Position statement: Policies to support family caregivers

Pérez, Adriana; Rose, Karen; Caceres, Billy A.; Spurlock, Wanda; Bowers, Barbara J.; Lutz, Barbara; Arslanian‐Engoren, Cynthia; Reuter‐Rice, Karin; Bressler, Toby; Wicks, Mona; Taylor, Diana; Johnson-Mallard, Versie; Kostas-Polston, Elizabeth A.; Hagan, Teresa; Bertrand, D.; Reinhard, Susan C.

doi:10.1016/j.outlook.2018.04.009

Cited by 14 publications

(10 citation statements)

References 10 publications

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“…In addition, our system of survivorship care needs to address the needs of these caregivers from a population perspective (Perez et al, 2018). These caregivers had little education or guidance on how to manage these unique issues save a visit once a year if they were fortunate enough to be engaged in a program that understands the unique needs of the AYA and their caregivers (Schubart, Kinzie, & Farace, 2008).…”

Section: Discussionmentioning

confidence: 99%

Challenges to Family Management for Caregivers of Adolescent and Young Adult Survivors of Childhood Brain Tumors

SanGiacomo

Toth

Hobbie

et al. 2019

J Pediatr Oncol Nurs

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Due to the complexity of cancer late effects, the education required to provide anticipatory guidance and support to the caregivers of adolescent and young adult (AYA) survivors of childhood brain tumors can be difficult. Therefore, identifying challenges to family management (FM) could be helpful in anticipating complications with the integration of tumor and treatment late effects into family life. Building on previous research that described FM for children with chronic conditions, children who survived cancer, and the Family Management Styles Framework, the purpose of this study was to identify FM challenges for caregivers of AYA survivors of childhood brain tumors to guide clinical practice and research. Directed content analysis was used to identify FM challenges in data from semistructured interviews with 45 maternal caregivers for AYA survivors of childhood brain tumors living with them. Caregivers were largely White (89%) with an average age of 52 years, educated beyond the high school level (67%), and were partnered or married (53%). On average, caregivers had been caring for the AYA for 21 years since diagnosis, and 56% of their survivors had moderate functional restrictions. A primary and a secondary analyst were assigned to the data for each interview and completed a single summary matrix. A list of challenges was created by the research team based on Family Management Styles Framework, the literature, and clinical expertise. Seven core challenges to FM were identified: ensuring survivor well-being, supporting survivor independence, encouraging sibling well-being, planning family activities, sustaining parents as caregivers, attending to survivor late effects, and providing support and advocacy.

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Section: Discussionmentioning

confidence: 99%

Challenges to Family Management for Caregivers of Adolescent and Young Adult Survivors of Childhood Brain Tumors

SanGiacomo

Toth

Hobbie

et al. 2019

J Pediatr Oncol Nurs

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“…The 2014 Care and Children and Families Acts authorized general practitioners in the United Kingdom to identify and assess caregiver's needs (Peters, Rand, & Fitzpatrick, 2020;Tierney et al, 2020). The Recognize, Assist, Include, Support, and Engage (RAISE) Act directs the United States Secretary of the Department of Health and Human Services to develop a strategy for healthcare providers to recognise and support FCGs (Perez et al, 2018 Caregiving, 2015;Choula & Accius, 2019;Reinhard, Feinberg, Houser, Choula, & Evans, 2019). In Canada, the Canadian Association of Schools of Nursing (CASN) entry-to-practice competencies for gerontological nursing care include family, and specifically reference FCGs (Boscart, McCleary, Huson, Sheiban, & Harvey, 2017;CASN, 2017).…”

Section: Backg Rou N Dmentioning

confidence: 99%

Developing person‐centred care competencies for the healthcare workforce to support family caregivers: Caregiver centred care

Parmar

Anderson

Duggleby

et al. 2020

Health Soc Care Community

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Family caregivers (FCGs) are an integral part of the healthcare system. Currently, FCGs provide 70%-90% of the care required by community-dwelling children and adults living with complex chronic conditions and frailty. Despite FCG's contributions and the growing proportion of distressed caregivers, support for FCGs has not been a health system priority. Researchers have proposed training to enhance the competencies of health providers to work effectively with FCGs. In the absence of best practices for the competency indicators for caregiver-centred care, we have developed a competency framework for training the health workforce to support FCGs. The objectives in this paper are fourfold: (a) a brief review of stakeholder engagement that led to the development of the competencies the health workforce needs to support FCGs, (b) a description of the process used to name the competency domains, (c) a report on the Modified Delphi process (conducted 2019) used to validate the domain indicators, and (d) a description of the competency framework. We adopted a caregiver and a multilevel interdisciplinary stakeholder codesign approach throughout the competency development process. The competency domains include: (a) Recognising the Caregiver Role, (b) Communicating with FCGs, (c) Partnering with FCGs, (d) Fostering Resilience in FCGs, (e) Navigating Health and Social Systems and Accessing Resources, and, (f) Enhancing the Culture and Context of Healthcare. Our Caregiver-Centred Care Competencies for the health workforce are only a first step in supporting FCGs in their vital roles. There are few education and training resources to enable and empower health providers to support FCGs, there is an urgent need to develop training resources for the health workforce to recognise and support FCGs.

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“…End-of-life caregivers are primarily female (75.1%), and most are spouses 41.5% with an average age of more than 60 years; and many have their own age-related health problems (Applebaum & Breitbart, 2012). Most caregivers provide physical, emotional, and sometimes financial support (Perez et al, 2018). End-of-life caregivers also frequently assist with bereavement support for other family members, manage funeral arrangements, advocate for the decisions of their loved one, or make decisions when their family member cannot (National Hospice and Palliative Care Organization, 2013).…”

Section: Family Caregiversmentioning

confidence: 99%

Determining the Effect of Group Flower Arranging Sessions on Caregiver Self-Efficacy and Stress Levels in an In-Patient Hospice

Lavin

Bai

et al. 2020

Omega (Westport)

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This study was designed to promote enhanced self-efficacy and decreased stress levels for family caregivers at a hospice care hospital, thus increasing their quality of life. This is achieved through group flower arranging sessions. The objectives are to (a) enhance self-efficacy scores for family caregivers of Calvary patients, (b) decrease stress levels for family caregivers of Calvary patients, and (c) disseminate results to other hospices. The results show that the flower arranging sessions resulted in significantly increased self-efficacy and decreased stress and associated problems for the caregiver participants. Implications and suggestions for future research are discussed.

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Position statement: Policies to support family caregivers

Cited by 14 publications

References 10 publications

Challenges to Family Management for Caregivers of Adolescent and Young Adult Survivors of Childhood Brain Tumors

Challenges to Family Management for Caregivers of Adolescent and Young Adult Survivors of Childhood Brain Tumors

Developing person‐centred care competencies for the healthcare workforce to support family caregivers: Caregiver centred care

Determining the Effect of Group Flower Arranging Sessions on Caregiver Self-Efficacy and Stress Levels in an In-Patient Hospice

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