Caregiver Motivation Research Articles

Walking the “Emotional Tightrope” From Pregnancy to Parenthood

Advances in medical technology account for increasingly more couples receiving fetal diagnoses of complex congenital heart disease. Theory on internal working models of caregiving during parenting transitions informed this prospective, exploratory study. Data included conjoint interviews and measures of anxiety, trauma, and depression collected from six couples after diagnosis and after birth. Severity of illness was described using infant health records. Directed content analysis furthered understanding of the caregiving motivation to manage health care that included three categories of parental efforts: (a) to determine expectations of health care providers, (b) to reconcile illness- and non-illness-related care, and (c) to express agency as a parent. Synthesis of qualitative findings transformed into categorical ratings with parents' levels of distress resulted in two profiles characterizing types of internal working models. Findings extend theory on internal working models of caregiving and offer direction for future research regarding parental management of health care for their chronically ill offspring. Implications for practice with families are offered.

Improving care quality and preventing maltreatment in institutional care - a feasibility study with caregivers.

Institutionalized children in low-income countries often face maltreatment and inadequate caregiving. In addition to prior traumatization and other childhood adversities in the family of origin, abuse and neglect in institutional care are linked to various mental health problems. By providing a manualized training workshop for caregivers, we aimed at improving care quality and preventing maltreatment in institutional care. In Study 1, 29 participating caregivers rated feasibility and efficacy of the training immediately before, directly after, and 3 months following the training workshop. The results showed high demand, good feasibility, high motivation, and acceptance of caregivers. They reported improvements in caregiver–child relationships, as well as in the children’s behavior. Study 2 assessed exposure to maltreatment and the mental health of 28 orphans living in one institution in which all caregivers had been trained. The children were interviewed 20 months before, 1 month before, and 3 months after the training. Children reported a decrease in physical maltreatment and assessments showed a decrease in mental health problems. Our approach seems feasible under challenging circumstances and provides first hints for its efficacy. These promising findings call for further studies testing the efficacy and sustainability of this maltreatment prevention approach.

Activité physique pendant et après le cancer : comment prescrire et dans quels objectifs ?

Today, it is well known that the practice of a physical activity counteracts fatigue induced by cancer and its treatment. With a lower level of evidence, physical activity also improves a broad range of quality of life domains during and after cancer treatment. The improvement in body composition and physiopathologic biomarkers associated with the obtaining or maintenance of a good level of physical activity could possibly be associated with a better tolerance and efficacy of cancer treatments. An increase in cancer survival is expected thanks to the reduction of comorbidities associated to sedentary lifestyle or insufficiency of physical activity as well as to a possible effect on tumor growth. Doing nothing to prevent deconditioning and loss of muscle mass of physically active people diagnosed with a cancer is unacceptable. It is also unacceptable to do nothing to change the sedentary behavior and lack of physical activity of people with insufficient physical activity; these behaviors are recognized as a factor of increased risk, mortality and recurrence of cancer. The safety and clinical benefits of the implementation of adapted physical activity programs are demonstrated. The benefit in terms of increase of physical activity reported in these programs must be maintained in the long term. The positive behavior modifications for cancer patients are dependent of the improvement of knowledge and motivation of caregivers, but also of the provision of facilities for physical activity conducted under the supervision of competent professional and probably, of implementation of therapeutic education programs, all of them applied as soon as possible after diagnosis.

Caregiving Motivation Predicts Long-Term Spirituality and Quality of Life of the Caregivers.

Studies have shown that caregivers report impaired quality of life (QOL). This study investigated how caregiving motives predict long-term spirituality and QOL among cancer caregivers and the role of gender in these associations. Caregiving motives of family members (n = 369) were measured 2years after their relative's cancer diagnosis (T1), and both spirituality and QOL (mental and physical health) were measured at 5years postdiagnosis (T2). Structural equation modeling was used to test spirituality dimensions as potential mediators of links from caregiving motives to QOL. Among male caregivers, autonomous caregiving motives at T1 related to better mental health at T2, apparently because these motives led caregivers to find greater peace and meaning in life at T2. Findings suggest that caregivers may benefit from interventions that facilitate their ability to be autonomously motivated and find contentment in their caregiving experience, which may improve spiritual adjustment and QOL years later.

The role of relationship attachment in psychological adjustment to cancer in patients and caregivers: a systematic review of the literature.

The objective of this works is to report the results of a systematic review to evaluate the role of attachment in adjustment to cancer for patients and those close to them. A systematic search of electronic databases was undertaken, identifying literature published up to June 2013. PsychINFO, Medline and the Cumulative Index to Nursing & Allied Health Literature were searched using search strings related to cancer, relationships, attachment and commonly assessed self-report psychosocial outcome measures. Extracted papers were assessed for their relevance. Key data were extracted to spreadsheets, and two raters coded the quality of the research. Following inclusion assessment, data were extracted from 15 quantitative studies. Scores from patients or caregivers on attachment questionnaires did not differ greatly from normative data. A more insecure attachment style has poorer outcomes for patients in terms of their psychological adjustment to cancer and their ability to perceive and access social support. A secure attachment style is associated with positive growth and better well-being. A more insecure attachment style in caregivers was associated with depression, higher caregiving stress, less autonomous motivations for caregiving and difficulties with caregiving. An awareness of attachment theory and the ways in which different forms of insecure attachment impact on patients and caregivers and their well-being may substantially improve the ability of those working with cancer patients and their families to better understand and provide for their support needs. The development and evaluation of support interventions tailored to different attachment styles remains a longer-term goal.

Multi-Family Groups for Multi-Stressed Families

Purpose: To examine the influence of caregiver stress on attendance among urban families involved in a multiple family group (MFG) intervention, as well as pre/post changes in childhood behavioral difficulties, caregiver stress, caregiver depressive symptoms, caregiver coping by substance use, and caregiver motivation to change. Methods: Univariate analyses assessed pre/post differences in outcomes between and within stress groups. Post hoc analyses accounted for missing data and the potential influence of regression to the mean. Results: High caregiver stress was associated with lower rates of attendance in MFG over time. Despite attending the fewest sessions, highest stressed caregivers experienced the most pre/post improvement on measures of caregiver stress and childhood behavioral difficulties. Discussion: Involvement in an MFG intervention is associated with high rates of attendance and meaningful improvements in child and caregiver outcomes, with the most distressed families reporting the greatest reduction in both caregiver stress and childhood behavioral difficulties.

Changing Academic Support in the Home for Adolescents With Attention-Deficit/Hyperactivity Disorder: A Family-Based Clinical Protocol for Improving School Performance

Attention-deficit/hyperactivity disorder (ADHD) is highly prevalent among adolescent clinical populations and associated with myriad deficits in school functioning. Yet, behavior therapists have few developmentally appropriate tools for addressing school problems in this group. This article introduces a behavioral protocol designed to fill the gap: Changing Academic Support in the Home for Adolescents With ADHD (CASH-AA). CASH-AA is a family-based intervention that targets home environment, adolescent skills, and family-school partnership characteristics in order to improve school performance. Protocol components are derived from three evidence-based approaches for adolescent behavior problems: family psychoeducation, clinical family interventions to heighten adolescent and caregiver motivation to change, and training interventions for homework planning and organization skills. CASH-AA contains four treatment modules: (1) Psychoeducation: ADHD and Academic Functioning; (2) Motivation and Preparation: Home Academic Environment; (3) Behavior Change: School Attendance and Homework Plan; (4) Collaboration: Therapist-Family-School Partnership. The protocol can be implemented as a stand-alone intervention for ADHD or an adjunct to other behavioral interventions for co-occurring disorders. Two case examples with markedly different treatment profiles are presented to illustrate the utility and flexibility of the protocol.

Cultural Correlates of Burden in Primary Caregivers of Older Relatives: A Cross‐sectional Study

To analyze the effect of cultural factors on the subjective burden of primary home caregivers of older relatives. Cross-sectional study. Primary home caregivers (N = 208) of older relatives were recruited in Spain using systematic random sampling. The data were collected in 2010 through interviews. The measures included sociodemographic characteristics, stressors (the intensity of care provided and the care-recipient's needs; the latter were assessed using the Barthel Index, the Pfeiffer Short Portable Mental Status Questionnaire and the Cummings Neuropsychiatric Inventory), cultural factors (kinship ties, common residence, perceived social support, and cultural motives for caregiving), and caregiver subjective burden (Caregiver Strain Index). The data were analyzed using bivariate procedures and multiple linear regression. After controlling for caregiver age, caregiver gender, stressors, and duration of caregiving, subjective burden was negatively associated with perceived social support and reciprocity, and in the subgroup of adult children, it was positively associated with common residence. Cultural factors explained 29% of the variance in burden. Our findings add to the existing evidence regarding the influence of cultural factors in the perception of burden in caregiving situations. A risk profile could be proposed for subjective burden in primary family caregivers. Individuals who are at risk are characterized as young, offspring who live with the care recipient, care for a care recipient with behavioral problems, are unsatisfied with the social support received, and have a low balanced reciprocity.

The mechanism of family caregiving system maintenance: Focusing on reasons for care given preference and non-preference based on caregiving motives

The mechanism of family caregiving system maintenance: Focusing on reasons for care given preference and non-preference based on caregiving motives

Freedom and Imperative

This article explores mutual caregiving between older spouses aging with physical disabilities. Nine older couples, where both partners had lived long lives with physical disabilities, were interviewed as dyads about mutual caregiving. The couples not only had access to different kinds and degrees of formal support but also provided mutual care to each other in a variety of ways. Interview coding using grounded theory led to two overarching categories from which motivation for mutual caregiving could be understood. These categories were Mutual care as freedom and Mutual care as imperative. The results extend understanding about how older couples with disabilities attached meaning to their mutual caregiving, and why mutual care was sometimes preferable, despite the availability of other sources of help and despite practical difficulties of providing this help. These findings suggest that health care professionals need to be sensitive to the dynamics of the couple relationship and carefully explore the couple's preferences for how formal support can best be provided in ways that honor and sustain the integrity of the couple relationship.

Putting theory to the test: Examining family context, caregiver motivation, and conflict in the Family Check-Up model

This study examined contextual factors (caregiver depression, family resources, ethnicity, and initial levels of youth problem behavior) related to the effectiveness of the Family Check-Up (FCU) and evaluated family processes as a mediator of FCU intervention response and adolescent antisocial behavior. We followed a sample of 180 ethnically diverse youths of families who engaged in the FCU intervention. Family data were collected as part of the FCU assessment, and youth data were collected over 4 years, from sixth through ninth grade. Findings indicated that caregiver depression and minority status predicted greater caregiver motivation to change. In turn, caregiver motivation was the only direct predictor of FCU intervention response during a 1-year period. Growth in family conflict from sixth through eighth grade mediated the link between FCU response and ninth-grade antisocial behavior. This study explicitly tested core aspects of the FCU intervention model and demonstrated that caregiver motivation is a central factor that underlies family response to the FCU. The study also provided support for continued examination of family process mechanisms that account for enduring effects of the FCU and other family-centered interventions.

Exploring caregiving experiences: caregiver coping and making sense of illness

Objectives: The current research explores how family caregivers (1) make sense of caregiving and (2) cope with their circumstance.Method: We analysed semistructured interviews of 13 caregivers of people with either stroke (n = 5) or dementia (n = 8) and used photographs that caregivers took exemplifying their caregiving experiences to elicit their description of how they made sense of caregiving. This enabled greater insight into caregivers’ perspective of caregiving complementing our use of Interpretative Phenomenological Analysis (IPA) to analyse verbatim transcripts.Results: Emerging themes included (1) making sense of illness including the implications of receiving a diagnosis, caregiving motivations and receiving support, and (2) coping with caregiving, with variance in coping depending on, in part, individual differences in sense making. Caregivers adopted active and information seeking techniques to deal with current problems and to increase their sense of control, but avoidant techniques when considering future logistics of caregiving and when feeling helpless due to the burden they faced. At times caregivers looked on the bright side and made downward comparisons.Conclusion: The combination of elicitation techniques and analysis using IPA established patterns across caregivers and individual differences between caregivers in the meaning they assigned to their caregiving experience. Differences in sense making were based on the context of the caregiving stressor, which in turn influenced the variability in caregiver's coping techniques adopted. The analysis detailed within this article provides evidence that information and service provision must be tailored to individual caregiver experiences.

Feasibility and coverage of implementing intermittent preventive treatment of malaria in pregnant women contacting private or public clinics in Tanzania: experience-based viewpoints of health managers in Mkuranga and Mufindi districts.

BackgroundEvidence on healthcare managers’ experience on operational feasibility of malaria intermittent preventive treatment for malaria during pregnancy (IPTp) using sulphadoxine-pyrimethamine (SP) in Africa is systematically inadequate. This paper elucidates the perspectives of District Council Health Management Team (CHMT)s regarding the feasibility of IPTp with SP strategy, including its acceptability and ability of district health care systems to cope with the contemporary and potential challenges.MethodsThe study was conducted in Mkuranga and Mufindi districts. Data were collected between November 2005 and December 2007, involving focus group discussion (FGD) with Mufindi CHMT and in-depth interviews were conducted with few CHMT members in Mkuranga where it was difficult to summon all members for FGD.ResultsParticipants in both districts acknowledged the IPTp strategy, considering the seriousness of malaria in pregnancy problem; government allocation of funds to support healthcare staff training programmes in focused antenatal care (fANC) issues, procuring essential drugs distributed to districts, staff remuneration, distribution of fANC guidelines, and administrative activities performed by CHMTs. The identified weaknesses include late arrival of funds from central level weakening CHMT’s performance in health supervision, organising outreach clinics, distributing essential supplies, and delivery of IPTp services. Participants anticipated the public losing confidence in SP for IPTp after government announced artemither-lumefantrine (ALu) as the new first-line drug for uncomplicated malaria replacing SP. Role of private healthcare staff in IPTp services was acknowledged cautiously because CHMTs rarely supplied private clinics with SP for free delivery in fear that clients would be required to pay for the SP contrary to government policy. In Mufindi, the District Council showed a strong political support by supplementing ANC clinics with bottled water; in Mkuranga such support was not experienced. A combination of health facility understaffing, water scarcity and staff non-adherence to directly observed therapy instructions forced healthcare staff to allow clients to take SP at home. Need for investigating in improving adherence to IPTp administration was emphasised.ConclusionHigh acceptability of the IPTp strategy at district level is meaningless unless necessary support is assured in terms of number, skills and motivation of caregivers and availability of essential supplies.

To be Truly Alive

Some US prisons are meeting the growing need for end-of-life care through inmate volunteer programs, yet knowledge of the motivations of inmate caregivers is underdeveloped. This study explored the motivations of inmate hospice volunteers from across Louisiana State (n = 75) through an open-ended survey, a grounded theory approach to analysis, and comparison of responses by experience level and gender. Participants expressed complex motivations; Inter-related themes on personal growth, social responsibility and ethical service to vulnerable peers suggested that inmate caregivers experience an underlying process of personal and social transformation, from hospice as a source of positive self-identity to peer-caregiving as a foundation for community. Better understanding of inmate caregiver motivations and processes will help prisons devise effective and sustainable end of life peer-care programs.

An educational intervention to reduce pain and improve pain management for Malawian people living with HIV/AIDS and their family carers: study protocol for a randomised controlled trial

BackgroundMany HIV/AIDS patients experience pain often due to advanced HIV/AIDS infection and side effects of treatment. In sub-Saharan Africa, pain management for people with HIV/AIDS is suboptimal. With survival extended as a direct consequence of improved access to antiretroviral therapy, the prevalence of HIV/AIDS related pain is increasing. As most care is provided at home, the management of pain requires patient and family involvement. Pain education is an important aspect in the management of pain in HIV/AIDS patients. Studies of the effectiveness of pain education interventions for people with HIV/AIDS have been conducted almost exclusively in western countries.Methods/designA randomised controlled trial is being conducted at the HIV and palliative care clinics of two public hospitals in Malawi. To be eligible, patient participants must have a diagnosis of HIV/AIDS (stage III or IV). Carer participants must be the individual most involved in the patient’s unpaid care. Eligible participants are randomised to either: (1) a 30-minute face-to-face educational intervention covering pain assessment and management, augmented by a leaflet and follow-up telephone call at two weeks; or (2) usual care. Those allocated to the usual care group receive the educational intervention after follow-up assessments have been conducted (wait-list control group). The primary outcome is pain severity measured by the Brief Pain Inventory. Secondary outcomes are pain interference, patient knowledge of pain management, patient quality of life, carer knowledge of pain management, caregiver motivation and carer quality of life. Follow-up assessments are conducted eight weeks after randomisation by palliative care nurses blind to allocation.DiscussionThis randomised controlled trial conducted in sub-Saharan Africa among people living with HIV/AIDS and their carers will assess whether a pain education intervention is effective in reducing pain and improving pain management, quality of life and carer motivation.Trial registrationCurrent Controlled Trials ISRCTN72861423.

Whose choice? Self-Determination and the Motivations of Paid Family and Friend Caregivers

This mixed method study focuses on the experiences of 383 family and friend caregivers paid to provide personal care services to Medicaid-eligible disabled and elderly through California’s In-Home Supportive Services program. While much discussion about consumer-directed care concerns the selfdetermination of care recipients, this study investigates related caregivers’ perceived choices about assuming these paid caregiver roles. We find that caregiver perception of choice is rooted in a wide array of cultural and gender norms and is quite variable, both within and across cases. Among this ethnically diverse sample of family and friend caregivers, these norms often underlie the motivations for providing paid care and influence the ways in which caregivers subsequently construct and manage their care arrangements. Findings indicate that related caregivers are well positioned to provide culturally appropriate care that is responsive to both care recipient and caregiver preferences. Moreover, the perception of choice in assuming a paid caregiver role has implications for caregiver well-being. Finally, while the availability of public payment was helpful to many, most caregivers describe motives unrelated to financial reward.

Family caregiving at the intersection of private care by migrant home care workers and public care by nursing staff

This study evaluated private family caregiving at the intersection of private migrant home care and public nursing care on the hospitalization of an older patient. Seventy-three individuals were interviewed, including older hospitalized patients, their family members, accompanying migrant home care workers, and nursing personnel. There was no clear consensus concerning the role of family members. Although family members emphasized care management as their main role, the other three groups emphasized that the family members' mere physical presence was their main role. All four groups identified potential barriers to family caregiving, rather than motives for family caregiving, hence pointing to a potential discrepancy between expected and performed family caregiving roles. An indication of the lack of clarity concerning family caregiving roles stems from the finding that family members were frequently viewed as unengaged and neglectful, yet at times they were criticized for being overly involved in patient care. Implications for the care of hospitalized older adults are discussed.

Positive and negative evaluation of caregiving among three different types of informal care relationships.

Based on the caregiver stress model, we examined how care demands, caregiver motivation, coping style and external support are associated with positive evaluation and caregiver burden among spousal, adult child and other types of care relations. Data from a sample of Dutch informal caregivers of 1,685 older persons (55 and older) were analyzed employing multivariate linear regression analyses for each of the care relationship types. Spouses (N=206) report high positive evaluation and high burden, adult children (N=1,093) report low positive evaluation, and other caregivers (N=386) report high positive evaluation and a low burden. Multivariate linear regression analyses showed that motives and external support were important for positive evaluation but the impact varied among types of caregivers, whereas care demands and not asking for help were associated with burden for all types. Only among 'other' caregiver relationships, positive evaluation was negatively associated with burden. It is concluded that results confirm the dual nature of caregiving among spouses and children. The care context and motivation of the different types of caregivers explain their differences in care evaluation. Various interventions for types of caregivers are discussed.

Effects of Video Feedback on Early Coercive Parent–Child Interactions: The Intervening Role of Caregivers’ Relational Schemas

We examined the effect of adding a video feedback intervention component to the assessment feedback session of the Family Check-Up (FCU) intervention (Dishion & Stormshak, 2007). We hypothesized that the addition of video feedback procedures during the FCU feedback at child age 2 would have a positive effect on caregivers’ negative relational schemas of their child, which in turn would mediate reductions in observed coercive caregiver–child interactions assessed at age 5. We observed the caregiver–child interaction videotapes of 79 high-risk families with toddlers exhibiting clinically significant problem behaviors. A quasi-random sample of families was provided with direct feedback on their interactions during the feedback session of the FCU protocol. Path analysis indicated that reviewing and engaging in feedback about videotaped age 2 assessment predicted reduced caregivers’ negative relational schemas of the child at age 3, which acted as an intervening variable on the reduction of observed parent–child coercive interactions recorded at age 5. Video feedback predicted improved family functioning over and above level of engagement in the FCU in subsequent years, indicating the important incremental contribution of using video feedback procedures in early family-based preventive interventions for problem behaviors. Supportive video feedback on coercive family dynamics is an important strategy for promoting caregiver motivation to reduce negative attributions toward the child, which fuel coercive interactions. Our study also contributes to the clinical and research literature concerning coercion theory and effective intervention strategies by identifying a potential mechanism of change.

Function Focused Care Approaches: Literature Review of Progress and Future Possibilities

Consistent with a care approach that optimizes the underlying ability of the patient/resident, the Omnibus Budget Reconciliation Act of 1987 mandated that residents attain and maintain their highest level of function. Restorative Care, which more recently has been referred to as Function Focused Care 4, is a philosophy of care that focuses on evaluating the older adult's underlying capability with regard to function and physical activity and helping him or her optimize and maintain functional abilities and increase time spent in physical activity. The purpose of this review was to consider the work that has been done in testing function focused care and to provide guidance on the best ways in which to integrate this philosophy within any setting. A systematic review of the available literature studying the impact of function focused care approaches was performed using MEDLINE and CINAHL search engines. The studies included were evaluated based on such things as design, specifically whether or not they were experimental designs (which included randomized trials or quasi experimental studies) or single group studies intended to pilot an intervention or for purposes of feasibility; randomization approaches; sample size/number of residents or patients included; descriptions of the intervention such as if there was a champion utilized (research supported or staff); or if motivation of older adults or caregivers was addressed. Out of 41 articles identified by CINAHL and 148 via MEDLINE, 20 articles met our inclusion and exclusion criteria. Overall the results provided support for the safety and efficacy of function focused care approaches. Continued research is particularly needed to consider best approaches for dissemination and implementation of function focused care and to test function focused care in acute care settings.