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Article ; Online: A Community Survey of Referral Sources to Identify Primary Care and Gender-Affirming Care Providers

Anja Jokela, MD / Maija Reblin, PhD

AJPM Focus, Vol 3, Iss 2, Pp 100170- (2024)

2024

Abstract: Introduction: Barriers exist in access to primary care as well as specialty healthcare such as gender-affirming care. Understanding the referral sources used to identify new providers for these types of care can help healthcare systems facilitate access. ...

Abstract	Introduction: Barriers exist in access to primary care as well as specialty healthcare such as gender-affirming care. Understanding the referral sources used to identify new providers for these types of care can help healthcare systems facilitate access. Methods: Using data from a community-based survey, demographics and information relevant to finding new healthcare providers were assessed. Results: Data from 165 participants suggest that seeking a new primary care provider was perceived as challenging. The most common referral sources for primary care providers were family/friends, a doctor, or a medical center website. The most common referral sources for gender–affirming care providers were a doctor, family/friends, or social media. There were significant differences in the types of referral sources most likely to be utilized for primary versus gender-affirming care. Conclusions: Personal connections, including trusted doctors, can be important sources of provider referrals. Additional resources may be needed to facilitate their ability to make quality connections. Community resources and social media can be important sources when existing social networks may not have knowledge about the needs of particular communities, especially those who may be at risk of discrimination. More inclusive and secure referral sources may be needed to ensure gender-affirming care referrals are made.
Keywords	Primary care ; sexual and gender minorities ; healthcare provider ; information-seeking behavior ; access to healthcare ; health services for transgender persons ; Public aspects of medicine ; RA1-1270
Subject code	360
Language	English
Publishing date	2024-04-01T00:00:00Z
Publisher	Elsevier
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Hospice Caregivers’ Perception of Family and Non-Family Social Support and Stress over Time

Maija Reblin / Djin L. Tay / Eli Iacob / Kristin G. Cloyes / Megan C. Thomas Hebdon / Lee Ellington

International Journal of Environmental Research and Public Health, Vol 20, Iss 5009, p

Associations with Reports of General Support

2023 Volume 5009

Abstract: Social support has been identified as a key factor to protect wellbeing for home hospice cancer caregivers. However, few studies have assessed social support over time in this context, and measures of support are often limited to general assessments of ... ...

Abstract	Social support has been identified as a key factor to protect wellbeing for home hospice cancer caregivers. However, few studies have assessed social support over time in this context, and measures of support are often limited to general assessments of perceived support. Our goal was to (1) describe change in cancer home hospice caregivers’ social support over time during care and into bereavement and (2) explore the impact of perceived stress and support from family and non-family members on caregivers’ perceived general social support. We conducted a secondary analysis of longitudinal prospective questionnaire data. Forty caregivers completed measures of general perceived support, family and non-family support and stress during hospice enrollment and 2 and 6 months post the patient’s death. Linear mixed models were used to determine change in support over time and the contribution of specific support/stress ratings to general support assessments. Caregivers overall had moderate and stable levels of social support over time, though there was significant variation between and within individuals. Family and non-family support and stress from family predicted general perceptions of social support, while no effects were found for non-family stress. This work suggests a need for more specific measures of support and stress, and the need for research to focus on improving baseline levels of caregiver perceived support.
Keywords	caregiver ; social support ; home hospice ; oncology ; longitudinal ; interpersonal relationship ; Medicine ; R
Subject code	300
Language	English
Publishing date	2023-03-01T00:00:00Z
Publisher	MDPI AG
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Feasibility, acceptability, and outcomes of a pilot intervention facilitating communication about family building between patients with inherited cancer risk and their partners

Marleah Dean / Jonathan T. Baker / Maija Reblin / Elizabeth A. Hintz / Susan T. Vadaparampil / Carolyn Haskins / Gwendolyn P. Quinn

PEC Innovation, Vol 1, Iss , Pp 100055- (2022)

2022

Abstract: Objective: This study reports the feasibility, acceptability, and outcomes of a longitudinal, communication pilot intervention for patients with inherited cancer risk and their partners. Methods: Couples were recruited through social media and snowball ... ...

Abstract	Objective: This study reports the feasibility, acceptability, and outcomes of a longitudinal, communication pilot intervention for patients with inherited cancer risk and their partners. Methods: Couples were recruited through social media and snowball sampling. At Time 1 and 2, 15 couples completed a structured discussion task about family building concerns and decisions, followed by an online post-discussion questionnaire and dyadic interview to provide feedback about the experience. Interview data were analyzed to assess outcomes using applied thematic analysis. Results: Participants reported the intervention created an opportunity for honest disclosure of family building goals and concerns. Participants also stated the structured nature of the discussion task was useful and did not cause additional stress. The intervention ultimately aided at-risk patients and their partners to realize their concordant concerns, discover/confront discordant concerns, and mutually agree upon next steps. Conclusions: This pilot intervention is feasible and acceptable. Furthermore, it offers a framework to facilitate effective communication about family building between patients with inherited cancer risk and their partners. Innovation: This intervention is the first conversational tool designed for at-risk patients and their partners.
Keywords	Inherited cancer risk ; Family building ; Couples ; Discussion task ; Interpersonal communication ; Pilot intervention ; Public aspects of medicine ; RA1-1270
Subject code	300
Language	English
Publishing date	2022-12-01T00:00:00Z
Publisher	Elsevier
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Cancer caregivers at the end-of-life

Sara G. Bybee / Megan C. Thomas Hebdon / Kristin G. Cloyes / Shirin O. Hiatt / Eli Iacob / Maija Reblin / Margaret F. Clayton / Lee Ellington

PEC Innovation, Vol 3, Iss , Pp 100193- (2023)

How much me vs. how much we?

2023

Abstract: Objective: This study explored cancer caregivers' individual and communal coping through their use of personal and communal pronouns during naturally occurring conversations. Methods: Nurse-home hospice visits involving cancer patients and their partner ... ...

Abstract	Objective: This study explored cancer caregivers' individual and communal coping through their use of personal and communal pronouns during naturally occurring conversations. Methods: Nurse-home hospice visits involving cancer patients and their partner caregivers were audio recorded and then transcribed. Pronoun use was analyzed using Linguistic Inquiry Word Count (LIWC) software and descriptive statistics compared patient and partner caregivers' pronoun use. Personal and communal pronoun use was examined within six identified topics of caregiver speech: patient medical care, daily life, emotion, criticism/disagreement, relationships with family/friends, and asserting needs. Results: Dyads (N = 76) had an average of 35.8 years in their relationship. Caregivers used proportionately more first-person singular (I-talk) than first-person plural (we-talk). However, they used significantly less I-talk than patients and less I-talk than LIWC measures in naturally occurring speech. Caregivers were most likely to discuss patient medical care (41.9%) and least likely to discuss their own needs (3.8%). Conclusion: Partner caregivers may find it easier to express emotions related to communal stressors, rather than their individual ability to cope with end-of-life caregiving. Innovation: Examining personal and communal pronoun use by partner caregivers during nurse-home hospice visits may provide a more objective measure of caregiver coping than standard self-report measures.
Keywords	cancer ; Caregiving ; Communication ; Communal coping ; Personal agency ; Pronoun use ; Public aspects of medicine ; RA1-1270
Subject code	150
Language	English
Publishing date	2023-12-01T00:00:00Z
Publisher	Elsevier
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Knowledge of and beliefs about palliative care in a nationally-representative U.S. sample.

Jennifer M Taber / Erin M Ellis / Maija Reblin / Lee Ellington / Rebecca A Ferrer

PLoS ONE, Vol 14, Iss 8, p e

2019 Volume 0219074

Abstract: Palliative care aims to improve quality of life for people with serious illness and their families. One potential barrier to palliative care uptake is inaccurate knowledge and/or negative beliefs among the general population, which may inhibit early ... ...

Abstract	Palliative care aims to improve quality of life for people with serious illness and their families. One potential barrier to palliative care uptake is inaccurate knowledge and/or negative beliefs among the general population, which may inhibit early interest in, communication about, and integration of palliative care following subsequent illness diagnosis. We explored knowledge and beliefs about palliative care among the general public using nationally-representative data collected in 2018 as part of the cross-sectional Health Information National Trends Survey. Only individuals who had heard of palliative care (n = 1,162, Mage = 51.8, 64% female) were queried on knowledge and beliefs. We examined whether self-assessed level of awareness of palliative care (i.e., knowing a little vs. enough to explain it) was associated with the relative likelihood of having accurate/positive beliefs, inaccurate/negative beliefs, or responding "don't know" to questions about palliative care. Respondents who indicated knowing a lot about palliative care had more accurate versus inaccurate knowledge than those who knew a little on only two of six items and more positive attitudes on only one of three items. In particular, respondents with greater awareness were equally likely to report that palliative care is the same as hospice and requires stopping other treatments, and equally likely to believe that palliative care means giving up and to associate palliative care with death. Those with higher awareness were less likely than those with lower awareness to respond "don't know," but greater awareness was not necessarily associated with having accurate or positive beliefs about palliative care as opposed to inaccurate or negative beliefs. Thus, even members of the general public who perceived themselves to know a lot about palliative care were often no less likely to report inaccurate knowledge or negative beliefs (versus accurate and positive, respectively). Findings suggest a need to improve awareness and attitudes about palliative care.
Keywords	Medicine ; R ; Science ; Q
Subject code	360
Language	English
Publishing date	2019-01-01T00:00:00Z
Publisher	Public Library of Science (PLoS)
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Intimate Relationships and Stroke

Alexandra L. Terrill / Maija Reblin / Justin J. MacKenzie / Brian R. W. Baucom / Jackie Einerson / Beth Cardell / Lorie G. Richards / Jennifer J. Majersik

International Journal of Environmental Research and Public Health, Vol 19, Iss 1804, p

Piloting a Dyadic Intervention to Improve Depression

2022 Volume 1804

Abstract: Stroke affects not only the survivor but also their romantic partner. Post-stroke depression is common in both partners and can have significant negative consequences, yet few effective interventions are available. The purpose of this study was to pilot ... ...

Abstract	Stroke affects not only the survivor but also their romantic partner. Post-stroke depression is common in both partners and can have significant negative consequences, yet few effective interventions are available. The purpose of this study was to pilot test a novel 8-week remotely administered dyadic intervention (ReStoreD) designed to help couples better cope with stroke-related changes and reduce depressive symptoms. Thirty-four cohabitating survivor–partner dyads at least 3 months post-stroke and reporting some changes in mood were enrolled. Depressive symptoms were assessed pre- and post-intervention and at 3-month follow-up. Repeated measures analysis of variance was used to assess the effects of ReStoreD over time on depressive symptoms in stroke survivors and their partners. Twenty-six dyads completed the study. Although statistical significance was not reached, there was a large effect size for improvements in depressive symptoms for stroke survivors. There was no significant improvement for partners, and the effect size was minimal. Those with more significant depressive symptoms at baseline were more likely to benefit from the intervention. This pilot study established proof-of-concept by demonstrating that depressive symptoms can be lessened in stroke survivors and partners with more severe depressive symptoms. Future research will establish the efficacy of the intervention in a fully powered study.
Keywords	stroke ; post-stroke depression ; depression ; caregiver ; dyadic intervention ; positive psychology ; Medicine ; R
Subject code	150
Language	English
Publishing date	2022-02-01T00:00:00Z
Publisher	MDPI AG
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: A mindfulness-based stress management program for caregivers of allogeneic hematopoietic stem cell transplant (HCT) patients

Min-Jeong Yang / Valerie V Yepez / Karen O Brandon / Maija Reblin / Joseph Pidala / Heather S L Jim / Jerrold S Meyer / L Robert Gore / Nandita Khera / Penny Lau / Rachel M Sauls / Sarah R Jones / Christine Vinci

PLoS ONE, Vol 17, Iss 4, p e

Protocol for a randomized controlled trial.

2022 Volume 0266316

Abstract: Objectives Caregivers of allogeneic hematopoietic stem cell transplant (HCT) cancer patients experience high caregiver burden and carry a significant amount of responsibility. Mindfulness has the potential to lessen caregiver burden by aiding in stress ... ...

Abstract	Objectives Caregivers of allogeneic hematopoietic stem cell transplant (HCT) cancer patients experience high caregiver burden and carry a significant amount of responsibility. Mindfulness has the potential to lessen caregiver burden by aiding in stress management. To date, no studies have examined the efficacy of mindfulness in reducing caregiver burden in this population. Based on our pilot study demonstrating initial feasibility and acceptability of FOCUS (Focusing On mindfulness for Caregivers Under Stress), this 3-arm randomized controlled trial aims to examine the efficacy of a 6-week mindfulness-based stress management program for allogeneic HCT caregivers. Hypotheses include that the FOCUS condition will have lower post-treatment caregiver burden and that patients of these caregivers will have better patient health outcomes compared to other treatment conditions. Method Eligible caregivers will be randomly assigned to one of three treatment conditions: FOCUS, Healthy Living (HL; active control), and Enhanced Care (EC; usual care). Caregivers in FOCUS and HL will participate in 6-week weekly individual treatment sessions and will be sent brief daily momentary interventions/messages. Caregivers in all conditions will complete daily diaries over the course of treatment. Patients of enrolled caregivers will be enrolled for assessments only. Participants will complete assessments at baseline, end of treatment, 2- and 6-months post-treatment. Biomarker data will be collected via hair cortisol concentrations from caregivers at baseline and 6 months post-treatment. Results Recruitment is ongoing. Conclusions The data collected from this study will provide evidence on the efficacy of mindfulness in alleviating HCT caregiver stress and impacting patient health outcomes. Trial registration The current study is registered in clinicaltrials.gov (NCT05078229); see https://clinicaltrials.gov/ct2/show/NCT05078229?term=christine+vinci&draw=2&rank=1.
Keywords	Medicine ; R ; Science ; Q
Subject code	150
Language	English
Publishing date	2022-01-01T00:00:00Z
Publisher	Public Library of Science (PLoS)
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: A randomized wait-list controlled trial of a social support intervention for caregivers of patients with primary malignant brain tumor

Maija Reblin / Dana Ketcher / Rachael McCormick / Veronica Barrios-Monroy / Steven K. Sutton / Bradley Zebrack / Kristen J. Wells / Solmaz Sahebjam / Peter Forsyth / Margaret M. Byrne

BMC Health Services Research, Vol 21, Iss 1, Pp 1-

2021 Volume 8

Abstract: Abstract Background Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain tumors based on the rapid progression ... ...

Abstract	Abstract Background Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain tumors based on the rapid progression of disease, including physical and cognitive debilitation. Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life. However, barriers to obtaining needed social support exist for caregivers. To address this need, our team developed and is assessing a multi-component caregiver support intervention that uses a blend of technology and personal contact to improve caregiver social support. Methods We are currently conducting a prospective, longitudinal 2-group randomized controlled trial which compares caregivers who receive the intervention to a wait-list control group. Only caregivers directly receive the intervention, but the patient-caregiver dyads are enrolled so we can assess outcomes in both. The 8-week intervention consists of two components: (1) The electronic Social Network Assessment Program, a web-based tool to visualize existing social support resources and provide a tailored list of additional resources; and (2) Caregiver Navigation, including weekly phone sessions with a Caregiver Navigator to address caregiver social support needs. Outcomes are assessed by questionnaires completed by the caregiver (baseline, 4-week, 8-week) and the cancer patient (baseline, and 8-week). At 8 weeks, caregivers in the wait-list condition may opt into the intervention. Our primary outcome is caregiver well-being; we also explore patient well-being and caregiver and patient health care utilization. Discussion This protocol describes a study testing a novel social support intervention that pairs a web-based social network visualization tool and resource list (eSNAP) with personalized caregiver navigation. This intervention is responsive to a family-centered ...
Keywords	Caregiver ; Oncology ; Social support ; Psychosocial intervention ; Clinical navigation ; mHealth ; Public aspects of medicine ; RA1-1270
Subject code	300
Language	English
Publishing date	2021-04-01T00:00:00Z
Publisher	BMC
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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