Caregiver Motivation Research Articles

The Blessings and the Curses of Filial Piety on Dignity at the End of Life: Lived Experience of Hong Kong Chinese Adult Children Caregivers

This study critically examines the evolving nature of filial piety and the role that it plays in the contemporary experience of “living and dying with dignity” among Hong Kong Chinese families facing the end of life. Meaning-oriented interviews were conducted with a purposive sample of 15 adult-children caregivers, ages 30 to 62, to elicit their narratives and stories in caring for a dying elderly parent. Qualitative content analysis reveals that although traditional filial beliefs provided motivation for family caregiving, the regrets of unfulfilled filial responsibilities create emotional distance between parents and adult children, which acts as a cultural barrier for reconciliation and contentment at life's final margin. These findings underscore the importance of intergenerational dynamics and interactions in the transformation of filial attitudes and behaviors, highlighting the importance of reciprocal relationships (versus authority relationship), mutual support (versus complete obedience), compassionate duty (versus obligatory duty), emotional connection (versus task fulfillment), and appreciation and forgiveness (versus guilt and shame) in the promotion of dignity at the end of life. Policy and clinical implications are discussed.

Dor Orofacial: Compreendendo o Processo Pelos Pontos de Vista do Paciente e do Cuidador

A common situation reported by patients seeking clinical treatment is the presence ofpain. Pain is a subjective and personal experience influenced by cultural experience,knowledge of the situation, attention and other psychological variables. This study aimed to provide to the student health care, teachers and patients, through interviews and theMcGill Pain Questionnaire tool, better understanding of the mechanisms triggering thetemporomandibular pain (TMP), also the efficiency of occlusal splint use. The best clinical/client relationship by means of discussion on the signs, symptoms and intensity ofpain reported, as well as the motivation of caregivers to better care and humanized assistanceTMP chronic customer, seeing positive action in teaching, research and extensionbetter quality care were encouraged. After three years of clinical follow-up of 39 patientswith pain assessment qualitatively, it can be concluded that the expectations of clientsand caregivers regarding the clinical treatment of TMD are not always met in equal importance,although the clinical treatment with plaque being satisfactory. It was noted alsothe lack of adherence to treatment and follow-up case, after pain ceasing.

Ethnicity, familism and willingness to care: Important influences on caregiver mood?

Objective: Few studies have to date examined the effects of ethnicity on caregiver motivations, coping responses and mood. This theoretically informed study uses the socio-cultural model of stress and coping to explore these relationships amongst a White-British and British South-Asian caregiver sample. Method: A total of 235 primary family caregivers were recruited for a cross-sectional questionnaire survey; of which 162 were White-British and 73 were British South-Asian. Results : British South-Asian caregivers differed from White-British caregivers on several variables within the stress-coping framework. British South-Asian caregivers were younger, had significantly higher levels of familism, used significantly more behavioural disengagement and religious coping and reported having significantly less support than White-British caregivers. White-British caregivers were more likely to make use of substances and humour as coping methods, and also in these caregivers, familism was significantly related to caregiver depression. Whilst levels of willingness to care did not differ between the two caregiver groups, opposing relationships were seen in the association between willingness to care and caregiver anxiety. Regression analyses found that self-blame explained a significant proportion of variance in South-Asian anxiety and depression, whereas depression amongst White-British caregivers was associated with high use of substances, low use of humour and low mean satisfaction with support. Conclusion: These findings offer support to the socio-cultural model of stress and coping in that coping is associated with two outcomes (anxiety and depression), but motivational factors are also highlighted which have additional implications for the development of culturally specific interventions aimed at reducing caregiver distress.

Preparing Heart and Mind Following Prenatal Diagnosis of Complex Congenital Heart Defect

Drawing on attachment and caregiving theory and the concept of motivation, the purpose of this descriptive study was to examine parents' retrospective accounts of their prenatal experiences after receiving the diagnosis of a fetal heart defect. These parents constituted a subgroup of participants in a larger longitudinal study of parenting an infant with a complex congenital heart defect. Data were derived from 14 semistructured interviews with 13 mothers and 3 fathers in the home or hospital setting. A directed content analysis yielded a central category of preparing heart and mind for infant caregiving. Preparing heart and mind is a preliminary caregiving goal within the caregiving system that generates intentions and expectations indicative of specific caregiving motivations to relate to the baby, handle circumstances practically, and manage infant medical care. A theoretical model illustrates the prenatal process these parents engaged in to provide care to their infants with life-threatening medical conditions.

The health effects of caregiving by grandparents in Taiwan: an instrumental variable estimation

Previous research on the health effects of caring for grandchildren has had variable findings, including both positive and negative effects on the health of grandparents. The estimated effects of caregiving may be affected by selection, with the health of grandparent affecting the likelihood of undertaking caregiving. The health effects of caregiving also likely differ according to the cultural motivations for caregiving by grandparents. This paper assesses whether selection into caring for grandchildren affects the estimated effects of caregiving on the health of Taiwanese grandparents. We used four waves (1993–2003) of the Survey of Health and Living Status of the Elderly in Taiwan to estimate the effect of grandparent caregiving on self-rated health, mobility, and depression. To control for unobserved selection into caregiving, we employed time-varying instrumental variables (the number of grandchildren and marital status of adult children) in addition to person fixed effects. After adjusting for baseline differences, caregivers had better self-rated health, fewer mobility limitations, and fewer depressive symptoms compared to the non-caregivers, which suggest evidence of health improvement for grandparents. Instrumental variable analysis showed that caring for grandchildren was endogenously determined with grandparents’ mobility limitations, and grandparent caregivers benefited from a significant reduction in the number of mobility limitations. Our finding suggests that caring for grandchildren can be beneficial for the health of Taiwanese grandparents and supports our hypothesis that a culturally expected role of caregiving results in role enhancement.

Experiences of long‐term home care as an informal caregiver to a spouse: gendered meanings in everyday life for female carers

In this article, we explore the gender aspects of long-term caregiving from the perspective of women providing home care for a spouse suffering from dementia. One of the most common circumstances in which a woman gradually steps into a long-term caregiver role at home involves caring for a spouse suffering from dementia. Little attention has been paid to examining the experiences and motivations of such caregivers from a feminist perspective. Twelve women, all of whom were informal caregivers to a partner suffering from dementia, were interviewed on the following themes: the home, their partner's disease, everyday life, their relationship and autonomy. The results of these interviews were analysed in relation to gender identity and social power structures using a feminist perspective. The findings of this study show that the informants frequently reflected on their caregiving activities in terms of both general and heteronormative expectations. The results suggest that the process of heteropolarisation in these cases can be an understood as a consequence of both the spouse's illness and the resulting caring duties. Also, the results suggest that the act of caring leads to introspections concerning perceived 'shortcomings' as a caregiver. Finally, the results indicate that it is important to recognise when the need for support in day-to-day caring is downplayed. Women view their caregiving role and responsibilities as paramount; their other duties, including caring for themselves, are deemed less important. We stress that the intense commitment and responsibilities that women experience in their day-to-day caring must be acknowledged and that it is important for healthcare professionals to find mechanisms for providing choices for female caregivers without neglecting their moral concerns. Female carers face difficulties in always living up to gendered standards and this need to be considered when evaluating policies and practices for family carers.

Caregiving Motivations and Developmentally Prompted Transition for Mothers of Prematurely Born Infants

Parenting transition is a process prompted by infant developmental changes and may be defined by motivations for caregiving and the goals they indicate. Qualitative exploration of neonatal and 1-year feeding experience of 22 mothers of very-low-birth-weight infants revealed 3 types of caregiving-related motivations-nurturing, relating, and shaping quality of life. The clusters of motivations differed between ages and across mothers, suggesting transition in parenting reflective of both infant development and maternal goals. Study with a larger sample is needed to examine change in caregiving motivations and their function in characterizing parenting transitions.

Paid caregiver motivation, work conditions, and falls among senior clients

The purpose of this study was to determine the motivation of paid non-familial caregivers of seniors, understand more about their work conditions, and identify any links to negative outcomes among their senior clients. Ninety-eight paid caregivers (eighty-five female and thirteen male), recruited from multiple sites (i.e. senior centers, shopping malls, local parks, lobbies of senior apartments, caregiver agency meetings) completed face-to-face questionnaires and semi-structured interviews. We found that 60.7% of participants chose to become a caregiver because they enjoyed being with seniors while 31.7% were unable to obtain other work, and 8.2% stated it was a prerequisite to a different health related occupation. Caregivers stated that the most challenging conditions of their work were physical lifting (24.5%), behavioral and psychological symptoms of dementia (24.5%), senior depression/mood changes (18.4%), attachment with impending death (8.2%), missing injuries to client (5.1%), lack of sleep (4.1%), and lack of connection with outside world (3.1%). Caregivers who reported that the best part of their job was the salary, flexible hours, and ease of work were significantly more likely to have clients who fell and fractured a bone than those who enjoyed being with seniors (job characteristics, 62.5% vs. senior enjoyment, 25.6%; p<0.004). We concluded that in pursuing their occupation, paid caregivers are motivated commonly by their love of seniors and also by their lack of other job opportunities. Paid caregivers frequently face challenging work conditions. When seeking a caregiver for a senior, motivation of the caregiver should be considered when hiring.

Negotiating the Social Family: Migrant Live-in Elder Care-workers in Taiwan

Abstract In response to difficulties faced by families in caring for the aged, the government of Taiwan launched a foreign live-in caregiver programme in 1992. This paper draws upon literature on family, domestic work and motives for caregiving to examine how the long-term co-residence of migrant live-in elder care-workers reconfigures Taiwanese families. Our analysis, based on in-depth interviews conducted in the summer of 2009 with 20 Vietnamese migrant live-in care-workers, uses the concept of ‘social family’ to document the close emotional and quasi-familial relationships between foreign care-workers and members of Taiwanese families. Narratives shed light on the dynamics of these relationships and show the limitations of the concept. The inherent asymmetrical employer-employee power relationship remains, while workers constantly negotiate contradictory feelings and positions in the intimate sphere of the employers’ private homes. This paper emphasizes the mutual dependency that migrants experience as both workers and members of a new family. Rather than being seen as cheap, disposable labour, migrants become indispensable to the families. It is this dependency and intimacy that make them part of the family, but also continues to make them vulnerable to abuse.

Stress and Grief Among Family Caregivers of Older Adults With Cancer: A Multicultural Comparison From Hawai‘i

In this study the authors investigated stress, anticipatory mourning, and cultural practices among family caregivers from independent and interdependent cultural groups. Focus groups were used to collect data from 56 caregivers providing care to family members with terminal cancer, representing four cultural groups in Hawai‘i: Chinese, European Americans, Japanese, and Native Hawaiians. Participants from all four cultural groups identified similar stressors and agreed that support groups helped them cope with the stresses and sadness they were experiencing and differed in culturally based motivations for caregiving, perceived roles, and processing of grief. The findings of this study indicated a need for additional conceptual models of the caregiving trajectory and more culturally sensitive strategies, particularly indirect methods, for working with diverse populations of caregivers.

Subjective Burden and Cultural Motives for Caregiving in Informal Caregivers of Older People

The aims of this study were to investigate variables related to cultural caregiving motives (obligation and reciprocity) and to analyze the relationship between these cultural caregiving motives and subjective burden in informal caregivers of disabled older people. A secondary analysis of the last cross-sectional Spanish survey of informal caregivers of older people (n= 1,284, probability sample) was performed. Measurements included sociodemographic characteristics of caregivers (gender, age, relationship with care recipient, primary caregiver status, and duration of caregiving), intensity of care (hours per week, type of care, and number of activities of daily living [ADL] assisted), cultural motives for caregiving (obligation and balanced reciprocity), and caregiver subjective burden. Statistical analyses included descriptive (means, percentages, and 95% confidence intervals), bivariate (chi-square test), and multivariate (binary logistic regression) analyses. Obligation and reciprocity were higher in spouses than in other relatives and in nonrelatives and obligation increased with age as well as providing help with ADL. Balanced reciprocity was high in men. Obligation was not related with subjective burden, whereas balanced reciprocity was positively related. Reciprocity had a protective effect on subjective burden. No cultural differences have been found on this issue. Obligation may be a multidimensional concept that encompasses personal beliefs and social demands. Balanced reciprocity is useful for early prevention and early intervention of subjective burden and must be included in nursing care plans for caregivers. Cultural factors support the comprehension of the caregiving process.

Family caregivers of hospitalized adults in Israel: A point‐prevalence survey and exploration of tasks and motives

The prevalence of family inpatient caregiving in Israel, its extent, content, and related caregiver and patient variables were examined. Of 1,076 patients surveyed, 744 (69%) had family caregivers, and 513 caregivers were interviewed. Caregivers averaged 8 hours a day at the hospital and most frequently carried out monitoring tasks. Their main motivation was the desire to help the patient. Variables that explained overall caregiving tasks were the desire to help the patient (β = .38), to ensure quality of care (β = .19) and external pressure (β = .19). Variables that explained number of hours spent in caregiving were patient's age (β = -.28) and caregiver motivation related to benefits (β = -.19) and separation concerns (β = .18). Staff should identify caregivers, assess their motivations, and help determine appropriate tasks.

Motives for caring: relationship to stress and coping dimensions

Although research has highlighted the importance of including cultural factors in the analysis of caregiver stress, little is known about the effects of motives for caregiving on the stress and coping process. This study is aimed at analyzing the dimensional structure of the Cultural Justifications for Caregiving Scale - Revised (CJCS-R), and the effects of motives for caregiving on stressors, caregiver resources and outcome variables. Dementia caregivers (N = 166) were interviewed and the following variables were assessed: motives for caregiving (CJCS-R), stressors (frequency of behavioral problems), resources (rumination, cognitive reappraisal), and outcomes (depression, anxiety and anger). A bidimensional structure was obtained for the CJCS-R, and the two factors were labeled Intrinsic and Extrinsic motives for caregiving. Participants were divided into four groups corresponding to four motivation profiles: HIHE = High Intrinsic Motives + High Extrinsic motives; LILE = Low Intrinsic Motives + Low Extrinsic Motives; HILE = High Intrinsic Motives + Low Extrinsic Motives; and LIHE = Low Intrinsic Motives + High Extrinsic Motives. No differences between groups were found in frequency of behavioral problems. Caregivers in the LIHE group had significantly worse consequences on caregiver resources and outcome variables compared to the other groups. The results support the usefulness of considering motives for caregiving as a multidimensional construct. Analyzing caregivers' motivation profiles may constitute a useful strategy for identifying caregivers at risk. Caregivers scoring simultaneously low on intrinsic motives and high on extrinsic motives may be at particular risk for negative caregiving outcomes.

Clinical and microbiological evaluation of the use of toothpaste containing 1% chlorhexidine and the influence of motivation on oral hygiene in patients with motor deficiency

Patients with motor deficiency have variable difficulties with mechanical plaque control, and as a consequence, the incidence of dental caries and periodontal disease can be higher in these patients. The objective of this study was to evaluate the clinical and microbiological efficacy of a toothpaste containing 1% chlorhexidine, which was used by patients with motor deficiency for 14 days. The reduction in plaque and gingival index and the impact on salivary microorganisms was evaluated. We conclude that the motivation of caregivers to carry out oral hygiene for patients with mental and motor deficiency is of great importance and is effective in reducing the formation of plaque as long as it is continuously reinforced. The use of chlorhexidine-containing toothpaste significantly reduced the plaque index and microorganism count between days 0 and 14. A reduction was also observed in the group that used a dentifrice without the chlorhexidine, but this difference was not significant.

Home-based care for people living with AIDS in Zimbabwe: voluntary caregivers' motivations and concerns

Similar to the healthcare systems of other resource-constrained countries with a high prevalence of HIV and AIDS, Zimbabwe's healthcare system encourages communities and non-governmental organisations (NGOs) to support the public healthcare sector by initiating home-based care activities and training volunteers to assist households in caring for individuals living with HIV. As part of the response, groups of volunteers were formed to provide basic material, social, nursing, and other kinds of support to members of AIDS-affected households. My research in Bulawayo, Zimbabwe, shows that motives for volunteering included: 1) religious values; 2) desire for prestige; 3) empathy derived from witnessing the suffering caused by AIDS illness; 4) hope of securing caregiving support in the future; 5) hope of enlarging one's network of those with access to political and economic power; and 6) hope of receiving material benefits in the future. This study further documents that volunteers' commitment to caregiving diminished between the early 1990s and 2009 due to: 1) the stigma of HIV and AIDS; 2) lack of funding, preventing volunteers from providing the needed care; 3) the large numbers of sick who are discharged from hospitals and clinics into home care; and 4) volunteers' ‘burnout.’ Strengthening volunteers' motivations for caregiving and addressing their concerns are crucial for providing effective care for individuals living with HIV or AIDS. In Zimbabwe, improvement of voluntary caregiving programmes requires better integration with the national healthcare system at the clinic level as well as collaboration with NGOs, community leaders and church groups, which have the potential to positively influence volunteers' commitment to caregiving.

The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: a systematic review

The majority of people in the early and middle stages of dementia are cared for at home by non-paid caregivers, the majority of whom will be family members. Two factors which could have an impact on the quality of care provided to the care-recipient are the caregiver's motivations for providing care and the meaning s/he finds in caregiving. The aim of this review is to explore the potential impact of both meaning and motivation on the wellbeing of caregivers of people with dementia. The review also explores individual differences in motivations to provide care. This was a systematic review of peer-reviewed empirical studies exploring motivations and meanings in informal caregivers of people with dementia. Four studies were identified which examined the caregiver's motivations to provide care. Six studies were identified which examined the meaning that caregivers found in dementia caregiving. Caregivers' wellbeing could be influenced by the nature of their motivations to care. In addition, cultural norms and caregivers' kin-relationship to the care-recipient impacted on motivations to provide care. Finding meaning had a positive impact on caregiver wellbeing. The limited evidence currently available indicates that both the caregiver's motivations to provide care and the meaning s/he finds in caregiving can have implications for the caregiver's wellbeing. More research is needed to explore the role of motivations and meaning in dementia caregiving.

Becoming involved in raising a relative's child: reasons, caregiver motivations and pathways to informal kinship care

ABSTRACTInterviews with 207 informal kinship caregivers describe a dynamic process that influences how children come to live with a relative other than their parent. This process involves three overlapping and often simultaneously occurring factors: (1) the reasons the children's parents were unable to care for them; (2) the caregiver's motivation for assuming responsibility for the child; and (3) the pathways or routes that children took to the caregiver's home. Understanding these factors and their mutual and simultaneous influence is important as we shape policies, programs and interventions to support families as they consider whether to care for a relative's child and once they assume this responsibility.

The effects of motives for caregiving and family relationship quality on caregiving burden/reward of the spouse caregivers of frail elderly in Korea: A focus on gender differences

The effects of motives for caregiving and family relationship quality on caregiving burden/reward of the spouse caregivers of frail elderly in Korea: A focus on gender differences

Decision pathways and individual motives in informal caregiving during cancer treatment in Turkey

The impact of informal care to both the patients' and carers' physical and psychological well-being is studied in detail. However, despite the social and clinical impact of this role, decision pathways and individual motives in becoming a caregiver have attracted less attention. The study aims to explore individual and collective decision pathways of becoming an informal caregiver, as well as individual motives and contextual factors that contribute to this role during cancer treatment in Turkey. Fourty-nine women and 10 men informal caregivers were recruited from the oncology department of the Marmara Medical School Hospital in Istanbul. Two trained research assistants carried out semi-structured interviews. A qualitative content analysis was conducted. Results indicated that individual decisions, social and family network decisions, role-dependent obligations were the primary paths of decision of becoming an informal caregiver. Three personal motives for caregiving were sense of social responsibility and obligation, personal and emotional connectedness, and sense of competence. The decision to become caregivers are closely connected with individual experiences and social and cultural factors. Understanding the individual and cultural context of findings might contribute to the design of appropriate support programs for informal caregivers in oncology clinics.

Frontotemporal dementia (FTD) patients living at home and their spousal caregivers compared with institutionalized FTD patients and their spousal caregivers

Patients with frontotemporal dementia (FTD) need complete care in the final stages of the disease. Some informal caregivers continue the in-home care whereas others institutionalize. This study identifies differences between in-home FTD patients and their caregivers (FTDH) and institutionalized FTD patients (FTDN) and their caregivers. Twelve in-home and 24 institutionalized FTD patients in the final stages of the disease, and their spousal caregivers, were observed. Neuropsychiatric function disorders, dementia duration and severity, burden, mental and physical health, quality of the current and premorbid relationship and caregiver motivation were analysed. The majority of FTDH patients had dementia of shorter duration and showed residual independence. In FTDH patients, neuropsychiatric symptoms were more often present whereas apathy and disinhibition were more intense in FTDN patients. FTDH caregivers felt more emotionally burdened but had better mental health. Caregiver motivations were similarly present in FTDH and FTDN caregivers, while the love-motivated caregivers had worse physical and mental health. Our data suggest that all FTD caregivers could benefit from psychological support. Motivation for caregiving has intervention potential.