Participation and interest in support services among family caregivers of older adults with cancer

Dionne‐Odom, J. Nicholas; Applebaum, Allison J.; Ornstein, Katherine; Azuero, Andres; Warren, Paula; Taylor, Richard A.; Rocque, Gabrielle Betty; Kvale, Elizabeth; Demark‐Wahnefried, Wendy; Pisu, Maria; Partridge, Edward E.; Martin, Michelle Y.; Bakitas, Marie

doi:10.1002/pon.4603

Cited by 49 publications

(62 citation statements)

References 33 publications

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“…The importance of considering the needs of caregivers as well as patients is recognised for the provision of good care [ 28 , 29 ].The use of PROs for caregivers alongside those for patients might facilitate discussions about potential treatments and supportive interventions needed for both. There has been an increase in the development of services for caregivers, [ 30 , 31 ] now there is need for robust measures to quantify the effectiveness of any such intervention. The CRRS and its subscale scores may provide useful indications as to how different domains are impacted for different individuals, allowing for a more tailored approach to supportive interventions [ 32 ].…”

Section: Resultsmentioning

confidence: 99%

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

et al. 2019

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Purpose The caregiver roles and responsibilities scale (CRRS) was developed to facilitate formal assessment of broad life impacts for informal (i.e. unpaid) caregivers to people with cancer. Here we report the development and initial validation. Methods The CRRS was developed from the thematic analysis of two interview studies with cancer patients (stage III-IV breast, gynaecological, lung or melanoma) and caregivers. In the evaluation studies, participants completed the CRRS alongside the Caregiver Quality of Life—Cancer, the main criterion measure for concurrent validity, and the WHOQOL-BREF for additional convergent validity data. Questionnaires were completed at baseline, 7-days and 2-months. Demographic data and patient characteristics were collected at baseline. Results Two-hundred and forty-five caregivers to people with stage I-IV breast, colorectal, gynaecological, head and neck, lung or renal cancer or melanoma completed the CRRS at least once. The final 41 core items selected comprised five subscales: Support and Impact, Lifestyle, Emotional Health and Wellbeing, Self-care and Financial Wellbeing as well as three standalone items. Missing data rate was low (0.6%); there were no ceiling or floor effects for total scores. Cronbach’s alpha was 0.92 for the CRRS-41; 0.75–0.87 for the subscales. CRRS showed good test–retest reliability (ICC = 0.91), sensitivity to change and the predicted pattern of correlation with validation measures r = 0.75–0.89. The standalone 7-item jobs and careers subscale requires further validation. Conclusions Initial evaluation shows the CRRS has good validity and reliability and is a promising tool for the assessment of the effects of cancer and cancer treatment on the lives and wellbeing of informal caregivers. Electronic supplementary material The online version of this article (10.1007/s11136-019-02154-4) contains supplementary material, which is available to authorized users.

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Section: Resultsmentioning

confidence: 99%

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

et al. 2019

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“…In addition, they must cope with an uncertain future and the impending death of a family member Ewing, 2008, McDonald et al, 2018). Family caregivers often have unmet needs and report strong interest in receiving more support (Collins et al, 2017, Dionne-Odom et al, 2017, McIlfatrick et al, 2017. In clinical care, the use of a personcentered approach and a short and direct but still comprehensive tool can facilitate the work of assessing family caregiver needs and ensuring adequate support (Ewing et al, 2013a, Ewing et al, 2013b.…”

Section: Introductionmentioning

confidence: 99%

A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool

Alvariza

Holm

Benkel

et al. 2018

European Journal of Oncology Nursing

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“…Despite the recruitment of caregivers at the time of heightened stress before HCT, BMT‐CARE was feasible with high enrollment and retention rates. These findings are particularly relevant because of the challenges in recruiting caregivers for supportive care interventions, especially with the competing demands on caregivers' time . Importantly, approximately half of the BMT‐CARE intervention sessions took place over the telephone or via video conferencing, which allows for a more scalable and potentially disseminable intervention delivery model .…”

Section: Discussionmentioning

confidence: 99%

“…These findings are particularly relevant because of the challenges in recruiting caregivers for supportive care interventions, especially with the competing demands on caregivers' time. 5,13,[35][36][37] Importantly, approximately half of the BMT-CARE intervention sessions took place over the telephone or via video conferencing, which allows for a more scalable and potentially disseminable intervention delivery model. 38 We also included interventionists with diverse mental health training and backgrounds to enhance the scalability of BMT-CARE.…”

Section: Discussionmentioning

confidence: 99%

Multimodal psychosocial intervention for family caregivers of patients undergoing hematopoietic stem cell transplantation: A randomized clinical trial

El‐Jawahri

Jacobs

Nelson

et al. 2020

Cancer

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Background Caregivers of patients undergoing hematopoietic stem cell transplantation (HCT) experience an immense caregiving burden before, during, and after HCT. Methods We conducted an unblinded, randomized trial of a psychosocial intervention (BMT‐CARE) for caregivers of patients undergoing autologous and allogeneic HCT at Massachusetts General Hospital. Caregivers were randomly assigned to BMT‐CARE or usual care. BMT‐CARE was tailored to the HCT trajectory and integrated treatment‐related education and self‐care with cognitive‐behavioral skills to promote coping. Caregivers assigned to BMT‐CARE met with a trained interventionist (a psychologist or a social worker) in person, via telephone, or via videoconferencing for 6 sessions starting before HCT and continuing up to day +60 after HCT. The primary endpoint was feasibility, which was defined as at least 60% of eligible caregivers enrolling and completing 50% or more of the intervention sessions. We assesed caregiver quality of life (QOL; Caregiver Oncology Quality of Life Questionnaire), caregiving burden (Caregiver Reaction Assessment), psychological distress (Hospital Anxiety and Depression Scale), self‐efficacy (Cancer Self‐Efficacy Scale–Transplant), and coping (Measures of Current Status) at baseline and 30 and 60 days after HCT. We used mixed linear effect models to assess the effect of BMT‐CARE on outcomes longitudinally. Results We enrolled 72.5% of eligible caregivers (100 of 138), and 80% attended 50% or more of the intervention sessions. Caregivers randomized to BMT‐CARE reported improved QOL (B = 6.11; 95% CI, 3.50‐8.71; P < .001), reduced caregiving burden (B = –6.02; 95% CI, –8.49 to –3.55; P < .001), lower anxiety (B = –2.18; 95% CI, –3.07 to –1.28; P < .001) and depression symptoms (B = –1.23; 95% CI, –1.92 to –0.54; P < .001), and improved self‐efficacy (B = 7.22; 95% CI, 2.40‐12.03; P = .003) and coping skills (B = 4.83; 95% CI, 3.04‐6.94; P < .001) in comparison with the usual‐care group. Conclusions A brief multimodal psychosocial intervention tailored for caregivers of HCT recipients is feasible and may improve QOL, mood, coping, and self‐efficacy while reducing the caregiving burden during the acute HCT period.

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Participation and interest in support services among family caregivers of older adults with cancer

Cited by 49 publications

References 33 publications

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

Development and validation of the caregiver roles and responsibilities scale in cancer caregivers

A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool

Multimodal psychosocial intervention for family caregivers of patients undergoing hematopoietic stem cell transplantation: A randomized clinical trial

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