Development and Pilot Implementation of a Patient Oriented Discharge Summary for Critically Ill Patients (PODS-ICU)

Abstract Background - Patients leaving the intensive care unit (ICU) often experience gaps in care due to deficiencies in discharge communication. This study aimed to develop an ICU specific patient-oriented discharge summary tool (PODS-ICU) and pilot test the tool for acceptability and feasibility.Methods - Patient-partners, ICU clinicians, and researchers met to discuss ICU patients’ specific informational needs and design the PODS-ICU through several cycles of iterative revisions. Research team nurses piloted the PODS-ICU with patient and family-caregiver participants in two ICUs in Calgary, Canada. Follow-up surveys on the PODS-ICU and its impact on discharge were administered to participants and ICU nurses.Results – Fifteen patient and family-caregiver participants were administered the PODS-ICU. Most participants felt that their discharge from the ICU was good or better (n=13), and some (n=9) participants reported a good understanding of why the patient was in ICU. Most participants (n=12) reported that they understood ICU events and impacts on the patient’s health. ICU nurses reported that the PODS-ICU was “not reasonable” in their daily clinical workflow due to “time constraint”. Conclusions - PODS-ICU improves patients and family-caregivers’ understanding of ICU events and health-implications but requires better integration with existing care processes to be feasible. Patient or Public Contribution – This work involved patient partners (i.e., individuals with lived experience as patients or family-caregivers) in tool development, study design, participant recruitment, and manuscript preparation.

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Age-dependency in mortality of Finnish family caregivers: a nationwide register-based study

European Journal of Public Health ◽

10.1093/eurpub/ckaa165.1191 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

T M Mikkola ◽

H Kautiainen ◽

M Mänty ◽

M B von Bonsdorff ◽

T Kröger ◽

...

Keyword(s):

General Population ◽

Family Caregivers ◽

Family Caregiver ◽

Causes Of Death ◽

Lower Mortality ◽

All Cause Mortality ◽

The Difference ◽

Caregiver Role ◽

Selection Of

Abstract Purpose Mortality appears to be lower in family caregivers than in the general population. However, there is lack of knowledge whether the difference in mortality between family caregivers and the general population is dependent on age. The purpose of this study was to analyze all-cause mortality in relation to age in family caregivers and to study their cause-specific mortality using data from multiple Finnish national registers. Methods The data included all individuals, who received family caregiver's allowance in Finland in 2012 (n = 42 256, mean age 67 years, 71% women) and a control population matched for age, sex, and municipality of residence (n = 83 618). Information on dates and causes of death between 2012 and 2017 were obtained from the Finnish Causes of Death Register. Flexible parametric survival modeling and competing risk regression adjusted for socioeconomic status were used. Results The total follow-up time was 717 877 person-years. Family caregivers had lower all-cause mortality than the controls over the follow-up (8.1% vs. 11.6%) both among women (hazard ratio [HR]: 0.64, 95% CI: 0.61-0.68) and men (HR: 0.73, 95% CI: 0.70-0.77). Younger adult caregivers had equal or only slightly lower mortality than their controls, but after age 60, the difference increased markedly resulting in over 10% lower mortality in favor of the caregivers in the oldest age groups. Caregivers had lower mortality for all the causes of death studied, namely cardiovascular, cancer, neurological, external, respiratory, gastrointestinal and dementia than the controls. Of these, the lowest was the risk for dementia (subhazard ratio=0.29, 95%CI: 0.25-0.34). Conclusions Older family caregivers have lower mortality than the age-matched controls from the general population while younger caregivers have similar mortality to their peers. This age-dependent advantage in mortality is likely to reflect selection of healthier individuals into the family caregiver role. Key messages The difference in mortality between family caregivers and the age-matched general population varies considerably with age. Advantage in mortality observed in family caregiver studies is likely to reflect the selection of healthier individuals into the caregiver role, which underestimates the adverse effects of caregiving.

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Age-dependency in mortality of family caregivers: a nationwide register-based study

Aging Clinical and Experimental Research ◽

10.1007/s40520-020-01728-4 ◽

2020 ◽

Author(s):

Tuija M. Mikkola ◽

Hannu Kautiainen ◽

Minna Mänty ◽

Mikaela B. von Bonsdorff ◽

Teppo Kröger ◽

...

Keyword(s):

Family Caregivers ◽

Family Caregiver ◽

Causes Of Death ◽

Lower Mortality ◽

The Family ◽

All Cause Mortality ◽

Using Data ◽

Caregiver Role ◽

Selection Of

Abstract Background Evidence on family caregivers' health is conflicting. Aim To investigate all-cause and cause-specific mortality in Finnish family caregivers providing high-intensity care and to assess whether age modifies the association between family caregiver status and mortality using data from multiple national registers. Methods The data include all individuals, who received family caregiver's allowance in Finland in 2012 (n = 42,256, mean age 67 years, 71% women) and a control population matched for age, sex, and municipality of residence (n = 83,618). Information on dates and causes of death between 2012 and 2017 were obtained from the Finnish Causes of Death Register. Results Family caregivers had lower all-cause mortality than the controls over the follow-up (8.1 vs. 11.6%) both among women (socioeconomic status adjusted hazard ratio [HR]: 0.64, 95% CI 0.61–0.68) and men (adjusted HR: 0.73, 95% CI 0.70–0.77). When modelling all-cause mortality as a function of age, younger caregivers had only slightly lower or equal mortality to their controls, but older caregivers had markedly lower mortality than their controls, up to more than 10% lower. Caregivers had a lower mortality rate for all the causes of death studied, namely cardiovascular, cancer, neurological, external, respiratory, gastrointestinal and dementia. The lowest risk was for dementia (subhazard ratio = 0.29, 95% CI 0.25–0.34). Conclusions Older family caregivers had lower mortality than the age-matched general population while mortality did not differ according to caregiver status in young adulthood. This age-dependent advantage in mortality is likely to reflect the selection of healthier individuals into the family caregiver role.

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Family Caregiver Ambassador Support for Family Caregivers of Patients With Hematological Disease

Case Medical Research ◽

10.31525/ct1-nct04039100 ◽

2019 ◽

Author(s):

Keyword(s):

Family Caregivers ◽

Family Caregiver ◽

Hematological Disease

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Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2020-002608 ◽

2020 ◽

pp. bmjspcare-2020-002608

Author(s):

Joaquín T Limonero ◽

Jorge Maté-Méndez ◽

María José Gómez-Romero ◽

Dolors Mateo-Ortega ◽

Jesús González-Barboteo ◽

...

Keyword(s):

Psychometric Properties ◽

End Of Life ◽

Family Caregivers ◽

Advanced Cancer ◽

Emotional Distress ◽

Family Caregiver ◽

Screening Tools ◽

Anxiety And Depression ◽

The Family ◽

End Stage

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

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Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

Innovation in Aging ◽

10.1093/geroni/igaa057.500 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 153-154

Author(s):

Afeez Hazzan

Keyword(s):

Quality Of Life ◽

Quality Of Care ◽

Older People ◽

Family Caregivers ◽

Family Caregiver ◽

Well Being ◽

The United States ◽

People With Dementia ◽

The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

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Use of antidepressants among Finnish family caregivers: a nationwide register-based study

Social Psychiatry and Psychiatric Epidemiology ◽

10.1007/s00127-021-02049-1 ◽

2021 ◽

Author(s):

Tuija M. Mikkola ◽

Hannu Kautiainen ◽

Minna Mänty ◽

Mikaela B. von Bonsdorff ◽

Hannu Koponen ◽

...

Keyword(s):

Relative Risk ◽

Family Caregivers ◽

High Intensity ◽

Matched Control ◽

Age Groups ◽

Control Population ◽

Defined Daily Doses ◽

Male Caregivers ◽

And Gender

Abstract Purpose The purpose of this study was to compare the use of antidepressants over 6 years between family caregivers providing high-intensity care and a matched control population using register-based data. Methods The study includes all individuals, who received family caregiver’s allowance in Finland in 2012 (n = 29,846 females, mean age 66 years; n = 12,410 males, mean age 71 years) and a control population matched for age, sex, and municipality of residence (n = 59,141 females; n = 24,477 males). Information on purchases of antidepressants, including the number of defined daily doses (DDD) purchased, between 2012 and 2017 was obtained from the national drugs reimbursement register. Results During the follow-up, 28.5% of female caregivers and 23.5% of the female controls used antidepressants, while the numbers for males were 21.1% and 16.4%, respectively. Adjusted for socioeconomic status, female caregivers used 43.7 (95% confidence interval 42.4–45.0) and their controls used 36.2 (35.3–37.2) DDDs of antidepressants per person-year. Male caregivers used 29.6 (27.6–31.6) and their controls used 21.6 (20.2–23.0) DDDs of antidepressants per person-year. Among female caregivers, the relative risk for use of antidepressants was similar (about 1.3) from 20 to 70 years, after which the relative risk declined. In male caregivers, the relative risk was highest (about 1.4–1.5) between 45 and 65 years. Conclusions Family caregivers providing high-intensity care use more antidepressants and hence, are likely to have poorer mental health than the age-matched general population in virtually all age groups. However, the magnitude of the higher use varies as a function of age and gender.

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Quality of Care Provided by Family Caregivers of Older People With Dementia: Measurement and Interpretations

Innovation in Aging ◽

10.1093/geroni/igaa057.496 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 152-152

Author(s):

Afeez Hazzan

Keyword(s):

Quality Of Care ◽

Older People ◽

Family Caregivers ◽

Family Caregiver ◽

Primary Reason ◽

People With Dementia ◽

High Level ◽

The Impact ◽

The Relationship

Abstract Family caregivers of older people living with dementia are relatives, friends, or neighbors who provide assistance related to this condition, but who are unpaid for the services they provide. Although caregiving could be personally rewarding, many caregivers report a high level of strain. Compared to caregivers of older adults who do not have dementia, family caregivers of older people living with dementia report lower quality-of-life (QoL). In a published systematic review examining the relationship between family caregiver QoL and the quality of care provided, only one study was found to be somewhat relevant. The study suggested that the primary reason for an absence of research into the link between family caregiver QoL and quality of care was the absence of a questionnaire for measuring quality of care in dementia. Therefore, any attempt to investigate the impact of caregiver QoL on the care provided to older people with dementia must first address the lack of an instrument to measure quality of care. To address this issue, we interviewed approximately 20 family caregivers in order to elicit feedback on measurements and interpretation of the quality of care provided by family caregivers of older people living with dementia. Content analysis of the interview transcripts revealed that the quality of relationships with family, caregiver availability to provide or supervise care, and availability of paid or volunteer help are important for the quality of care provided. These results have important implications, particularly for the development of an instrument to measure quality of care in dementia.

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Caring for Others: Internet Health Care Support Intervention for Family Caregivers of Persons with Alzheimer's, Stroke, or Parkinson's Disease

Families in Society The Journal of Contemporary Social Services ◽

10.1606/1044-3894.3435 ◽

2005 ◽

Vol 86 (3) ◽

pp. 375-383 ◽

Cited By ~ 27

Author(s):

Elsa Marziali ◽

Peter Donahue ◽

Gillian Crossin

Keyword(s):

Family Caregivers ◽

Group Process ◽

Psychosocial Support ◽

Clinical Intervention ◽

Group Interactions ◽

Face To Face ◽

Ethical Implications ◽

Response Data ◽

Participant Response

The purpose of the project was to emulate face-to-face psychosocial support group process in an Internet videoconferencing environment and explore the benefits for 34 family caregivers of persons with neurodegenerative disease. Caregivers were provided with computer equipment and trained to access a password-protected Web site. Using videoconferencing software, each group of 6 members met with a facilitator online weekly for 10 weeks. Each caregiver was interviewed at 6-month follow-up. Participant response data were generated through qualitative analysis of group process and follow-up interviews. The analysis showed that the virtual group process closely paralleled face-to-face group interactions. At follow-up, 90% of the caregivers reported that the online group experience had been “very” or “overall” positive and that the group had helped them cope with the stresses of caregiving. The professional and ethical implications of providing a clinical intervention using the Internet are discussed.

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Children with Medical Complexity: Challenges and Opportunities for Human Factors/Ergonomics

Proceedings of the Human Factors and Ergonomics Society Annual Meeting ◽

10.1177/1071181320641162 ◽

2020 ◽

Vol 64 (1) ◽

pp. 697-701

Author(s):

Hanna Barton ◽

Ryan Coller ◽

Sara Finesilver ◽

Christopher Lunsford ◽

Rupa S. Valdez ◽

...

Keyword(s):

Human Factors ◽

Family Caregivers ◽

Family Caregiver ◽

Children With Medical Complexity ◽

Patient Journey ◽

Medical Complexity ◽

Challenges And Opportunities ◽

Vulnerable Patient

For vulnerable patient populations, such as children with medical complexity (CMC), the patient journey is fraught with challenges. By providing a range of perspectives including clinicians, a family caregiver, and Human Factors/Ergonomics (HF/E) experts, the present panel will describe the unique opportunities for HF/E to design jointly optimized systems for CMC and their family caregivers, including an explication of some of the specific challenges and complexities related to studying the work of and designing systems for this population. We will also highlight the ways in which HF/E could help in the design of solutions to improve outcomes for families.

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