a relatively early stage. However, there appears to be a sense of unmet support needs and dissatisfaction with the provision of required support following an autism diagnosis amongst caregivers of young people on the spectrum. The primary aim of this study was to explore the perceived support needs of Australian school-aged young people on the spectrum and their caregiver(s). This was achieved using a phenomenographic Support Needs Interview conducted by occupational therapists during home-visits with caregivers of 68 young people on the spectrum (5-17 years). Qualitative data analysis resulted in two hierarchical outcome spaces, one each for young people and their caregivers, indicating interacting levels of support need areas that could be addressed through a combination of suggested supports. These support needs and suggested supports align with almost all chapters within the Body Functions, Activities and Participation and Environmental Factors domains of the International Classification of Functioning, Disability and Health. The overall goals of meeting these complex and interacting support needs were for the young people to optimize their functioning to reach their potential and for caregivers to ensure the sustainability of their caregiving capacity. A series of recommendations for support services, researchers and policy makers have been made to position support needs as central during the assessment, support and evaluation phases.

Experiences of Support Following Autism Diagnosis in Adulthood.

This study aimed to explore experiences of support after adulthood autism diagnosis. In this mixed-methods survey study of 137 adults, we found that most common formal supports received were counselling and mental health. Common unmet support needs were sensory sensitivities and accessing other services. Cost, lack of information, and fear of not being taken seriously were common barriers. Informal support was mainly helpful for self-understanding and emotions toward diagnosis. Qualitative findings included difficulties accessing formal support, need for practical quality-of-life supports and support from autistic peers and online communities. Based on these findings, future development of supportive interventions should address unmet needs, improve access, and explore the integration of autistic peer support and online support into formal services.

Informal care-givers' attitudes towards medical assistance in dying for persons with dementia

Abstract Medical assistance in dying (MAID) is legal in Canada but cannot be accessed through an advance request. Some data suggest that informal care-givers of persons with dementia support the legalisation of advance requests for MAID. Opponents argue that care-givers' support is due to society's failure to address their well-documented burden and unmet needs. To our knowledge, this assumption has never been tested. To fill this knowledge gap, we conducted a survey among 204 Canadian informal care-givers of persons with dementia to (a) elicit their attitudes towards allowing no longer competent adults to access MAID through an advance request, and (b) test the hypothesis that attitudes are in part driven by the level of burden experienced by care-givers and unmet needs for support. Attitudes were elicited with a clinical vignette involving a woman with Alzheimer's disease who requests MAID while still competent, or through an advance request for the time after she would lose decisional capacity. Informal care-givers' support for MAID ranged from 60 per cent in the scenario where the person is still competent and likely has several more years to live, to 87 per cent when she is depicted as no longer competent, in severe distress and close to death. Quality-of-life considerations and the value of self-determination were key arguments in support of legalising advance requests for MAID. Using multivariable logistic regression, we found no evidence that burden and unmet support needs influence attitudes towards advance requests for MAID, after controlling for other determinants. These findings contribute new insights into people's attitudes towards the sensitive issue of whether MAID should be extended to persons with dementia-induced decisional incapacity.

Support needs of people with younger onset Parkinson's disease: An interpretative phenomenological analysis

BackgroundPeople with younger onset Parkinson's disease reported trouble navigating the health system and managing their Parkinson's disease symptoms. This impacted their everyday responsibilities, such as maintaining employment, caring for children, or meeting financial commitments. AimTo understand the experiences of the unmet support needs of people diagnosed with younger onset Parkinson's disease and allow a deeper understanding of their lived experiences. MethodsData were collected by interviewing four participants about their perceptions of the current supports available. Interpretative phenomenological analysis was applied for in-depth exploration of the participant's experience, allowing the participant and the researcher to ‘make sense’ of their descriptions. The COREQ criteria for reporting of qualitative research were used to guide this study. FindingsFour clear overarching themes were identified: (i) ‘The pre-diagnosis of Parkinson's: denial’, (ii) ‘What is next?’, (iii) ‘Knowledge is power, mostly’, (iv) ‘Loss and acceptance of identity’. DiscussionThis study has highlighted the demoralisation people with younger onset Parkinson's disease experience when they are left in a state of not knowing what is next. People with younger onset Parkinson's disease experienced a range of changing emotions and described the emotional turmoil experienced when not supported. ConclusionThis research highlighted that a diagnosis of younger onset Parkinson's disease causes significant distress, particularly if trying to maintain employment or care for children. People with younger onset Parkinson's disease highlighted the need for psychosocial support to be instigated at the point of diagnosis.

Family Communication in Autism Spectrum Disorder: Applying the Family Caregiver Communication Typology to Parent Caregivers

ABSTRACT Parents of children with Autism Spectrum Disorder (ASD) experience greater stress and caregiver burden than parents of children with other disabilities. To cope with the stress of long-term caregiving, they rely on professionals for support and guidance. However, parents continue to report unmet communication and support needs. To inform tailored communication for parents of a child with ASD, this study used the existing Family Caregiver Communication Typology framework which identifies four caregiver communication types (manager, carrier, partner, and lone) and their unique communication and support needs. In-depth, structured interviews were conducted with parents (n = 22) and ASD professionals (n = 28) to explore communication characteristics of ASD parent caregivers. A thematic analysis revealed communication behaviors among four ASD parent caregiver types, further validating the typology. Future research is needed to develop targeted interventions for improving family-centered care based on ASD parent caregiver types.

2.69 Age Group–Specific Determinants of Mental Illness and Unmet Support Needs Among Canadians After the First COVID-19 Wave

Canadians endured unprecedented mental health (MH) and support access challenges at the onset of COVID-19. Identifying those remaining at risk for poor outcomes beyond the first wave is key to guiding systemic intervention efforts and policy. We hypothesized age to be a key factor influencing MH vulnerability profiles among Canadians.

Impact of breastfeeding positions on neck pain in postpartum mothers

Background: Breastfeeding mothers often encounters various complaints such as pain and discomfort. It was also seen that a mother has to attain feeding position for a long period of time. Thus, our aim was to find if there is any correlation between musculoskeletal neck pain and breastfeeding position in post-partum mothers.Methods: It was a cross sectional, observational study in which sampling was done by purposive method. 207 postpartum mothers fulfilling inclusion criteria were included and a self-made questionnaire and neck disability index (NDI) were used as outcome measure. Statistical analysis was done using statistical package for the social sciences (SPSS) version 24.Results: Almost all those mothers reported neck pain while breastfeeding in different positions especially in side-lying and cross-cradle in terms of NDI with median value of 11.1 and there were 65.7% mothers who had awareness about ideal breastfeeding position. The interpretation of neck pain showed changes with respect to different positions, when analyzed by Kruskal Wallis test.Conclusions: Though it showed statistical insignificance in correlation due to various reasons such as negligence, habitualisation, lack of awareness, unmet support from family.

Self-efficacy in managing post-treatment care among oral and oropharyngeal cancer survivors.

Physical and psychosocial effects of oral cancer result in long-term self-management needs. Little attention has been paid to survivors' self-efficacy in managing their care. Study goals were to characterise self-care self-efficacy and evaluate socio-demographics, disease, attitudinal factors and psychological correlates of self-efficacy and engagement in head and neck self-exams. Two hundred thirty-two oral cancer survivors completed measures of socio-demographics, self-care self-efficacy, head and neck self-exams and attitudinal and psychological measures. Descriptive statistics characterised self-efficacy. Hierarchical regressions evaluated predictors of self-efficacy. Survivors felt moderately confident in the ability to manage self-care (M = 4.04, SD = 0.75). Survivors with more comorbidities (β = -0.125), less preparedness (β=0.241), greater information (β = -0.191), greater support needs (β = -0.224) and higher depression (β = -0.291) reported significantly lower self-efficacy. Head and neck self-exam engagement (44% past month) was relatively low. Higher preparedness (OR = 2.075) and self-exam self-efficacy (OR = 2.606) were associated with more engagement in self-exams. Many survivors report low confidence in their ability to engage in important self-care practices. Addressing unmet information and support needs, reducing depressive symptoms and providing skill training and support may boost confidence in managing self-care and optimise regular self-exams.

Challenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms.

SummaryBackgroundThe importance of deriving benefit and meaning has been identified among cancer caregivers, but this has yet to be examined in the context of rare cancers. We sought to characterize unmet needs and experiences of caregivers of patients with Erdheim-Chester disease (ECD) and other histiocytic neoplasms (HN) and to identify factors associated with finding benefit and meaning-making in providing care for patients with rare cancers.MethodsCaregivers of patients with ECD and other HN completed quantitative surveys. Linear univariable regression modeling examined associations between unmet needs, social and family support, and intolerance of uncertainty with benefit finding and meaning-making. A subset participated in qualitative interviews assessing experiences of rare cancer caregiving that were analyzed with applied thematic analysis (NCT039900428).FindingsOf caregivers (N = 92, M = 54 years old, 68% female) of patients with ECD (75%) and other HN (25%), 78% reported moderately or severely unmet support needs, most frequently informational (58%) and psychological/emotional (66%) needs. Caregivers with unmet informational, psychological/emotional, and social support needs, difficulty tolerating uncertainty, a longer duration of the patient's illness, lower social support, more family conflict, and higher anxiety and depression symptoms demonstrated less benefit finding and meaning-making (ps <.05). Qualitative interviews (N = 19) underscored information and support needs and the capacity to derive meaning from caregiving.InterpretationRare cancer caregivers report numerous unmet information and support needs, needs that arise from disease rarity itself and which are associated with diminished capacity for deriving benefit and meaning from caregiving. Findings highlight targets for interventions to improve support for caregivers with HN and other rare cancers.FundingNIH P30 CA008748 (PI: Craig Thompson, MD), NIH T32 CA009461 (H.M.; PI: Jamie Ostroff, PhD), Frame Family Fund (E.L.D.), Applebaum Foundation (E.L.D.).