Current Caregivers Research Articles

Developing the Asian Pacific Islander Caregiver Train-the-Trainer Program in the United States

ABSTRACT This article describes our project to design the Asian Pacific Islander Caregiver Train-the-Trainer (APICTT) Program in the United States. The project relied on a sequential approach to gathering and building upon (1) evidence mapping to identify existing caregiver training programs in the United States available in API languages; (2) assessment of API caregiver training needs among community-based organizations using survey and focus group; and (3) Chinese and Korean caregiver focus groups. The findings highlight language, culture, and access gaps in current caregiver training programs and reinforce the importance of developing a culturally and linguistically appropriate caregiver training program for API caregivers in the United States. The findings also shed light into using the train-the-trainer model to enhance the service delivery capacity of community-based organizations.

Psychopathology and impairment of quality of life in offspring of psychiatric inpatients in southern Brazil: a preliminary study

ObjectiveTo evaluate the quality of life and risk of psychopathology in the infant and adolescent offspring of psychiatric inpatients from a general hospital unit.MethodsOffspring (4–17 years old) of psychiatric inpatients were interviewed face-to-face and assessed with the Strengths and Difficulties Questionnaire (SDQ). Interviews with caregivers and the hospitalized parents were also performed. The quality of life of the offspring, psychopathology of their hospitalized parents, and their current caregivers were investigated in order to evaluate any associations between these aspects and psychopathology in the offspring.ResultsThirty-four children of 25 patients were evaluated, 38.2% of which presented high risk for some type of psychopathology including hyperactivity or attention deficit disorder (38.2%), behavioral disorders (20.6%), and emotional disorders (17.6%). While only the minority of these children (17.6%) were already receiving mental health treatment, another 41.2% of them exhibited some degree of symptoms and were only referred for specialized assessment. Additionally, 61.8% of the children were reported to be suffering from some impairment in their quality of life.ConclusionThis preliminary study found a high rate of psychopathology in children of psychiatric inpatients. These results corroborate previous evidence that children and adolescents with parents with severe psychopathology are at high risk for developing mental disorders. Public policies and standard protocols of action directed to this population are urgently needed, especially for offspring of parents that are hospitalized in psychiatric in-patient units of general hospitals.

When Nowhere Is Safe: Interpersonal Trauma and Attachment Adversity as Antecedents of Posttraumatic Stress Disorder and Developmental Trauma Disorder.

Developmental trauma disorder (DTD) has been proposed as clinical framework for the sequelae of complex trauma exposure in children. In this study, we investigated whether DTD is associated with different traumatic antecedents than posttraumatic stress disorder (PTSD). In a multisite sample of 236 children referred from pediatric or mental health treatment, DTD was assessed using the DTD Structured Interview. Trauma history was assessed using the Traumatic Events Screening Instrument (TESI). On an unadjusted basis, both DTD, odds ratios (ORs) = 2.0–3.8, 95% CI [1.17, 7.19]; and PTSD, ORs = 1.8–3.0, 95% CI [1.04, 6.27], were associated with past physical assault and/or abuse, family violence, emotional abuse, neglect, and impaired caregivers; and DTD was associated community violence, OR = 2.7, 95% CI [1.35, 5.43]. On a multivariate basis after controlling for the effects of PTSD, DTD was associated with family and community violence and impaired caregivers, ORs = 2.0–2.5, 95% CI [1.09, 5.97], whereas PTSD was only associated with physical assault and/or abuse after controlling for the effects of DTD, OR = 2.4, 95% CI [1.07, 4.99]. Exposure to both interpersonal trauma and attachment adversity was associated with the highest DTD symptom count, controlling for the PTSD symptom count. Although childhood PTSD and DTD share several traumatic antecedents, DTD may be uniquely associated with pervasive exposure to violent environments and impaired caregiving. Therefore, DTD warrants further investigation as a framework for the assessment and treatment of children with histories of interpersonal victimization and attachment adversity.

Qualitative exploration of Japanese rural citizens' consideration of terminal home care through an educational forum.

BackgroundThe need for home care services for older adults is gradually increasing in many countries. In the past, Japanese older adults typically died at home, but the current trend is toward hospital death. Few studies in Japan have explored peoples’ viewpoint on home care, however, especially in rural areas. Therefore, we clarified Japanese rural residents’ views of terminal home care.MethodsWe conducted a qualitative study of 152 participants who are current or potential caregivers of older adults and who live in the city of Unnan, Shimane Prefecture, which has a large elderly population. An educational forum consisting of presentations and a workshop were used to provide information on terminal home care to rural citizens. A thematic analysis of the workshop's content regarding participants’ perceived difficulties related to terminal home care was conducted.ResultsParticipants described four themes regarding problems of terminal home care: medical aspects, care burden, health care system, and patient problems. Besides the need for more knowledge of the medical and health system, participants were anxious about the burden of care on their lives and the perceptions of others in their community.ConclusionThis study is the first report on Japanese rural citizens’ views of terminal home care. The findings suggest that the limited use of home care in Japanese rural areas might relate to a lack of understanding of terminal home care and health care systems, a substantial care burden for caregivers, and conflicts between patients and families.

Inadequate Communication Exacerbates the Support Needs of Current and Bereaved Caregivers in Advanced Heart Failure and Impedes Shared Decision-making.

Clinicians face considerable challenges in identifying patients with advanced heart failure who experience significant symptom burden at the end of life. Often, these patients are cared for in the community by a loved one who has limited access to support from specialist services, including palliative care. The aims of this study were to explore caregivers' experience when caring for a loved one with advanced heart failure at the end of life and to identify any unmet psychosocial needs. This article reports findings of a qualitative study, using semistructured, one-to-one interviews with current and bereaved caregivers, who participated in a larger mixed-methods study. Interviews were conducted by a trained researcher, digitally recorded, transcribed verbatim, and imported to NVivo 11 for data management and coding. Data were analyzed using thematic analysis and an inductive approach. The 30 interviews included 20 current caregivers and 10 bereaved caregivers. The central feature of the caregivers' experience was identified as being "a physical and emotional rollercoaster." There were 3 main themes identified: poor communication, living with uncertainty, and lack of service provision. These themes were supported by 6 subthemes: inadequate understanding of palliative care, a 24/7 physical burden, emotional burden, inability to plan, no care continuity, and dying lonely and unsupported. Caregivers in advanced heart failure need clearer communication regarding diagnosis and prognosis of their loved one's condition to help with the uncertainty of their situation. Improved identification of palliative care needs and more coordinated service provision are urgently required to address their physical and emotional challenges from diagnosis through bereavement.

Relationship between Mastery and Caregiving Competence in Protecting against Burden, Anxiety and Depression among Caregivers of Frail Older Adults

ObjectiveStudies suggest the protective effect of mastery and caregiving competence against psychological stressors of caregiving in the context of dementia, although the interplay between the two with caregiver outcomes is not well understood. This study examines the independent and moderating impact of mastery and caregiving competence on burden, anxiety and depression among caregivers of older adults with frailty-related care needs.Design, Setting and ParticipantsThis is a cross-sectional study of 274 older adults-family caregiver dyads from a hospital in Singapore. Mean ages of the older adults and their caregivers were 85 and 59 years respectively.MeasurementsWe performed hierarchical linear regression models to examine the independent influence of mastery and caregiving competence on caregiver burden, anxiety and depression. We also examined the interaction effect between mastery and caregiving competence for each outcome.ResultsMastery and caregiving competence were independently negatively associated with caregiver burden, anxiety and depression. Mastery explained more variance than caregiving competence and had a stronger correlation with all outcomes. There was a statistically significant interaction between mastery and caregiving competence for depression (interaction term beta=.14, p<0.01), but not burden and anxiety. High levels of mastery are associated with less depression. particularly among caregivers with below-average levels of caregiving competence. Likewise, high levels of caregiving competence are associated with less depression. particularly among caregivers with below-average levels of mastery.ConclusionOur findings suggest potential benefits adressing targeted interventions for mastery and caregiving competence of caregivers to older adults as they independently influence caregiver outcomes and moderate each other’s effect on depression. Mastery-based interventions should be incorporated into current caregiver training which traditionally has focused on caregiver competence alone.

Towards an Understanding of Informal Care Networks of Persons with Dementia: Perceptions of Primary Caregivers

Introduction Although an understanding of the patient work system has been increasing in the field of Ergonomics and Human Factors, the role of informal caregivers (unpaid, nonprofessional caregivers) within the patient work system remains largely unexplored (Holden, Schubert, &amp; Mickelson, 2015; Holden, Valdez, Schubert, Thompson, &amp; Hundt, 2017). Informal caregivers include the family members and friends of persons with dementia (PwD), or anyone else who is unpaid, and a non-professional caregiver for a PWD(Reinhard, Given, Petlick, &amp; Bemis, 2008). Nevertheless, informal caregivers are often unsupported and lack guidance with caregiving activities(Alrashed, 2017; Bossen, Christensen, Grönvall, &amp; Vestergaard, 2013). This study represents a first step to define the work of informal caregivers, identify variations in caregiver involvement across multiple caregivers, and explore the perceptions of the primary caregiver (PC) regarding the care network. Understanding the specific roles and work associated with providing care can help us to support and prepare future and current informal caregivers on how to overcome barriers in the work system and increase quality of care for the PwD. Methods Semi-structured interviews were used to encourage 20 self- identified primary caregivers to discuss their daily experiences in providing care to a PwD. Interview questions related to: 1) the daily activities of informal caregivers; 2) the strategies, tools, and resources used and developed by informal caregivers to manage caregiving responsibilities; 3) unmet needs in providing care; and 4) the context in which informal caregiving occurred. We used a thematic analysis with the goal of understanding informal caregiving roles in the PwD work system. Guided by the research questions, structural coding of passages in the transcripts was performed by two members of the research team. The team also mapped the caregiver networks to understand the differences in each role network level. Results The results revealed that the work of informal caregivers of PwD consists of a wide range of tasks that can be physically challenging as well as mentally and emotionally burdensome. Our analysis also revealed distinct variations in care networks and primary caregiver perceptions of other themes: 1) informal caregivers operate at three role levels of care within the care network; 2) PwD care networks vary greatly in size and relationships, and 3) PCs act as gatekeepers to the care network. Caregivers were mapped across three levels of the PwD's care network based on frequency of interactions with the PC and PwD, communication patterns, and contributions to the care activities. Care networks varied between 2 and 11 caregivers who contributed to the care activities in some capacity. The relationships between caregivers and PwD varied greatly, including spouses, children, siblings, neighbors, and volunteers. Further, we found that there is usually one PC for every PwD. The PC acts as a gatekeeper to the care network by regulating interactions between other caregivers and the PwD. The PC also had different expectations for each caregiver based on their relationship to the PwD. Discussion This research presents preliminary findings on the roles of informal caregivers of persons with dementia. These results warrant further investigation into role delineation, primary, secondary, and tertiary caregiver expectations, and the full conceptualization of caregiver work. A formal network analysis that maps caregiver activities to specific roles may be beneficial to understand all the contributions to the care network. These findings are valuable to inform patient work system design in informal care settings. Currently, there is a lack of guidance on how informal caregivers should coordinate care for patients with chronic illness in their homes, and a lack of support for these informal care activities. Defining caregiver work and understanding caregiver perceptions of work can pave a path towards designing better patient work systems to connect the network more efficiently, while improving care quality in informal settings.

Early caregiving predicts attachment representations in adolescence: findings from two longitudinal studies.

A growing research base demonstrates that adolescents' construction of secure attachment relationships may underlie successful social and personal relationships and healthy behavioral adjustment. Little is known about the early caregiving origins of adolescent attachment security; this study provides some of the first data on this topic. The relative contribution of early and current caregiving quality to attachment security in adolescence was assessed in two longitudinal studies of a clinic-referred and an at-risk community sample using identical measures (n=209). Quality of early parent-child relationships at age 3-7years of age and parent-adolescent relationship quality at approximately 12years were assessed using observational methods; psychosocial risk was derived from extensive interview and questionnaire assessments; adolescent attachment quality was assessed using a standard attachment interview. Analyses indicated moderate stability in observed parent-child interaction quality from early childhood to adolescence. Observational ratings of both early childhood and current caregiving quality were significantly associated with adolescent attachment security; however, early caregiver sensitivity was more strongly associated with adolescent attachment security and predicted later attachment security independently from current caregiving quality. Follow-up analyses indicated that this longitudinal prediction was significantly weaker in the clinic than in the at-risk community sample. Parental sensitive responding in childhood has enduring effects on attachment representation in adolescence, independent of current parenting relationship quality. These findings provide important new evidence supporting early parenting interventions for promoting youth well-being and adjustment.

A perfect storm: Challenges encountered by family caregivers of persons with Alzheimer’s disease during natural disasters

ABSTRACTSince Hurricane Katrina there has been a movement across the U.S. to examine best practice for disaster response within the aging population. However, little is known about the experience of natural disasters from the perspective of family caregivers of persons with Alzheimer’s disease and related dementia (ADRD). In this exploratory, qualitative study, family caregivers (n=27) were interviewed about their experience with the historic 2015 South Carolina flood. By using thematic analysis, themes were identified to better understand what unique challenges caregivers of person with ADRD experienced. While many caregivers stated they had experienced a natural disaster previously, none had ever done so in their current caregiving role. The caregiving role affected their ability to prepare for the storm and influenced their decision-making regarding evacuation and utilization of recovery resources. Thus, caregivers were confronted by a “perfect storm” of circumstances and uncertainty. Family caregivers need to have actionable emergency plans for disasters that are specific to their role as caregivers of persons with ADRD. Study implications also suggest the role social work professionals can have in educating, advocating, evaluating, and coordinating support to assist caregivers of persons with ADRD as a potentially vulnerable and at-risk population during all phases of disaster.

Caregiver and expecting caregiver support for early peanut introduction guidelines

BackgroundRecent guidelines recommend early peanut introduction (EPI) beginning around 4 to 6 months of age in infants with severe eczema and/or egg allergy and around 6 months for all other infants. Caregiver preferences for such practices are unknown. ObjectiveTo determine levels of support for early allergenic solid food recommendations among new and expecting caregivers of infants at risk for peanut allergy. MethodsWe explored preferences for EPI and in-office allergy risk assessment (IRA) through a nationally representative survey of expecting (n = 1,000) and new caregivers of infants younger than 1 year (n = 1,000). ResultsAmong a primarily female (99.7%), married (80.3%), and white (74.4%) sample, 29% had no or vague awareness of the new guidelines, 61% had no or minimal concern for their child developing food allergy, but 54% felt timing of food introduction has moderate to strong importance for developing food allergy. Only 31% expressed willingness for EPI before or around 6 months of age, with 40% reporting willingness to introduce peanut after 11 months of age, similar to tree nuts and seafood. However, 60% reported willingness to introduce egg before 8 months of age. A total of 51% and 56.8% were unwilling to allow IRA methods, such as skin testing and oral challenge, before 11 months of age, respectively. Odds of willingness to delay peanut introduction (odds ratio, 0.79; 95% confidence interval, 0.65–0.96) and undergo challenge (odds ratio, 0.67; 95% confidence interval, 0.54–0.82) after 6 months of age were lower among expecting caregivers. ConclusionAmong new and expecting caregivers, there is poor current willingness and questionable support for early allergenic solid food recommendations, including IRA before introduction. Willingness was better among expecting vs current caregivers. These trends underscore a need for broader formal implementation planning to facilitate early allergen introduction and maximize its preventive benefits.

Potential impacts of poor communication on early diagnosis of HIV-associated neurocognitive disorder.

To ascertain whether community-based healthcare providers were collecting appropriate information to identify patients at risk of HIV-associated neurocognitive disorder and whether related documentation was complete. HIV-associated neurocognitive disorder is a treatable neurological condition that can affect more than 20% of those infected with the HIV. Signs and symptoms of cognitive impairment may be subtle; therefore, documentation of medical and social information could be beneficial in identifying those at risk. Cross-sectional descriptive study. An audit of patient records was completed by two community-based interdisciplinary teams with particular attention to the documentation of clinical and social indicators for those at risk of HIV-associated neurocognitive disorder. Data were collected over weeks during 2015. Data were retrieved from both electronic medical record systems and hard copy patient records. Documentation was incomplete in every patient record (N=262), including the absence of important clinical data relating to nadir CD4+T-cell count (91%), HIV viral load (36%), current caregiver (19%), and living circumstances (14%). Up to 40% of recorded medications and results were unconfirmed by the person's medical practitioner. Poor documentation can lead to incomplete information, which can delay early intervention for those at risk of HIV-associated neurocognitive disorder. Collection and recording of patient data needs to be consistent, as complete documentation is essential for integrating care, provision of clinical support and, importantly, for identifying those at risk of developing HIV-associated neurocognitive disorder.

‘The importance of planning for the future’: Burden and unmet needs of caregivers’ in advanced heart failure: A mixed methods study

Background: While studies have evaluated caregiver outcomes in heart failure, the burden and support needs when caring for someone with advanced heart failure at the end of life have yet to be outlined. Aim: To identify psychosocial factors associated with caregiver burden and evaluate the support needs of caregivers in advanced heart failure. Design: A sequential mixed methods study comprising two phases: (1) postal survey with advanced heart failure patients and their caregivers and (2) interviews with current and bereaved caregivers. Correlation, chi-square, t test, regression and thematic analysis were undertaken on the data. Participants: Advanced heart failure patients (n = 112) and their caregivers (n = 84) were recruited from secondary care settings across the United Kingdom and Ireland. For phase 2 interviews, current caregivers (n = 20) were purposively recruited from phase 1, and bereaved caregivers (n = 10) were purposively recruited via voluntary organisation, social media and email. Results: More than half the caregivers (53%) had levels of distress associated with depression (Zarit Burden score >24). Caregiver depression score, preparedness for caregiving and patients’ depression score predicted caregiver burden. Qualitative analysis identified an overarching theme of lack of future care planning and four subthemes: (1) seeking emotional support from someone who understands, (2) want information on prognostication, (3) lack of knowledge on how to and where to get support and (4) require knowledge on what to expect at the end of life. Conclusion: Caregivers have unmet needs and feel unprepared for the future. Implementation of future care planning by clinical teams should address patient and caregiver support needs and in turn alleviate caregiver burden.

Mobilizing Former Family Caregivers

Mobilizing Former Family Caregivers

Perceptions of a psychoeducation program for caregivers of persons with dementia at end of life: a qualitative study

ABSTRACTObjectives: Caregivers (CG) of persons with dementia have described positive and challenging experiences related to caring for a person with a neurological disease. This study explored perceived benefits and challenges of a unique psychoeducation program provided at end of life (EOL) jointly attended by current and bereaved CGs of persons with dementia, residing in a hospital Specialized Care Unit.Method: Semi-structured interviews were held with sixteen participants and analyzed with content analysis.Results: Program benefits were perceived by CGs such as: (i) enhanced emotional well-being, (ii) increased feelings of preparedness for EOL, and (iii) personal growth into role models. Within the organization the program was perceived as promoting relationship-centered care and increasing resources. Challenges such as diverse CG preferences, day-time scheduling and limited involvement of unit staff were perceived as barriers.Conclusions: This program fills a gap in care for CGs at the critical stage of EOL with continuity into bereavement. Implications for practice include: increasing engagement of unit staff for involvement and tailoring of the program, and translation of the program into alternative settings like long-term care. Policies outlining the support needs and resources for CGs through EOL within and outside the hospital are necessary to ensure access and continuity of care.

Parent–Child Contact for Youth in Foster Care: Research to Inform Practice

ObjectiveThe purpose of this study was to document how often youth in foster care have contact with their legal parents, test factors associated with the amount of contact, and determine if contact was associated with relationships with caregivers and youth mental health symptoms.BackgroundBecause parental reunification is the case plan goal for most youth in foster care, it is important to maintain contact with parents. Federal policy emphasizes the importance of parent–child contact for youth in foster care; however, little is known about how often visitation actually occurs.MethodThis study involved a nationally representative study of youth aged 6 to 17 years in the child welfare system (N = 452). Youth reported their amount of contact with parents, and levels of emotional security and involvement with current caregivers. Caregivers completed the Child Behavior Checklist. Multinomial logistic regression and analyses of covariance were conducted to determine linkages associated with parental contact, relationships with caregivers, and youth mental health.ResultsMost youth had at least weekly contact with mothers; however, more than half reported never having contact with fathers. Youths' age, race, type of maltreatment, and placement were associated with how often contact occurred. Findings also revealed statistically lower internalizing, externalizing, and total behavior problems of youth who had daily contact with mothers compared with youth with no contact.ConclusionWhen parent–child contact is safely possible, more frequent contact with mothers is associated with beneficial youth outcomes.ImplicationsApplying a translational family science approach, implications for engaging mothers and fathers in visitation are discussed.

Current Caregiver Perspectives and Effects of Demographics on Family-Centered Rounds.

The 2010 Pediatric Research in Inpatient Settings survey stated that 44% of pediatric hospitals practiced family-centered rounds (FCRs). We aimed to study caregivers' opinions of FCRs and determine if there are demographic associations with these opinions. A cross-sectional survey of caregivers who attended FCRs was conducted at a tertiary-care general pediatrics unit. The survey contained Likert-type scale and qualitative questions. Fisher's exact test was used to test demographic associations. Only English proficient caregivers were included. Almost all (99%) caregivers liked being present during rounds, 19% felt that there were too many people present during rounds and 15% felt that medical jargon was used. Significant demographic associations were found including older caregivers being less comfortable asking questions as well as more neutral responses from African Americans and those with less education. Opportunity exists to customize FCRs and tailor rounding according to demographics, opening the door for future quality improvement projects.

The experience of informal caregivers of patients with motor neurone disease: A thematic synthesis.

A thematic synthesis of qualitative literature was conducted. AMED, Medline, SPORTDiscus, CINAHL, and PubMed were electronically searched from inception until September of 2015. Studies were eligible if they included qualitative literature reporting on firsthand experience of informal caregivers of patients with MND, were published in English, and contained verbatim quotations. Critical appraisal was undertaken using a 13-item consolidated criteria for reporting qualitative studies (COREQ) checklist. A total of 10 studies met the inclusion criteria, with 148 (50 male) current or previous informal caregivers of pwMND identified. Critical appraisal demonstrated that study design and reflexivity were underreported. The synthesis derived three themes: (1) loss of control, (2) inability to choose, and (3) isolation. The synthesis highlighted the factors that contribute to both positive and negative caregiving experiences. Through these experiences, such suggestions for service provision as improving communication with healthcare professionals and having a single point of contact emerged. However, the outcome of such suggestions on the experience of caregivers is beyond the scope of our synthesis, so that further research is required.

Effects of caregiving status and changes in depressive symptoms on development of physical morbidity among long-term cancer caregivers.

Cancer caregiving burden is known to vary across the survivorship trajectory and has been linked with caregivers' subsequent health impairment. Little is known, however, regarding how risk factors during long-term survivorship relate to vulnerability to caregivers' health during that period. This study examined effects of caregiving status and depressive symptoms on development of physical morbidity by 5 years postdiagnosis. Family caregivers (N = 491; Mage = 55.78) completed surveys at 2 (Time 1 [T1]) and 5 years (T2) after their care recipients' cancer diagnosis. Demographic and caregiving context variables known to affect caregivers' health were assessed at T1. Self-reported depressive symptoms and a list of physical morbid conditions were assessed at T1 and T2. Caregiving status (former, current, or bereaved) was assessed at T2. Hierarchical negative binomial regression revealed that current caregivers at T2 (p = .02), but not those bereaved by T2 (p = .32), developed more physical morbid conditions between T1 and T2 compared with former caregivers, controlling for other variables. Independently, caregivers reporting either newly emerging or chronically elevated depressive symptoms at T2 (ps < .03), but not those whose symptoms remitted at T2 (p = .61), showed greater development of physical morbidity than did those reporting minimal depressive symptoms at both T1 and T2. Results highlight the roles of long-term caregiving demands and depressive symptoms in cancer caregivers' premature physical health decline. Clinical attention through the long-term survivorship trajectory should be emphasized for caregivers of patients with recurrent or prolonged illness and to address caregivers' elevated depressive symptoms. (PsycINFO Database Record

The Importance of the Caregiver and Adolescent Relationship for Mental Health Outcomes Among Youth in Foster Care

Youth in foster care have often been exposed to in-home violence and violence exposure is associated with higher mental health concerns. This study used multiple regression mediation analyses with bootstrapping to identify specific current foster caregiver-adolescent relationship factors and their mediating qualities between in-home violence exposure and adolescent internalizing, externalizing, and trauma symptoms. Using a national dataset of adolescents in foster care (n = 175), the results of this study suggested that an adolescent’s perception of feeling emotionally secure in their relationship with their caregiver mediated the relationships between exposure to violence and youth internalizing, externalizing, and trauma symptoms. Additionally, current foster caregiver involvement and structure mediated the associations between exposure to violence and adolescent internalizing and externalizing outcomes, but not trauma symptoms. Further discussion of the results is included. Findings have important implications for mental health interventions aimed towards youth in foster care.

Who is responsible for providing care? Investigating the role of care tasks and past experiences in a cross-sectional survey in the Netherlands

BackgroundMany countries face substitution from formal to informal care. It is essential that a sufficient number of caregivers, such as family, friends or neighbors, are willing and able to lend care to address the needs of ill or elderly persons. We investigated whether the general public, who might become caregivers in the future, and current informal caregivers align with the shift to more informal caregiving.MethodsWe studied the views on the responsibility for care of the general public versus the government, and whether these views differed among groups with diverse past experiences with care in terms of own health problems or previous caregiving activities. Data (n = 1097) was collected among the Dutch Health Care Consumer Panel with a survey in October 2015. Multivariate analyses of the views on responsibility for care in general and for different types of care were performed using (i) health, (ii) informal care, and (iii) general background characteristics, among a sample of the general public and among a subgroup of current caregivers.ResultsThe majority (67%) of the respondents would be willing to provide informal care in the future, when necessary. Respondents were more willing to provide support tasks than personal or nursing care activities. Among current caregivers, views on responsibility for care were associated with their past experience. Experiencing less burden of caregiving was associated with perceiving the general public as more responsible for personal or nursing care.ConclusionsThe results of this study show that substitution from formal to informal care is more in line with public views when support activities are concerned than personal or nursing care. In addition, burdened caregivers also consider the government more responsible for personal or nursing care. When handing over care tasks to the public domain a critical view is needed on which care tasks are most appropriate for this.