Lived experiences of informal caregivers of people with chronic musculoskeletal pain: a systematic review and meta-ethnography

Background: People with chronic pain often seek support from friends and family for everyday tasks. These individuals are termed informal caregivers. There remains uncertainty regarding the lived experiences of these people who care for individuals with chronic musculoskeletal pain. The aim of this article is to synthase the evidence on the lived experiences of informal caregivers providing care to people with chronic musculoskeletal pain. Methods: A systematic literature review was undertaken of published and unpublished literature databases including EMBASE, MEDLINE, CINAHL, PubMed, the WHO International Clinical Trial Registry and ClinicalTrials.gov registry (to September 2019). Qualitative studies exploring the lived experiences of informal caregivers of people with chronic musculoskeletal pain were included. Data were synthesised using a meta-ethnography approach. Evidence was evaluated using the Critical Appraisal Skills Programme qualitative appraisal tool. Results: From 534 citations, 10 studies were eligible (360 participants: 171 informal caregivers of 189 care recipients). The evidence was moderate quality. Seven themes arose: the relationship of caregivers to healthcare professionals; role reversal with care recipients; acting the confidant to the care recipient; a constant burden in caregiving; legitimising care recipient’s condition; knowledge and skills to provide caregiving; and the perception of other family members and wider society to the caregiver/care recipient dyad. Conclusion: The lived experiences of caregivers of people with chronic musculoskeletal pain is complex and dynamic. There is an inter-connected relationship between caregivers, care recipients and healthcare professionals. Exploring how these experiences can be modified to improve a caregiving dyad’s lived experience is now warranted.

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NOTHING FOR ME WITHOUT ME: CAREGIVER TRAINING NEEDS

Innovation in Aging ◽

10.1093/geroni/igz038.1419 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S386-S387

Author(s):

Jeananne Elkins ◽

Phillip Rustin

Keyword(s):

Healthy Eating ◽

Healthcare Professionals ◽

Informal Caregivers ◽

Training Needs ◽

Care Recipient ◽

Caregiver Training ◽

Health Issues ◽

Caregiver Support ◽

Care Recipients ◽

Person With Dementia

Abstract Over 34 million informal caregivers provide care to an adult aged 50 or older with over 15 million caregivers caring for a person with dementia. People often become caregivers unexpectedly. For most caregivers little training is available, and most skills are learned “on the job”. The objective of this study is to determine the training needs of caregivers. An anonymous survey was conducted at two caregiver conferences. Caregivers were asked to name up to 5 training needs. For this abstract we report the percent of responses by caregivers. Seventy-nine caregivers completed the survey. Seventy-seven percent (77%) of the caregivers cared for a person over age 50. Increased knowledge of health issues (17%) and resources (17%) were the highest responses. Training in physical caregiving skills i.e. bathing (10%), transfers (8%) and diaper changes (4%) were voiced as important. Training for improving personal interactions with the care recipient was important (9%) as well as how to practice patience, kindness and compassion (7%). Two areas where training is available but perhaps not accessible – caregiver support (9%) and care recipient behaviors (8%) were all important to caregivers. Healthy eating (9%) and stopping or limiting driving by the care recipient (2%) were enunciated as areas requiring training. Many of the training needs should be addressed by healthcare professionals in their interactions with caregivers and care recipients. Programs are available online, but caregivers are not accessing this training. To improve outcomes for both caregivers and care recipients targeted training for caregivers is needed.

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Potentially preventable hospitalizations in dementia: family caregiver experiences

International Psychogeriatrics ◽

10.1017/s1041610217000217 ◽

2017 ◽

Vol 29 (7) ◽

pp. 1201-1211 ◽

Cited By ~ 16

Author(s):

Tatiana Sadak ◽

Susan Foster Zdon ◽

Emily Ishado ◽

Oleg Zaslavsky ◽

Soo Borson

Keyword(s):

Lived Experience ◽

Family Caregivers ◽

Care Recipient ◽

Preventable Hospitalizations ◽

Health Crisis ◽

Care Recipients ◽

People With Dementia ◽

Mitigating Factors ◽

Health Event ◽

Caregiver Experiences

ABSTRACTBackground:Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions.Methods:Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers’ reactions to the hospitalization and recollections of the events leading up to it.Results:Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises.Conclusions:This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

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The (cost-)effectiveness and cost-utility of a novel integrative care initiative for patients with chronic musculoskeletal pain: the pragmatic trial protocol of Network Pain Rehabilitation Limburg

10.21203/rs.3.rs-16080/v2 ◽

2020 ◽

Author(s):

Cynthia Lamper ◽

Ivan PJ Huijnen ◽

Mariëlle EJB Goossens ◽

Bjorn Winkens ◽

Dirk Ruwaard ◽

...

Keyword(s):

Primary Care ◽

Cost Effectiveness ◽

Musculoskeletal Pain ◽

Healthcare Costs ◽

Healthcare Professionals ◽

Cost Utility ◽

Chronic Musculoskeletal Pain ◽

Local Networks ◽

Quadruple Aim ◽

The Cost

Abstract Background: Rehabilitation care for patients with chronic musculoskeletal pain (CMP) is not optimally organized. The Network Pain Rehabilitation Limburg 2.0 (NPRL2.0) provides integrated care with a biopsychosocial approach and strives to improve the Quadruple Aim outcomes: pain-related disability of patients with CMP; experiences of care of patients with CMP; meaning in the work of healthcare professionals; and healthcare costs. Firstly, in this study, the effectiveness (with regard to the functioning and participation of patients) of primary care for patients with CMP will be assessed, comparing care organized following the NPRL2.0 procedure with usual care. Secondly, the cost-effectiveness and cost-utility with regard to health-related quality of life and healthcare costs will be assessed. And thirdly, the effect of duration of participation in a local network in primary care will be studied. Methods: In this pragmatic study, it is expected that two local networks with 105 patients will participate in the prospective cohort study and six local networks with 184 patients in the stepped-wedge based design. Healthcare professionals in the local networks will recruit patients. Inclusion criteria: age ≥ 18 years; having CMP; willing to improve functioning despite pain; and adequate Dutch literacy. Exclusion criteria: pregnancy; and having a treatable medical or psychiatric disease. Patients will complete questionnaires at baseline (T1), 3 months (T2), 6 months (T3), and 9 months (T4). Questionnaires at T1 and T4 will include the Pain Disability Index and Short Form Health Survey. Questionnaires at T1, T2, T3, and T4 will include the EQ-5D-5L, and iMTA Medical Consumption and Productivity Cost Questionnaires. Outcomes will be compared using linear mixed-model analysis and costs will be compared using bootstrapping methods. Discussion: NPRL2.0 is a multidimensional, complex intervention, executed in daily practice, and therefore needing a pragmatic study design. The current study will assess NPRL2.0 with respect to the Quadruple Aim outcomes: patient health and costs. This will provide more information on the (cost-) effectiveness of the organization of care in a network structure regarding patients with CMP. The other two Quadruple Aim outcomes will be examined alongside this study. Trial registration: Netherlands Trial Register: NL7643

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Perspectives of implementing the biopsychosocial model to treat chronic musculoskeletal pain in primary health care

Pain Management ◽

10.2217/pmt-2020-0024 ◽

2020 ◽

Author(s):

Cláudio Gregório Nuernberg Back ◽

Richard Eloin Liebano ◽

Mariana Arias Avila

Keyword(s):

Health Care ◽

Primary Health Care ◽

Musculoskeletal Pain ◽

Biopsychosocial Model ◽

Healthcare Professionals ◽

Chronic Musculoskeletal Pain ◽

Biopsychosocial Approach ◽

Unified Health System ◽

Primary Health ◽

The Common

Aim: To propose actions to organize healthcare of people with chronic musculoskeletal pain (CMP) into a biopsychosocial approach. Materials & methods: Narrative overview with the Brazilian Unified Health System as archetype to propose the implementation of a biopsychosocial approach to manage CMP. Results: Healthcare systems often use biomedical model for CMP management, which may explain the increase of demand and costs of CMP management. This is significant in Primary Health Care, where the healthcare professionals have difficulty with evaluating and treating psychosocial factors. Conclusion: The present perspective selected some actions that are part of the common procedures in Brazil’s Primary Health Care and proposed a protocol of amplified care for CMP management in all levels: orientation, health promotion, prevention and rehabilitation.

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Researching lived experience in health care: Significance for care ethics

Nursing Ethics ◽

10.1177/0969733010389253 ◽

2011 ◽

Vol 18 (2) ◽

pp. 232-242 ◽

Cited By ~ 20

Author(s):

Bernadette Dierckx de Casterlé ◽

Sofie TL Verhaeghe ◽

Marijke C Kars ◽

Annemarie Coolbrandt ◽

Marleen Stevens ◽

...

Keyword(s):

Health Care ◽

Decision Making ◽

Qualitative Research ◽

Lived Experience ◽

Lived Experiences ◽

Ethical Decision ◽

Ethical Decision Making ◽

Care Ethics ◽

Care Recipients ◽

Imminent Death

The aim of this article is to demonstrate the usefulness of qualitative research for studying the ethics of care, bringing to light the lived experience of health care recipients, together with the importance of methods that allow reconstruction of the processes underlying this lived experience. Lived experiences of families being approached for organ donation, parents facing the imminent death of their child and patients being treated using stem cell transplantation are used to illustrate how ethical principles are differentiated, modified or contradicted by the narrative context of persons concerned. The integration of empirical data into ethics will help caregivers in their ethical decision making and may enrich care ethics as a narrative and interpretative field.

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The (cost-)effectiveness and cost-utility of a novel integrative care initiative for patients with chronic musculoskeletal pain: the pragmatic trial protocol of Network Pain Rehabilitation Limburg

10.21203/rs.3.rs-16080/v1 ◽

2020 ◽

Author(s):

Cynthia Lamper ◽

Ivan PJ Huijnen ◽

Mariëlle EJB Goossens ◽

Bjorn Winkens ◽

Dirk Ruwaard ◽

...

Keyword(s):

Primary Care ◽

Cost Effectiveness ◽

Musculoskeletal Pain ◽

Healthcare Costs ◽

Healthcare Professionals ◽

Cost Utility ◽

Chronic Musculoskeletal Pain ◽

Local Networks ◽

Quadruple Aim ◽

The Cost

Abstract Background: Rehabilitation care for patients with chronic musculoskeletal pain (CMP) is not optimally organized. The Network Pain Rehabilitation Limburg 2.0 (NPRL2.0) provides integrated care with a biopsychosocial approach and strives to improve the Quadruple Aim outcomes: pain-related disability of patients with CMP; experiences of care of patients with CMP; meaning in the work of healthcare professionals; and healthcare costs. Firstly, in this study, the effectiveness (with regard to the functioning and participation of patients) of primary care for patients with CMP will be assessed, comparing care organized following the NPRL2.0 procedure with usual care. Secondly, the cost-effectiveness and cost-utility with regard to health-related quality of life and healthcare costs will be assessed. And thirdly, the effect of duration of participation in a local network in primary care will be studied. Methods: In this pragmatic study, it is expected that two local networks with 105 patients will participate in the prospective cohort study and six local networks with 184 patients in the stepped-wedge based design. Healthcare professionals in the local networks will recruit patients. Inclusion criteria: age ≥ 18 years; having CMP; willing to improve functioning despite pain; and adequate Dutch literacy. Exclusion criteria: pregnancy; and having a treatable medical or psychiatric disease. Patients will complete questionnaires at baseline (T1), 3 months (T2), 6 months (T3), and 9 months (T4). Questionnaires at T1 and T4 will include the Pain Disability Index and Short Form Health Survey. Questionnaires at T1, T2, T3, and T4 will include the EQ-5D-5L, and iMTA Medical Consumption and Productivity Cost Questionnaires. Outcomes will be compared using linear mixed-model analysis and costs will be compared using bootstrapping methods. Discussion: NPRL2.0 is a multidimensional, complex intervention, executed in daily practice, and therefore needing a pragmatic study design. The current study will assess the NPRL2.0 with respect to the Quadruple Aim’s outcomes of effectiveness of healthcare and economic consequences. The other two Quadruple Aim outcomes will be examined alongside this study, providing a broad scope of the performance of NPRL2.0. Trial registration: Netherlands Trial Register: NL7643; Registered 5 April 2019. https://www.trialregister.nl/trial/7643

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Money Follows the Person and Informal Caregivers: Insights Into a New Stage of the Caregiving Career

Innovation in Aging ◽

10.1093/geroni/igaa057.340 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 103-103

Author(s):

Julie Robison ◽

Noreen Shugrue ◽

Chanee Fabius ◽

Richard Fortinsky ◽

Martha Porter ◽

...

Keyword(s):

Process Model ◽

Informal Caregivers ◽

Well Being ◽

Care Recipient ◽

Career Stage ◽

Care Recipients ◽

White Caregivers ◽

Recipient Age ◽

Positive Feelings ◽

Type Data

Abstract The Money Follows the Person (MFP) program transitions people to the community after extended institutional stays. This study examines effects of this transition on informal caregivers in this new caregiving career stage. Analyses explore whether and how MFP affects caregivers according to caregiver race/ethnicity, and care recipient age and disability type. Data come from surveys with 686 caregivers of persons in Connecticut’s MFP from November 2014-November 2018. Using Pearlin’s Caregiver Stress Process Model, bivariate and multivariate analyses examine predictors of multiple caregiver well-being indicators. Care recipients: older adults (50%), and younger persons with physical (35%), mental health (8%) or developmental (7%) disabilities. Caregivers: non-Hispanic White (62%), non-Hispanic Black (24%), and Hispanic (14%). Caregivers’ average assistance is 5 days/week, 6 hours/day, with 3 activities of daily living and 5 instrumental activities; 11% are paid for caregiving. Compared to other community-based samples, they report low mean levels of burden (4.7 of 16), anxiety (2.2 of 18) and depressive symptoms (31%), and high positive feelings about caregiving (9.5 of 12). A majority feel less stressed (60%) or no change in stress (20%) compared to before and during the institutional stay. Caregivers across the four care recipient groups don’t differ on most outcomes, although more caregivers of people with developmental disabilities (82% vs. 55-61%) report less stress once the person transitions. Black and Hispanic caregivers report more intensive caregiving, but White caregivers report more burden and subjective stress. Findings illustrate the benefits of programmatic support during a newly defined post-institutionalization caregiving career stage.

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Caregivers’ interactions with health care services – Mediator of stress or added strain? Experiences and perceptions of informal caregivers of people with dementia – A qualitative study

Dementia ◽

10.1177/1471301217751226 ◽

2018 ◽

Vol 18 (7-8) ◽

pp. 2526-2542 ◽

Cited By ~ 6

Author(s):

Despina Laparidou ◽

Jo Middlemass ◽

Terence Karran ◽

A Niroshan Siriwardena

Keyword(s):

Health Care ◽

Health Care Services ◽

Process Model ◽

Healthcare Professionals ◽

Informal Caregivers ◽

Well Being ◽

Care Recipient ◽

Stress Process ◽

Care Services ◽

People With Dementia

Background There are an estimated 46.8 million people worldwide living with dementia in 2015, being cared for usually by family members or friends (informal caregivers). The challenges faced by informal caregivers often lead to increased levels of stress, burden and risk of care-recipient institutionalisation. Aim The overarching aim of this study was to explore the experiences and perceptions of informal caregivers of people with dementia when interacting with the health care system, and whether the support received acted as a mediator of caregiver stress. The secondary aim was to investigate healthcare professionals’ views and current practice regarding people with dementia and their interactions with informal caregivers. Method We employed a qualitative research design, using focus groups and one face-to-face interview with a purposive sample of informal caregivers and healthcare professionals in Lincolnshire, UK. Data were collected between March and July 2015. We used the stress-process model of stress in caregivers as a theoretical framework. Results We interviewed 18 caregivers and 17 healthcare professionals. Five themes, mapped to the stress-process in caregivers’ model, captured the main challenges faced by caregivers and the type of support they wanted from health care services. Primary stressors included the challenge of diagnosing dementia; caregivers’ needs and expectations of an in-depth knowledge and understanding of dementia from healthcare professionals; and need for carer education. Secondary role strain included lack of support and mismatch of communication and expectations. Caregiver involvement in monitoring care and disease was a potential mediator tool. Conclusions Fragmentation of dementia care services, lack of training for healthcare professionals and the dearth of information for caregivers means health care services are only partially fulfilling a support role. In turn, lack of support may be intensifying caregiver stress leading to worsening in their health and well-being; thus, potentially increasing the risk of institutionalisation of their care-recipient.

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Informal Caregivers’ Perceptions of Burdens and Benefits Predict Greater Confidence in Their Abilities

Innovation in Aging ◽

10.1093/geroni/igab046.2933 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 802-803

Author(s):

Cristina de Rosa ◽

Rebecca Lorenz ◽

Suzanne Sullivan

Keyword(s):

Health Care Providers ◽

Informal Caregivers ◽

Care Recipient ◽

National Study ◽

Future Research ◽

Care Providers ◽

Chi Square ◽

Final Model ◽

Care Recipients ◽

Difficult Situations

Abstract Informal caregivers experience both burdens and benefits from caregiving. This analysis aimed to determine whether caregiver perceptions of burdens and benefits predicted feelings of confidence in their abilities. In the National Study of Caregiving (NSOC) Round II (2015), we identified 1,390 caregivers as “primary” for providing the greatest number of care hours in the past month to individuals age 65 and over. Logistic regression was performed to assess the influence of primary caregivers’ gender, age, relationship to their care recipients, and self-reported indications of burdens and benefits on the odds that they would report confidence in their abilities. Caregivers were more likely to report confidence in their abilities when caregiving taught them to deal with difficult situations (OR=5.93, 95% CI [4.67, 7.54]), gave them satisfaction that their care recipient was well cared for (OR=1.97, 95% CI [1.26, 3.04]), and when caregiving brought them closer to their care recipient (OR=2.61, 95% CI [2.02, 3.36]). Caregivers were less likely to feel confident if they reported frequent changes in routine (OR=.78, 95% CI [.64, .96]). The final model predicted confidence (chi-square = 525.383 [4] p < .001) and correctly classified 78.7% of cases. All other variables were non-significant. These findings suggest that confidence in abilities is influenced by caregivers’ perception of learning to handle difficult situations, satisfaction, closeness to the recipient, and burdens associated with changes in routine. Future research should further explore burdens and benefits of caregiving. Health care providers should routinely assess caregivers and provide referrals for additional resources.

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Vietnamese Families' Strength and Resilience and Healthcare Professionals’ Role During the Pandemic

Innovation in Aging ◽

10.1093/geroni/igab046.1383 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 358-359

Author(s):

Christina Miyawaki ◽

Minhui Liu ◽

Kyriakos Markides

Keyword(s):

Social Exchange ◽

Low Socioeconomic Status ◽

Life Stress ◽

Social Exchange Theory ◽

Healthcare Professionals ◽

Care Recipient ◽

Logistic Regression Models ◽

Care Recipients ◽

Positive Caregiving ◽

The U.S

Abstract Traumatic escape from Vietnam in 1975 brought 1.3 million Vietnamese refugees to the U.S. Today, Vietnamese are the largest Asian subethnic group in Houston, Texas (81,000+), making Houston the 3rd largest Vietnamese-populated city in the U.S. Despite these numbers, health research on Vietnamese population is limited. To address this gap, we developed the Vietnamese Aging and Care Survey and collected data on Vietnamese older adults (≥65 years) and their caregivers (N=199). The purpose of this study was to examine the association between caregivers’ caregiving characteristics and care recipients’ mental health (N=58 dyads). Descriptive statistics and logistic regression models were used. Caregivers were on average 53 years-old, Vietnam-born (97%), and working (66%). The majority (84%) lived with their care recipients and provided care for 20+ hours/week (69%) in good/excellent health (76%). Care recipients were on average 75 years-old, Vietnam-born (100%) in fair/poor health (81%). Regression results showed stressed caregivers with more-depressed care recipients (OR=1.47, 95%CI:1.02, 2.13) but positive caregiving experiences (OR=0.85, 95%CI:0.74, 0.97) and burdened caregivers (OR=0.79, 95%CI:0.65, 0.96) with less-depressed care recipients. We found the association between stressed caregivers and depressed care recipients (Life Stress Paradigm), but care recipients becoming a “helpful company” reduces caregiver burden and care recipients’ depression (Social Exchange Theory). Vietnamese families live in multigenerational households within ethnic enclaves and remain a tightly-knit family unit showing resilience to their low socioeconomic status (≤25K, 91%). Leveraging a family as their strength, healthcare professionals should take a caregiver-care recipient dyad approach when planning COVID-19 pandemic interventions in Vietnamese communities.

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