Evaluating emotional distress and health-related quality of life in patients with heart failure and their family caregivers:Testing dyadic dynamics using the Actor-Partner Interdependence Model

Purpose: 1) To compare levels of emotional symptoms and health-related quality of life between patients with heart failure and their family caregivers; and 2) to examine whether patients’ and caregivers’ emotional symptoms were associated with their own, as well as their partner’s health-related quality of life. Method: In this cross-sectional study, 41 patients-caregiver dyads (78% male patients, aged 68.6 years; and 83% female caregivers, aged 65.8 years) completed all nine dimensions of the Brief Symptom Inventory and the Minnesota Living with Heart failure Questionnaire. Dyadic data were analysed for 6 sub-scales of the Brief Symptom Inventory, using the Actor–Partner Interdependence Model. Results: There were no statistically significant differences in emotional symptoms and health-related quality of life between patients with heart failure and their caregivers. Patients’ and caregivers’ emotional symptoms were associated with their own health-related quality of life. Caregivers’ anxiety, phobic anxiety, obsession-compulsion, depression and hostility negatively influenced their partner’s (i.e. the patient’s) health-related quality of life. There were no partner effects of patients’ emotional symptoms on the health-related quality of life of caregivers. Conclusions: The results of this study suggest that patients may be particularly vulnerable to the emotional distress, i.e. thoughts, impulses and actions of their caregivers. It may be possible to improve patients’ health-related quality of life by targeting specific detrimental emotional symptoms of caregivers

Providing Basic Needs and Encouragement as Strategies in Managing Aggression in Dementia Clients

Purpose: The experiences of caregivers in managing dementia clients with aggressive behaviour have been an issue in nursing homes. This study utilized the fact that there is no significant strategy for managing aggression effectively. The aim of the study is to explore the experiences of caregivers in managing dementia clients with aggressive behaviour in nursing home in Jakarta, Indonesia.Method: This study employed a hermeneutic phenomenological approach so that caregivers were able to explore the phenomenon of aggression by dementia residents in the nursing home. Six experienced caregivers were interviewed in this study to uncover caregivers\u27 strategies they use in managing aggression in dementia residents.Result: The findings in this study were several strategies that have been used by caregivers to manage aggressive behaviour among dementia residents in the nursing home: providing basic needs and encouragement.Conclusion: The findings suggested caregivers to implement the strategies for managing aggression in dementia residents. Due to a limited number of related studies in Indonesia, this study recommended for further research to other nursing homes in Indonesia to determine if other strategies to manage aggression exist

Strategies for Sustaining Self Used by Family Caregivers for Older Adults With Dementia

The negative health consequences of caring for an older adult family member with dementia are well documented. However, not all family caregivers experience these negative health consequences. The purposes of this study were to describe strategies family caregivers use to help them continue to provide care for an older family member with dementia despite challenges and describe these family caregivers’ resilience and psychological distress. A mixed methods design was used with a narrative approach dominant and standardized scales for resilience and psychological distress used to enhance the description of the sample. Data were collected through telephone interviews with 18 family caregivers residing in an urban area. The findings indicate that family caregivers used four strategies to sustain the self: drawing on past life experiences, nourishing the self, relying on spirituality, and seeking information about dementia. Understanding strategies used by family caregivers to sustain themselves is essential for providing holistic nursing care and developing effective interventions

Burden and Depression among Caregivers of Visually Impaired Patients in a Canadian Population

Purpose/Background. This study reports the degree of burden and the proportion at risk for depression among individuals who provide care to visually impaired patients. Study Design. This is clinic-based, cross-sectional survey in a tertiary care hospital. Methods. Caregivers were considered unpaid family members for patients whose sole impairment was visual. Patients were stratified by vision in their better seeing eye into two groups: Group 1 had visual acuity between 6/18 and 6/60 and Group 2 were those who had 6/60 or worse. Burden was evaluated by the Burden Index of Caregivers and the prevalence of being at risk for depression was determined by the Center for Epidemiologic Studies Depression scale. Results. 236 caregivers of 236 patients were included. Total mean BIC scores were higher in Group 2. Female caregivers, caregivers providing greater hours of care, and caregivers of patients who have not completed vision rehabilitation programs are at higher risk for depression

Caregivers' experiences with the new family‐centred paediatric physiotherapy programme COPCA : a qualitative study

Caregivers' experiences during early intervention of their infant with special needs have consequences for their participation in the intervention. Hence, it is vital to understand caregivers' view. This study explored caregivers' experiences with the family-centred early intervention programme "COPing with and CAring for infants with special needs" (COPCA)

Quality of life for caregivers of a child aged 6-16 years with Autistic Spectrum Disorder and/or an intellectual disability : a comparative study : a thesis presented in fulfilment of the requirements for the degree of Master of Arts in Psychology at Massey University, Turitea, New Zealand

Quality of life for caregivers of children with autistic spectrum disorder and/or an intellectual disability was compared to quality of life for those caring for a normally developing child. Participants were caregivers of children between 6 - 16 years of age who were divided into two groups: Caregivers of disabled children (Group 1, n = 60) and caregivers of normally developing children (Group 2, n = 13). The research investigated differences of overall quality of life between groups. Within Group One the influence on quality of life for caregivers was investigated in relation to the child's behaviour, level of support the child requires to complete activities of daily living, caregivers marital status, caregivers socio-economic level, and caregivers satisfaction with perceived supports. The Quality of Life Index and the Nisonger Child Behavior Rating Form were used to determine quality of life and problem behaviours. Results showed a difference in overall quality of life between groups. Child's behaviour was found to have a significant relationship with caregiver‘s quality of life. Satisfaction with perceived supports had a weak relationship to caregiver‘s quality of life. No statistically significant relationship was found between caregiver‘s quality of life and the child's activities of daily living requirements, caregiver‘s marital status or caregiver‘s socio-economic status. Quality of life for caregivers of developmentally disabled children was shown to be lower than the general population. New Zealand is currently in a state of flux in regards to addressing and refining disability support services. Research that further investigates these results may enhance service delivery and result in better outcomes for those supporting children with a disability

Providing sex and relationships education for looked-after children: a qualitative exploration of how personal and institutional factors promote or limit the experience of role ambiguity, conflict and overload among caregivers

Objectives: To explore how personal and institutional factors promote or limit caregivers promoting sexual health and relationships (SHR) among looked-after children (LAC). In so doing, develop existing research dominated by atheoretical accounts of the facilitators and barriers of SHR promotion in care settings. Design: Qualitative semistructured interview study. Setting: UK social services, residential children’s homes and foster care. Participants: 22 caregivers of LAC, including 9 foster carers, 8 residential carers and 5 social workers; half of whom had received SHR training. Methods: In-depth interviews explored barriers/facilitators to SHR discussions, and how these shaped caregivers’ experiences of discussing SHR with LAC. Data were systematically analysed using predetermined research questions and themes identified from reading transcripts. Role theory was used to explore caregivers’ understanding of their role. Results: SHR policies clarified role expectations and increased acceptability of discussing SHR. Training increased knowledge and confidence, and supported caregivers to reflect on how personally held values impacted practice. Identified training gaps were how to: (1) Discuss SHR with LAC demonstrating problematic sexual behaviours. (2) Record the SHR discussions that had occurred in LAC’s health plans. Contrary to previous findings, caregivers regularly discussed SHR with LAC. Competing demands on time resulted in prioritisation of discussions for sexually active LAC and those ‘at risk’ of sexual exploitation/harm. Interagency working addressed gaps in SHR provision. SHR discussions placed emotional burdens on caregivers. Caregivers worried about allegations being made against them by LAC. Managerial/ pastoral support and ‘safe care’ procedures minimised these harms. Conclusions: While acknowledging the existing level of SHR promotion for LAC there is scope to more firmly embed this into the role of caregivers. Care needs to be taken to avoid role ambiguity and tension when doing so. Providing SHR policies and training, promoting interagency working and providing pastoral support are important steps towards achieving this

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

Background: Family caregivers of stroke survivors often feel unprepared and overwhelmed post discharge with numerous unmet needs. Occupational therapists can play an integral role in addressing family caregivers’ needs. Limited research exists on assessment practices of occupational therapists in identifying caregivers’ needs poststroke. This study explores the practices and perspectives of occupational therapists in assessing unmet caregivers’ needs. Method: A cross-sectional, mixed methods research design was used to electronically survey 15 occupational therapists. Part 1 of the survey explored participant methods for identifying caregivers’ needs and their views on using formal caregiver assessment tools. Part 2 gathered participant perspectives on three selected caregiver assessments. Descriptive statistics and thematic analysis were used to interpret the data. Results: The participants perceive formal assessments as beneficial. However, they use informal strategies to assess the unmet needs of caregivers rather than formal assessment. Reimbursement challenges, productivity pressure, and questionable necessity are barriers to conducting formal assessments. Advantages and disadvantages of each assessment are discussed. Conclusion: Occupational therapists face barriers to conducting formal assessment across settings. Implementation of recent policies is needed to further support occupational therapy’s role in addressing caregivers’ needs. This study can inform future development of assessment tools tailored to occupational therapy

Caring for an Aging Loved One

Caregivers serve as a critical extension of US health care system. Approximately 80% of adults requiring long-term care currently live at home in the community, and unpaid family caregivers provide 90% of their care. Among caregivers, 81 % feel inadequately trained for the skills they perform and those who report the highest burden are more likely to be less educated, to live with the care recipient, and to perceive they had no choice in assuming the caregiver role. The goal of this project was to identify local resources available for caregivers and to understand the barriers to accessing these supports. An educational booklet was created to increase awareness of these resources, to address frequently asked questions from caregivers of elderly individuals, and to connect them with local organizations.https://scholarworks.uvm.edu/fmclerk/1559/thumbnail.jp

Helping carers to care: the 10/66 dementia research group's randomized control trial of a caregiver intervention in Peru

OBJECTIVE There is a need, in the absence of formal services, to design interventions aimed at improving the lives of people with dementia and their families. This study tested the effectiveness of the 10/66 caregiver intervention among people with dementia and their caregivers in Lima, Peru. METHOD Design/participants: a randomized controlled trial was performed involving 58 caregivers of people with dementia that received the intervention in the beginning of the trial (n = 29) or six months later (n = 29). The intervention consisted of three modules: 1) assessment (one session); 2) basic education about dementia (two sessions); and 3) training regarding specific problem behaviors (two sessions). Main outcome measures: Caregivers and patients with dementia were assessed at baseline and after six months. For caregivers, the measures included strain (Zarit Burden Interview), psychological distress (SRQ-20), and quality of life (WHOQOL-BREF). Dementia patients completed scales assessing behavioral and psychological symptoms (NPI-Q) and quality of life (DEMQOL). RESULTS Caregivers in the intervention group reported significantly decreased strain measures six months after the intervention compared to controls. No group differences were found in respect to the caregivers' psychological distress and to quality of life in both caregivers and patients. CONCLUSION The 10/66 intervention seems to be as effective as similar interventions used in more developed countries