Addressing Family Caregivers Research Articles

Short-term outcome of personalized theory-based pharmaceutical care service on the medication administration problems of family caregivers: a pre-post intervention study.

Family caregivers face many problems during administration of medications. Pharmacists are reliable and accessible healthcare providers in addressing family caregivers' medication related inquiries in primary care. This study aimed to evaluate theshort-term outcome of apersonalized theory-based pharmaceutical care service on the medication administration problems of family caregivers. This pre-post intervention study was carried out among family caregivers at a community pharmacy in Istanbul, Türkiye from May through December 2022. The service was developed by mapping problems using theTheoretical Domains Framework and selecting related behavioural change techniques. The primary outcome was the change in the scores on the Turkish version of the Family Caregiver Medication Administration Hassles Scale (FCMAHS-TR) from baseline to the one-month follow-up assessment. Secondary outcomes were their ability to read health related materials, care burden, and satisfaction. Among family caregivers (n = 100), total score of FCMAHS-TR was significantly reduced after receiving theory based pharmaceutical care service (median [IQR]23.0 [17.0-27.0] vs 17.0 [10.3-20.0]; p < 0.001). The proportion of family caregivers with high ability to read health related materials was significantly increased (34.0% vs 48.0%; p < 0.05) with non-significant change in the proportion of family caregiver with high burden (97.0% vs 94.0%; p > 0.05). Younger family caregivers had significantly higher scores on the Turkish version of Patient-Oriented Pharmacy Services Questionnaire (PSPSQ) 2.0 when compared with the older ones (≥ 65 y) (p < 0.05). Family caregivers' medication administration problems werereduced after receiving thetheory based pharmaceutical care service. Long term impact and national implementation of this service should be assessed in the further studies.

Family physicians’ preferences for education to support family caregivers: a sequential mixed methods study

BackgroundOne in four Canadians is a family caregiver. Family caregivers (carers, care-partners) are relatives or chosen family, friends, or neighbors who provide 75 to 90% of the care for people with physical or mental illness, disabilities, or frailty living in community homes and assist with 15 to 30% of the care in congregate care. However, a recent (2022) Statistics Canada population health study reports 44% of family caregivers are distressed. Family physicians and primary care teams are well-positioned to support family caregivers; yet, family caregiver needs assessments tend to be ad hoc and their most common needs remain unmet. Research recommends training healthcare professionals to enhance their knowledge and skills to support family caregivers.MethodsThe objective of this sequential mixed methods research, a survey followed by qualitative interviews, was to explore family physicians’ desire and preferences for education about supporting family caregivers. 85 family physicians completed the online survey and eight took part in the interviews. Results from the survey and interviews were compared, contrasted, and interpreted together.ResultsPrimary care physicians expressed a desire to be better equipped to assess and support FCGs’ needs. Even though most physicians (61%) were very/confident about addressing family caregivers’ needs, 72% were highly/interested in education to support family caregivers of their patients. Topics with the most interest were assessing family caregivers needs in an organized way, assisting family caregivers to access resources, and address system and practice barriers to support family caregivers. The overarching theme running through the interviews was physicians hope for education to help change the patient-focused culture to inclusion of FCGs. The three themes reflect physicians’ conviction about including family caregivers in patient care: We need to take care of their caregivers, Practice and system barriers thwart including family caregivers, and Practical education might help.ConclusionsThis study of family physicians’ preferences for education to support family caregivers will inform the development of education about supporting family caregivers for family physicians and trainees.

Older family caregivers’ inadequate diet and social and health inequalities

Abstract Background Family caregivers may experience financial vulnerabilities due to their caregiving role, affecting their ability to afford appropriate food and ensure optimal nutrient intake. Therefore, this cross-sectional study aimed to assess the extent to which there are diet-related disparities among older family caregivers. Methods We included 125 family caregivers from Eastern Finland (mean age 74 y). Data on family caregivers’ health, nutritional status, and sociodemographic factors were collected at their households between June 2019 and December 2019. First, we assessed the sociodemographic factors associated with family caregivers’ inadequate diet. Then, we evaluated diet-related health disparities. The associations and predictors of diet-related disparities were assessed using the independent samples t-test, χ2-test, and binary logistic regression. Results The preliminary results show that family caregivers experiencing subjective poverty were less likely to consume two or more portions of fruit and vegetables per day (odds ratio = 0.11; 95% confidence interval 0.02-0.72; p = 0.021) and were more likely to be overweight. Furthermore, family caregivers’ inadequate diet (i.e., lack of daily fruit and vegetables and risk of malnutrition) was further associated with several health conditions, including comorbidity, depression, diabetes (type I and II), and osteoporosis. Conclusions Family caregivers have diet-related disparities, which may further lead to health inequalities. Family caregivers’ diet-related disparities require increasing attention in healthcare. Thus, addressing family caregivers’ food insecurity risk could enhance their health equity. Key messages • Older family caregivers’ inadequate diet is associated with social and health inequalities. • We must assess the root causes of diet-related disparities among older family caregivers and the broad consequences to find solutions to narrow the inequalities.

Older family caregivers' diet-related disparities: Cross-sectional evidence from Finland.

Some older family caregivers experience financial vulnerabilities due to their caregiving role, which may affect their ability to afford appropriate food. This study aimed to assess the extent to which there are diet-related disparities among older family caregivers in Eastern Finland. This study is based on the multidisciplinary LifEstyle, NutriTion and Oral health in caregivers (LENTO) study. In total, 125 family caregivers were included. Data were collected between June and December 2019. Participants were assessed on health, nutritional status and sociodemographic factors. The associations and predictors of diet-related disparities were assessed using the independent samples t-test, ANOVA-test, χ2 -tests and binary logistic regression. The mean age of family caregivers was 74 years (SD = 8). Most were female (72%), 20% had malnutrition risk and 30% reported having 'moderately enough money' or less, which was identified as 'subjective poverty'. Family caregivers experiencing subjective poverty were less likely to consume two or more portions of fruit and vegetables daily and were more likely overweight. Study participants' diet-related disparities were further associated with several health inequalities, including comorbidity, depression, diabetes (Type I or II) and osteoporosis. Older family caregivers have diet-related disparities, further associated with health inequalities. Family caregivers' diet-related disparities require increasing attention in healthcare. Addressing family caregivers' food insecurity risk would enhance their health equity. Lack of assessment of diet-related disparities will only deepen health inequalities.

Contestations in coping with elderly care: an intersectional analysis addressing family caregivers in Germany

This article addresses inequalities in elderly care from the perspective of family caregivers. By applying an intersectional perspective, we examine the interdependencies of, and interrelations between, the four structural categories of family caregivers’ socio-economic status, gender, ethnicity and employment status, as well as differences in their ability to cope with providing care. We have analysed 20 in-depth semi-structured interviews with family carers in Germany. A high socio-economic status alone did not prove to be sufficient for the good functioning of care arrangements, and ethnicity as a dividing line turned out to be of limited importance. The core result is a typology of five ‘types of coping with care’, three of them with ‘rather successful’ and two with ‘rather precarious’ coping strategies. The types differ in the way difference categories interact. Across all types, it became evident that self-care orientation, self-care action as well as self-determination and control are central for a ‘rather successful’ coping.

A person-centred intervention remotely targeting family caregivers’ support needs in the context of allogeneic hematopoietic stem cell transplantation—a feasibility study

PurposeAllogeneic hematopoietic stem cell transplantation (HSCT) is an intensive curative treatment that increases family caregivers’ burden. The aim of this study was to explore the feasibility of remotely assessing and addressing family caregivers’ support needs in terms of demand and acceptability using the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the HSCT context.MethodsCSNAT-I consists of an evidence-based tool and a five-stage person-centred process. The intervention was performed remotely by two designated nurses from two HSCT centres, one before HSCT and the second 6 weeks after (November 2020 to March 2021). To capture the experiences of using CSNAT-I, interviews were conducted with family caregivers and reflections were gathered from the designated nurses.ResultsOf 34 eligible family caregivers, 27 participated, 70% were partners and the rest children, siblings or other relatives. The main support needs were knowing what to expect in the future and dealing with your feelings and worries. The most frequent support actions according to CSNAT-I were psychological support and medical information. Four categories summarised family caregivers and designated nurses’ experiences: CSNAT-I was relevant and became an eye opener; nurses’ experiences were important for enabling trustful CSNAT-I conversations; CSNAT-I provided family caregivers with support and a sense of security; and CSNAT-I gave family caregivers insight and enabled change.ConclusionBoth family caregivers and designated nurses experienced that using CSNAT-I in an HSCT context was feasible and had the potential to provide valuable support for most of the participating family caregivers.

How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study

BackgroundFamily caregivers are crucial in providing end-of-life care at home. Without their care, it would be difficult for many patients to die at home. In addition to providing care, family caregivers also need support for themselves. Nurses could play an important role in supporting family caregivers, but little is known about if and how they do so. The aim of this study is to explore how nurses currently approach and support family caregivers in end-of-life home care and which factors influence their support of family caregivers.MethodsData were collected using semi-structured interviews with 14 nurses from nine home care organisations in the Netherlands, in 2018. Interviews were audio-taped, transcribed verbatim and analysed using a thematic analysis approach.ResultsWe identified two underlying nursing perspectives on supporting family caregivers: an instrumental perspective (seeing family caregivers mostly as collaborative partners in care) and a relational perspective (seeing family caregivers as both providing and needing support). All the interviewed nurses stated that they pay attention to family caregivers’ needs. The activities mentioned most often were: identification of support needs, practical education, support in decision-making about the patient’s treatment, emotional support, and organising respite care, such as night care, to relieve the family caregiver. The provision of support is usually based on intuition and experience, rather than on a systematic approach. Besides, nurses reported different factors at the individual, organisational and societal levels that influenced their support of family caregivers, such as their knowledge and experience, the way in which care is organised, and laws and regulations.ConclusionsNurses tend to address family caregivers’ needs, but such care was affected by various factors at different levels. There is a risk that nursing support does not meet family caregivers’ needs. A more reflective approach is needed and evidence-based needs assessment tools may help nurses to systematically assess family caregivers’ needs and to provide appropriate support.

Unmet family caregiver training needs associated with acute care utilization during home health care.

Medicare-certified home health agencies are required to offer family caregiver training, but little is known regarding the potential impact of this training on outcomes during home health care. We estimate the proportion of family caregivers assisting Medicare home health patients who have unmet training needs and examine whether these unmet training needs are associated with older adults' risk of acute care utilization during home health care. Observational, nationally representative cohort study. Linked National Health and Aging Trends Study, Outcome and Assessment Information Set (OASIS), Medicare Provider of Services file, and Medicare claims data from 2011 to 2016. Thousand two hundred seventeen (weighted n=5,870,905) community-living Medicare beneficiaries who received home health care between 2011 and 2016. Family caregivers' unmet training needs measured from OASIS and Medicare claims; home health patients' acute care utilization (including emergency department use and hospitalization) measured from OASIS. Rates of unmet need for training varied by activity, from 8.2% of family caregivers assisting with household chores to 16.0% assisting with self-care tasks. After controlling for older adult and home health provider characteristics, older adults whose family caregivers had an unmet need for training with any caregiving activity were twice as likely to incur acute care utilization during their home health episode (adjusted odds ratio [aOR]: 2.01, 95% confidence interval [CI]: 1.20-3.38). This relationship held across specific caregiving activities including household chores (aOR: 1.98; 95% CI: 1.13-3.46), medication management (aOR: 2.50; 95% CI: 1.46-4.26), patient supervision (aOR: 2.92; 95% CI: 1.36-6.24), and self-care tasks (aOR: 3.11; 95% CI: 1.62-6.00). Unmet training needs among family caregivers are associated with greater likelihood of acute care utilization among Medicare beneficiaries receiving home health care. Identifying and addressing family caregivers' training needs may reduce older adults' risk of acute care utilization during home health care.

Assessing and Addressing Family Caregivers' Needs and Risks in Primary Care.

To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care. Cross-sectional, national mail-based survey. American Medical Association Masterfile database. U.S. primary care physicians (N = 106), including general internists (n = 44) and geriatricians (n = 62). Approaches to assessing and addressing family caregivers' needs and risks; barriers and facilitators to conducting caregiver assessments. Few respondents reported conducting a formal caregiver assessment using a standardized instrument in the past year (10.5%). Informal, unstructured discussions about caregivers' needs and risks were common and encompassed a range of issues, most frequently caregivers' management of patients' safety (41.0%), ability to provide assistance (40.0%), and need for support (40.0%). To address caregiver needs, most respondents endorsed referring patients to services (e.g., adult day care, home care) (69.8%), assessing the appropriateness of the patient's living situation (67.9%), and referring caregivers to community agencies (63.2%). Lack of time was the most frequently cited barrier to assessing caregivers' needs (81.1%). The most commonly endorsed facilitators were access to better referral options (67.0%) and easier referral mechanisms (65.1%). Practice patterns, barriers, and facilitators to caregiver assessment did not differ by physician type. Primary care physicians use informal, unstructured discussions rather than standardized instruments to assess caregivers' needs and risks. There is heterogeneity in the topics discussed and types of referrals made. Findings indicate the lack of translation of caregiver assessment tools from research to practice.

The Experiences of Multiple Sclerosis Patients' Family Caregivers at the First Hospitalization of Their Patients: A Qualitative Study.

Background and AimBeing diagnosed with multiple sclerosis is usually accompanied by emotional trauma for patients and their families. The chronic, progressive, and unpredictable nature of the disease spells the patients’ long-term need for care from their families. As soon as a diagnosis is made, family caregivers are faced with many challenges. The present study aims to identify family caregivers’ experiences at the first hospitalization of their patients.Materials and MethodsThe present study is a work of qualitative research and uses the conventional content analysis approach. It lasted from July 2019 to March 2020. The subjects were selected via purposeful sampling. To collect data, the researchers conducted in-depth, semi-structured interviews with 18 family caregivers of patients with multiple sclerosis. The collected data were analyzed using MAXQDA 2007.ResultsAnalysis of the data yielded three themes: peaceful environment, need for continuing full support, and religion-based coping strategies.ConclusionThe findings of the present study can be used to develop support programs that address family caregivers’ problems and needs to assist them in accepting and coping with the conditions of their patients, thereby increasing the quality of care provided to patients with multiple sclerosis.

Assessing Unmet Needs of Caregivers after Stroke: Occupational Therapist Practices and Perspectives

Background: Family caregivers of stroke survivors often feel unprepared and overwhelmed post discharge with numerous unmet needs. Occupational therapists can play an integral role in addressing family caregivers’ needs. Limited research exists on assessment practices of occupational therapists in identifying caregivers’ needs poststroke. This study explores the practices and perspectives of occupational therapists in assessing unmet caregivers’ needs.

Developing a Research Agenda for Adult Palliative Care: A Modified Delphi Study.

Background: Little is known about research priorities in adult palliative care. Identifying research priorities for adult palliative care will help in increasing research quality and translation. Objective: The aim was to identify the views of health professionals' research priorities in adult palliative care that lead to development of a palliative care research agenda in Australia. Design: A modified three-round Delphi survey. Setting/Subjects: Palliative care researchers and clinicians in Australia were invited to participate. Results: A total of 25 panelists completed round 1, 14 completed round 2, and 13 completed round 3. Round 1 resulted in 90 research priorities in 13 categories. Round 2 showed consensus agreement on 19/90 research priorities. Round 3 resulted in the top 10 research priorities of the 19 achieving consensus in round 2. Panelists agreed that research is needed on the transition to palliative care; improving communication about prognosis; increasing access to palliative care for indigenous communities, people who wish to remain at home, and people in aged care; addressing family caregivers' needs; promoting patients' and families' decision making; improving cross-cultural aspects of palliative care; determining the effects of assisted dying legislation; and improving bereavement care in rural, remote, and Aboriginal populations. Conclusions: The expert panelists identified the top 10 research priorities for adult palliative care. These identified research priorities are the most urgent topics requiring attention to increase the quality of life of patients requiring palliative care and their family members.

Hospital postdischarge intervention trialled with family caregivers of older people in Western Australia: potential translation into practice

There is lack of a suitable assessment tool that can be used routinely and systematically by hospital staff to address family caregivers’ (FCs’) support needs. This paper describes a novel...

Creating a conceptual model for family caregivers of older adults intervention research: A narrative review of learned resourcefulness, resourcefulness, and the transtheoretical model

Providing and maintaining optimal care is challenging for older family caregivers who are caring for disabled older adults. Learned Resourcefulness can facilitate family caregivers' self-help strategies, and Resourcefulness can facilitate help-seeking from others. However, little is known about how older family caregivers can effectively maintain and adapt self-help and help-seeking strategies over time, especially as the dynamic nature of caregiving for disabled older adults demands change. To this end, the Transtheoretical model (TTM) provides useful constructs that address family caregivers' readiness to change their self-help and help-seeking behaviors. This paper reviews relevant literature regarding Learned Resourcefulness, Resourcefulness, and the TTM. The proposed conceptual model incorporates constructs from the TTM integrated with Learned Resourcefulness and Resourcefulness strategies to aid in the development and testing of interventions that are designed to promote the quality of life and health of older family caregivers while they are providing care to disabled older adults.

A Web-Based Psychosocial Intervention for Family Caregivers of Older People: Results from a Mixed-Methods Study in Three European Countries.

BackgroundInformal caregiving is the main source of care for older people in Europe. An enormous amount of responsibility and care activity is on the shoulders of family caregivers, who might experience problems in their psychological well-being and in reconciling caregiving and their personal sphere. In order to alleviate such burden, there is increasing interest and growing research in Europe on Web-based support addressing family caregivers and their needs. However, the level of development and penetration of innovative Web-based services for caregivers is still quite low and the access to traditional face-to-face services can be problematic for logistic, availability, and quality reasons.ObjectiveAs part of the European project INNOVAGE, a pilot study was conducted for developing and testing a Web-based psychosocial intervention aimed at empowering family caregivers of older people in Italy, Sweden, and Germany. The program offered information resources and interactive services to enable both professional and peer support.MethodsA mixed-methods, sequential explanatory design was adopted. Caregivers’ psychological well-being, perceived negative and positive aspects of caregiving, and social support received were assessed before and after the 3-month intervention. Poststudy, a subsample of users participated in focus groups to assist in the interpretation of the quantitative results.ResultsA total of 94 out of 118 family caregivers (79.7%) from the three countries used the Web platform at least once. The information resources were used to different extents in each country, with Italian users having the lowest median number of visits (5, interquartile range [IQR] 2-8), whereas German users had the highest number (17, IQR 7-66) (P<.001). The interactive services most frequently accessed (more than 12 times) in all countries were the social network (29/73, 40%) and private messages (27/73, 37%). The pretest-posttest analysis revealed some changes, particularly the slight worsening of perceived positive values of caregiving (Carers of Older People in Europe [COPE] positive value subscale: P=.02) and social support received (COPE quality-of-support subscale: P=.02; Multidimensional Scale of Perceived Social Support subscale: P=.04), in all cases with small effect size (r range -.15 to -.18). Focus groups were conducted with 20 family caregivers and the content analysis of discussions identified five main themes: online social support, role awareness, caregiving activities, psychological well-being, and technical concerns. The analysis suggested the intervention was useful and appropriate, also stimulating a better self-efficacy and reappraisal of the caregivers’ role.ConclusionsThe intervention seemed to contribute to the improvement of family caregivers’ awareness, efficacy, and empowerment, which in turn may lead to a better self-recognition of their own needs and improved efforts for developing and accessing coping resources. A major implication of the study was the finalization and implementation of the InformCare Web platform in 27 European countries, now publicly accessible (www.eurocarers.org/informcare).

Psychological Correlates of Burden Among Jordanian Caregivers of Patients With Serious Mental Illness.

To examine prediction power of personality traits, expressed emotion, and coping strategies on caregivers' burden. Cross-sectional descriptive correlational design was used to collect data from 196 caregivers using the Self-Administered Questionnaire from Jordanian caregivers of patients with serious mental illness. Jordanian caregivers had a moderate-to-severe burden level (M = 47.1, SD = 11.5). Burden had a significant negative relationship with coping (r = -.15, p = .04) and significant positive relationship with personality dysfunction (r = .16, p = .021). Emotional expression, coping, and personality were found to be significant predictors of burden (F = 5.16, p = .002). Mental health professionals need to address family caregivers in their plans of care.

Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool

Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers. The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6-8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire. A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as "knowing what to expect in the future," "knowing who to contact if concerned," and "equipment to help care." The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family. The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease.

Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial

Introduction: The Carer Support Needs Assessment Tool encompasses the physical, psychological, social, practical, financial, and spiritual support needs that government policies in many countries emphasize should be assessed and addressed for family caregivers during end-of-life care. Aim: To describe the experience of family caregivers of terminally ill people of the Carer Support Needs Assessment Tool intervention in home-based palliative care. Methods: This study was conducted during 2012–2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. All 233 family caregivers receiving the Carer Support Needs Assessment Tool intervention provided feedback on their experiences via brief end-of-trial semi-structured telephone interviews. Data were subjected to a thematic analysis. Results: The overwhelming majority reported finding the Carer Support Needs Assessment Tool assessment process straightforward and easy. Four key themes were identified: (1) the practicality and usefulness of the systematic assessment; (2) emotional responses to caregiver reflection; (3) validation, reassurance, and empowerment; and (4) accessing support and how this was experienced. Conclusion: Family caregivers appreciated the value of the Carer Support Needs Assessment Tool intervention in engaging them in conversations about their needs, priorities, and solutions. The Carer Support Needs Assessment Tool presented a simple, yet potentially effective intervention to help palliative care providers systematically assess and address family caregivers’ needs. The Carer Support Needs Assessment Tool provided a formal structure to facilitate discussions with family caregivers to enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services for family caregivers, ensuring that new or improved services are designed to meet the explicit needs of family caregivers.

Development of a Home-Based Family Caregiver Cancer Education Program

This article describes a home-based educational program developed specifically for family caregivers of cancer patients who receive hospice and home care. The overall aim of this educational program is to specifically address family caregivers' needs for acquisition of necessary knowledge and skills to meet the physical and psychosocial demands associated with caring for a patient with advanced cancer. Originally, components of this program were offered in a small group discussion format within hospital and community settings. The educational program was transformed to accommodate the unique needs and constraints of homebound family caregivers who have very limited time and/or opportunities for support and education outside of the home. The program is comprised of educational modules that provide hospice and home care professionals with written and audiovisual materials designed to facilitate brief, structured, educational encounters with family caregivers in the home setting. Two hundred thirty-seven educational module kits were distributed to professionals affiliated with twenty-four home care and hospice agencies in the Greater Philadelphia area. Results of a telephone survey designed to elicit evaluation data from professional staff members who had used the educational modules are presented. Limitations, plans for future program evaluation, cost implications, and implementation recommendations related to this educational program are described.