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"Creating a family after battling cancer is exhausting and maddening": Exploring real-world experiences of young adult cancer survivors seeking financial assistance for family building after treatment.

ABSTRACT: OBJECTIVE:Young adult (YA) cancer survivors who received gonadotoxic therapy are at risk for impaired fertility and/or childbearing difficulties. This study explored the experiences and financial concerns of survivors pursuing family building through assisted reproductive technology (ART) and adoption. METHODS:Retrospective study of data collected from grant applications for financial assistance with family building. Grounded theory methodology using an inductive data-driven approach guided qualitative data analysis. RESULTS:Participants (N = 46) averaged 32 years old (SD = 3.4) were primarily female (81%) and married/partnered (83%). Four main themes were identified representing the (1) emotional experiences and (2) financial barriers to family building after cancer, (3) perceived impact on partners, and (4) disrupted life trajectory. Negative emotions were pervasive but were balanced with hope and optimism that parenthood would be achieved. Still, the combination of high ART/adoption costs, the financial impact of cancer, and limited sources for support caused extreme financial stress. Further, in the face of these high costs, many survivors reported worry and guilt about burdening partners, particularly as couples failed to meet personal and societal expectations for parenthood timelines. CONCLUSION:After cancer, YAs face numerous psychosocial and financial difficulties in their pursuits of family building when ART/adoption is needed to achieve parenthood. Survivors interested in future children may benefit from follow-up fertility counseling post-treatment including discussion of ART options, surrogacy, and adoption, as appropriate, and potential barriers. Planning for the financial cost and burden in particular may help to avoid or mitigate financial stress later on.

SUBMITTER: Benedict C

PROVIDER: S-EPMC6860028 | biostudies-literature | 2018 Dec

REPOSITORIES: biostudies-literature

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"Creating a family after battling cancer is exhausting and maddening": Exploring real-world experiences of young adult cancer survivors seeking financial assistance for family building after treatment.

Benedict Catherine C McLeggon Jody-Ann JA Thom Bridgette B Kelvin Joanne F JF Landwehr Michelle M Watson Samantha S Ford Jennifer S JS

Psycho-oncology 20181019 12

<h4>Objective</h4>Young adult (YA) cancer survivors who received gonadotoxic therapy are at risk for impaired fertility and/or childbearing difficulties. This study explored the experiences and financial concerns of survivors pursuing family building through assisted reproductive technology (ART) and adoption.<h4>Methods</h4>Retrospective study of data collected from grant applications for financial assistance with family building. Grounded theory methodology using an inductive data-driven appro ...[more]

PMID: 30238545

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Project description:BackgroundIn the United States, more than half of cervical cancers occur in women who are inadequately screened. Interventions to improve access to cervical cancer preventive care is critical to reduce health inequities.ObjectiveThis study aimed to evaluate the need for cervical cancer screening among women seeking assistance with basic needs and to assess best approaches to facilitate Papanicolaou test referral.Study designThis study is a secondary analysis of a randomized controlled trial of low-income female callers to 2-1-1 Missouri, a helpline for local health and social services. The need for cervical cancer screening was assessed. Callers were randomized to 1 of 3 arms, each providing a Papanicolaou test referral: verbal referral only, verbal referral and tailored print reminder, or verbal referral and navigator. The primary outcome was contacting a Papanicolaou test referral 1 month following intervention. Student t tests or Mann-Whitney U tests were used to analyze significant differences in continuous variables, whereas Fisher exact or χ2 tests were used for categorical variables. We stratified by number of unmet basic needs (0-1 vs ≥2) and compared success of contacting a Papanicolaou test referral among study groups (verbal referral vs tailored reminder vs navigator) using the Fisher exact test and χ2 test, respectively. Multivariate logistic regression was used to assess risk factors for nonadherence for Papanicolaou test at baseline and at 1 month follow-up, adjusting for race and ethnicity, age, insurance status, self-rated health, smoking, and study group.ResultsAmong 932 female callers, 250 (26.8%) needed cervical cancer screening. The frequency of unmet basic needs was high, the most common being lack of money for unexpected expenses (91.2%) and necessities, such as food, shelter, and clothing (73.2%). Among those needing a Papanicolaou test, 211 women received screening referrals. Women in the navigator group (21 of 71, 29.6%) reported higher rates of contacting a Papanicolaou test referral than those exposed to verbal referral only (11/73, 15.1%) or verbal referral and tailored print reminder (9/67, 13.4%) (P=.03). Among 176 women with ≥2 unmet needs who received a Papanicolaou test referral, the provision of a navigator remained associated with contacting the referral (navigator [33.9%] vs verbal referral [17.2%] vs tailored reminder [10.2%]; P=.005). Assignment to the navigator group (adjusted odds ratio, 3.4; 95% confidence interval, 1.4-8.5) and nonwhite race (adjusted odds ratio, 2.0; 95% confidence interval, 1.5-2.8) were independent predictors of contacting a Papanicolaou test referral.ConclusionLow-income women seeking assistance with basic needs often lack cervical cancer screening. Health navigators triple the likelihood that women will make contact with Papanicolaou test services, but most 2-1-1 callers still fail to schedule Papanicolaou testing despite assistance from navigators. Interventions beyond health navigators are needed to reduce cervical cancer disparities.

Project description:In recent years, increased attention has been paid to the benefit finding of family caregivers due to the important role they play. Although some instruments measure benefit finding of caregivers, they do not comprehensively address it in terms specific to the family caregivers of stroke survivors, who require long-term, consistent care. This study is the first effort to develop a comprehensive Caregiver Benefit Finding Scale for the family caregivers of stroke survivors in a Chinese cultural setting. First, 50 items were extracted from a systematic literature review, and a semi-structured interview was conducted with 20 stroke family caregivers to develop the preliminary version of the scale (Version 1). Second, Delphi procedures with 20 experts were used to revise the first version and create Version 2 (37 items). Another six experts were recruited for content validation. Item content validity index (I-CVI) values ranged from 0.83 to 1.00, and the value of the scale CVI was 0.97. Third, 309 family caregivers completed the Version 2 questionnaire and the Chinese version of the Positive Aspects of Caregiving. Two weeks later, 35 family caregivers once again completed the questionnaires. An exploratory factor analysis produced four components (personal growth, health promotion, family growth, and self-sublimation) and 26 items for Version 3 (the cumulative proportion variance was 74.14%). Subsequently, 311 family caregivers completed Version 3. A confirmatory factor analysis confirmed the structure. The goodness of fit index (GFI) = 0.921, adjusted GFI = 0.901, normal fit index = 0.951, incremental fit index = 0.990, comparative FI = 0.990, and the root mean square error of approximation = 0.02 were within the acceptable range. Criterion-related validity was equal to 0.803. The model-based internal consistency index was 0.845 and the values of the Cronbach'α coefficient of the four dimensions were 0.885-0.953. The split-half reliability was 0.92, and the test-retest reliability was 0.994. These findings provide preliminary evidence of the validity and reliability of the Caregiver Benefit Finding Scale. The scale can help researchers and clinicians to achieve a more comprehensive understanding of stroke family caregivers' positive experience. This understanding is necessary for future efforts to address issues in benefit finding by targeting the underlying mechanism and intervention.

Dataset Information

"Creating a family after battling cancer is exhausting and maddening": Exploring real-world experiences of young adult cancer survivors seeking financial assistance for family building after treatment.

Publications

"Creating a family after battling cancer is exhausting and maddening": Exploring real-world experiences of young adult cancer survivors seeking financial assistance for family building after treatment.

Similar Datasets

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