How Does Caregiver Well-Being Relate to Perceived Quality of Care in Patients With Cancer? Exploring Associations and Pathways

Litzelman, Kristin; Kent, Erin E.; Mollica, Michelle; Rowland, Julia H.

doi:10.1200/jco.2016.67.3434

Cited by 119 publications

(126 citation statements)

References 35 publications

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“…Some possible reasons include early initiation of palliative care, documented advance care plans, 'not for resuscitation orders', and fewer admissions to ICU [32,47]. These findings suggest it is imperative that other disease processes ensure palliative and end-of-life care planning are included in clinical management guidelines.…”

Section: Advance Care Planningmentioning

confidence: 93%

“…Our research suggests people with diabetes and families regard blood glucose testing as an important guide to detecting hypoand hyperglycaemia, both of which compromise comfort [47,48]. It is also a reassuringly familiar routine in a sometimes rapidly changing world.…”

Section: What Do People With Diabetes Think?mentioning

confidence: 99%

“…Significantly, carer wellbeing affects the experiences of the person they provide care for. The latter are likely to report poor quality of life if their carer has depression [47]. Thus, carers can be 'invisible' or 'hidden' patients.…”

Section: Family Carersmentioning

confidence: 99%

“…Generally, they wanted blood glucose monitoring continued until the final stages of dying because 'it helps sort out the causes of things like confusion and pain' [47]. They also wanted to continue taking their GLMs until the terminal stage to manage hyperglycaemia, which they stated caused confusion, frequency and tiredness, what affected their comfort and quality of life.…”

Section: What Do People With Diabetes Think?mentioning

confidence: 99%

“…Several resources and decision aids are available to help people with diabetes and health professionals make care decision by helping them decide an individual's personal risks and leads to the appropriate use of elective procedures [47]. Some useful resources are listed after the reference list.…”

Section: Personalised Palliative End-of-life Care and Advance Care Pmentioning

confidence: 99%

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Diabetes, Palliative and End-of-Life Care

Dunning¹

2017

Highlights on Several Underestimated Topics in Palliative Care

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This chapter provides a brief overview of diabetes prevalence, the associated complications, diabetes-related mortality and management strategies to set the context for discussing palliative and end-of-life care. This chapter highlights: (1) The increasing global focus on palliative and end-of life-care; (2) The relationship among health trajectories, function and palliative and end-of-life care; (3) The imperative to plan care with the individual to achieve personalised care that meets the individual's goals, preferences, values and spiritual needs across the various health trajectories; (4) The need to proactively plan for the transition to palliative and end-of-life care when appropriate and while the individual can make informed decisions. Proactively planning for changing care needs is more likely to achieve care consistent with the individual's goals, values and preferences; (5) The key role of family carers and the effect of caring on carers' health; (6) The importance of having timely, meaningful conversations about palliative and end-of-life care with people with diabetes and their families; and (7) The imperative to ameliorate suffering, optimise quality of life and personalising care.

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Section: Advance Care Planningmentioning

confidence: 93%

Section: What Do People With Diabetes Think?mentioning

confidence: 99%

Section: Family Carersmentioning

confidence: 99%

Section: What Do People With Diabetes Think?mentioning

confidence: 99%

Section: Personalised Palliative End-of-life Care and Advance Care Pmentioning

confidence: 99%

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Diabetes, Palliative and End-of-Life Care

Dunning¹

2017

Highlights on Several Underestimated Topics in Palliative Care

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Acceptance and Commitment Therapy Among Informal Caregivers of People With Chronic Health Conditions

Ye,

Lee,

Xue

et al. 2023

JAMA Netw Open

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ImportanceAlthough there is substantial evidence to suggest the health benefits of acceptance and commitment therapy (ACT) among informal caregivers of people with chronic health conditions, the great variation in intervention designs among published studies limits its application.ObjectivesTo identify intervention characteristics of ACT that are associated with improved psychological health and to assess the acceptability of ACT among informal caregivers.Data SourcesSeven English- and 3 Chinese-language databases without limits on publication dates, the reference lists of previous reviews, and gray literature were searched up to February 2023.Study SelectionRandomized clinical trials comparing the effect of ACT vs control groups on improving psychological health among informal caregivers.Data Extraction and SynthesisTwo reviewers independently screened searched records and extracted data from eligible studies. Random-effects meta-analysis and mixed-effects metaregression were performed. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline was followed.Main Outcomes and MeasuresPsychological health outcomes (eg, depressive symptoms) measured by valid measurements and the acceptability of ACT based on identified parameters.ResultsA total of 29 studies with 2010 participants, published between 2015 and 2023, were identified. ACT showed moderate to large effect sizes for improving psychological health at postintervention assessments (Hedges g range, −0.55 [95% CI, −0.98 to −0.12] to −1.14 [95% CI, −1.83 to −0.45]) and at 1-to-3–month and 4-to-6–month follow-ups (Hedges g range, −0.47 [95% CI, −0.69 to −0.25] to −1.29 [95% CI, −2.33 to −0.24]). Multivariable metaregression analysis regarding intervention characteristics found that ACT delivered in a mixed individual- and group-based format, face-to-face, or through more intervention sessions was associated with greater improvements for experiential avoidance (face-to-face: β = −1.170 [95% CI, −2.020 to −0.319]; number of sessions: β = −0.242 [95% CI, −0.353 to −0.130]), depressive symptoms (mixed delivery format: β = −2.583 [95% CI, −4.845 to −0.321]; face-to-face: β = −1.555 [95% CI, −3.002 to −0.108]), or anxiety symptoms (face-to-face: β = −1.241 [95% CI, −2.337 to −0.146]). In general, ACT had low attrition rates (11%), and participants’ adherence (51%-80%) and satisfactory ratings (72%-95%) lend support to its acceptability.Conclusions and RelevanceThis systematic review and meta-analysis found that ACT was consistently associated with improvements in psychological health, supporting its application to improve informal care for chronic disease management. This review provides specific details on the design parameters of ACT for achieving greater efficacy.

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Longitudinal Analysis of Caregiver Burden in Head and Neck Cancer

Kudrick

Baddour

et al. 2023

JAMA Otolaryngol Head Neck Surg

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ImportanceDespite the critical role of caregivers in head and neck cancer (HNC), there is limited literature on caregiver burden (CGB) and its evolution over treatment. Research is needed to address evidence gaps that exist in understanding the causal pathways between caregiving and treatment outcomes.ObjectiveTo evaluate the prevalence of and identify risk factors for CGB in HNC survivorship.Design, Setting, and ParticipantsThis longitudinal prospective cohort study took place at the University of Pittsburgh Medical Center. Dyads of treatment-naive patients with HNC and their caregivers were recruited between October 2019 and December 2020. Eligible patient-caregiver dyads were 18 years or older and fluent in English. Patients undergoing definitive treatment identified a caregiver as the primary, nonprofessional, nonpaid person who provided the most assistance to them. Among 100 eligible dyadic participants, 2 caregivers declined participation, resulting in 96 enrolled participants. Data were analyzed from September 2021 through October 2022.Main Outcomes and MeasuresParticipants were surveyed at diagnosis, 3 months postdiagnosis, and 6 months postdiagnosis. Caregiver burden was evaluated with the 19-item Social Support Survey (scored 0-100, with higher scores indicating more support), Caregiver Reaction Assessment (CRA; scored 0-5, with higher scores on 4 subscales [disrupted schedule, financial problems, lack of family support, and health problems] indicating negative reactions, and higher scores on the fifth subscale [self-esteem] indicating favorable influence); and 3-item Loneliness Scale (scored 3-9, with higher scores indicating greater loneliness). Patient health-related quality of life was assessed using the University of Washington Quality of Life scale (UW-QOL; scored 0-100, with higher scores indicating better QOL).ResultsOf the 96 enrolled participants, half were women (48 [50%]), and a majority were White (92 [96%]), married or living with a partner (81 [84%]), and working (51 [53%]). Of these participants, 60 (63%) completed surveys at diagnosis and at least 1 follow-up. Of the 30 caregivers, most were women (24 [80%]), White (29 [97%]), married or living with a partner (28 [93%]), and working (22 [73%]). Caregivers of nonworking patients reported higher scores on the CRA subscale for health problems than caregivers of working patients (mean difference, 0.41; 95% CI, 0.18-0.64). Caregivers of patients with UW-QOL social/emotional (S/E) subscale scores of 62 or lower at diagnosis reported increased scores on the CRA subscale for health problems (UW-QOL–S/E score of 22: CRA score mean difference, 1.12; 95% CI, 0.48-1.77; UW-QOL–S/E score of 42: CRA score mean difference, 0.74; 95% CI, 0.34-1.15; and UW-QOL–S/E score of 62: CRA score mean difference, 0.36; 95% CI, 0.14-0.59). Woman caregivers had statistically significant worsening scores on the Social Support Survey (mean difference, −9.18; 95% CI, −17.14 to −1.22). The proportion of lonely caregivers increased over treatment.Conclusions and RelevanceThis cohort study highlights patient- and caregiver-specific factors that are associated with increased CGB. Results further demonstrate the potential implications for negative health outcomes for caregivers of patients who are not working and have lower health-related quality of life.

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How Does Caregiver Well-Being Relate to Perceived Quality of Care in Patients With Cancer? Exploring Associations and Pathways

Cited by 119 publications

References 35 publications

Diabetes, Palliative and End-of-Life Care

Diabetes, Palliative and End-of-Life Care

Acceptance and Commitment Therapy Among Informal Caregivers of People With Chronic Health Conditions

Longitudinal Analysis of Caregiver Burden in Head and Neck Cancer

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