Managing work and cancer treatment: Experiences among survivors of hematological cancer

Thomson, Maria D.; Siminoff, Laura A.

doi:10.1002/cncr.31375

Cited by 6 publications

(5 citation statements)

References 29 publications

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“…18 As suggested by the transactional model of stress and coping, 19 families who have su cient resources to address the demands of caregiving have better caregiver outcomes compared to families with fewer resources. 20 Our ndings expand this by suggesting that primary caregiver needs, particularly those who are unsupported by other family and/or friends, require reassessment throughout the caregiving trajectory in order to remain responsive and protect the long term physical health of primary caregivers. As seen in this sample, primary caregivers may seem to be in good physical and mental health at the beginning of their caregiving journey but those with the least assistance from others may be at greater risk for detrimental health effects over the long term.…”

Section: Discussionsupporting

confidence: 58%

The presence of a secondary caregiver differentiates primary cancer caregiver well-being

Thomson

Wilson‐Genderson

Siminoff

2021

Support Care Cancer

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BackgroundInformal caregivers play a fundamental role in the care of hematological cancer patients, but less is known about how secondary caregivers are involved. We assessed the presence or absence of a secondary caregiver, the types of caregiving activities performed by primary and secondary caregivers and examined whether the presence of a secondary caregiver was associated with primary caregiver characteristics and wellbeing over time. MethodsA case series of hematological cancer patient-caregiver dyads (n = 171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Multi-level models were developed to examine the associations between presence of a secondary caregiver and the primary caregivers' wellbeing. ResultsMost (64.9%) primary caregivers reported having secondary caregivers. Multilevel models showed primary caregivers without help had higher baseline mental and physical health, but experienced deteriorating physical health overtime, compared to supported primary caregivers. Supported primary caregivers reported improvements in mental health over time that was associated with improvements in physical health. ConclusionsPrimary caregivers in good physical and mental health at the beginning of their caregiving journey but who have the least assistance from others may be at greatest risk for detrimental physical health effects long term. Attention to the arrangement of caregiving roles (i.e., who provides what care) overtime is needed to ensure that caregivers remain healthy and well supported.

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Section: Discussionsupporting

confidence: 58%

The presence of a secondary caregiver differentiates primary cancer caregiver well-being

Thomson

Wilson‐Genderson

Siminoff

2021

Support Care Cancer

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“…This highlights the salience of employment as a source of stress for caregivers. Patient decisions to continue to work throughout a cancer diagnosis and treatment, the ability and willingness to take time off, retire or quit are all personal decisions in uenced by the type of job held (fulltime, part time, hourly, salary), characteristics of the employer, and availability of bene ts such as paid time off and health insurance (11,20,21). Employment is tied to security and there may be worries about lost savings and future security of the family, especially if health insurance is tied to the cancer patient.…”

Section: Discussionmentioning

confidence: 99%

“…Financial burden (or toxicity) in the cancer survivorship literature is de ned as "the combined impact on a family of objective material burden and subjective nancial distress" (10). Factors contributing to nancial burden can be direct such as out-ofpocket costs associated with cancer treatment or indirect such as reduced or lost income, limited or lost access to bene ts and health insurance, or other changes to employment status (11,12). Families with lower income and unmarried caregivers report greater nancial strain (13).…”

Section: Introductionmentioning

confidence: 99%

Cancer patient and caregiver communication about economic concerns and the effect on patient and caregiver partners’ perceptions of family functioning

2023

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Purpose: Financial strain and stressful life events predict poor family communication. A cancer diagnosis can bring heightened emotional stress and nancial strain for most cancer patients and their families. We evaluated how level of comfort and willingness to discuss important but sensitive economic topics affected longitudinal assessments of family relationships, exploring both within-person and between partner effects over two years after a cancer diagnosis. Methods: A case series of hematological cancer patient-caregiver dyads (n=171) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 2 years. Multi-level models were developed to examine the associations between comfort discussing economic aspects of cancer care and family functioning.Results: Broadly, caregivers and patients who were comfortable discussing economic topics reported higher family cohesion and lower family con ict. Dyads' assessments of family functioning were in uenced both by their own and their partners level of communication comfort. Overtime caregiver but not patients perceived a signi cant decrease in family cohesion.Conclusions: Communicating about potentially delicate topics such as cancer care costs are associated with family functioning long term. Discussing employment in particular appears to be challenging for both members of the dyad.Implications for Cancer Survivors: In this sample, cancer patients did not perceive the decline in family cohesion that was reported by their family caregiver. This is an important nding for future work that aims to identify the timing and nature to best intervene with caregiver supports to mitigate caregiver burden that may negatively impact long term patient care and QOL.

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“…Interview data were coded using an iterative thematic approach 17–19 . A coding guide previously used in cancer caregiving studies with lung and lymphoma caregivers was adapted for use in the current study.…”

Section: Methodsmentioning

confidence: 99%

“…Interview data were coded using an iterative thematic approach. 17 , 18 , 19 A coding guide previously used in cancer caregiving studies with lung and lymphoma caregivers was adapted for use in the current study. Ten caregiver interviews were iteratively coded by the coding team (Co‐PI and master's level research assistants).…”

Section: Methodsmentioning

confidence: 99%

The many “costs” of transportation: Examining what cancer caregivers experience as transportation obstacles

Thomson

Houtven

et al. 2023

Cancer Medicine

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BackgroundTransportation has been identified as a specific source of burden for cancer caregivers. This study examined cancer caregivers' subjective experiences and objectives costs associated with transportation over a 6‐month period of providing end‐of‐life care to a family member or friend.MethodsThis was a multi‐site longitudinal, prospective cohort study that followed 223 caregiver–patient dyads. Data were collected using biweekly, semi‐structured interviews for up to 6 months and collection of all caregiving related receipts. Interviews were coded and analyzed using a comparative, iterative analysis and actual out of pockets costs were described using descriptive statistics.ResultsOver the 6‐month study period most caregivers (n = 143; 74%) discussed transportation at one or more timepoints. Average biweekly transportations costs to caregivers were $43.6. Caregivers described (n = 56; 39%) multiple direct and indirect costs of transportation, and 58% (n = 84) discussed the need for transportations services or assistance at the institutional level.ConclusionsCaregivers described the multifaceted costs of transportation they experienced which are in line with previous work. Alongside descriptions of direct costs, caregivers described key opportunity costs, such as personal and work time forgone to transporting patients. Caregivers also made suggestions for institutional and/or civic based solutions to facilitate reliable modes of transportation, rather than individual‐level intervention.

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Managing work and cancer treatment: Experiences among survivors of hematological cancer

Cited by 6 publications

References 29 publications

The presence of a secondary caregiver differentiates primary cancer caregiver well-being

The presence of a secondary caregiver differentiates primary cancer caregiver well-being

Cancer patient and caregiver communication about economic concerns and the effect on patient and caregiver partners’ perceptions of family functioning

The many “costs” of transportation: Examining what cancer caregivers experience as transportation obstacles

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