The experience of caregiving for children with rare musculoskeletal conditions: a qualitative study in arthrogryposis multiplex congenita.

BACKGROUND: Arthrogryposis multiplex congenita (AMC) is a group of rare musculoskeletal conditions that is associated with complex healthcare needs and long-term follow up. The literature reports significant direct, indirect, and psychosocial costs for caregivers of children with neuromuscular conditions. Due to mobility limitations and frequent hospital visits, caring for a child with AMC is complex. Other challenges experienced by caregivers include financial strain, job changes, changes in interpersonal relationships and abandonment. This study was aimed at exploring the lived experience of caregivers of children with AMC. METHODS: The present study is part of a larger global mixed methods study. In the initial quantitative aspect of the study, caregivers (n = 158) of children and youths with AMC (aged 0-21 years) responded to a cost of care survey on an electronic platform. Of the 158 participants, 13 caregivers then further consented to participate in the qualitative aspect of the study in which a 60-min semi-structured, individual interview was conducted remotely. Open-ended questions were developed to gain a deeper understanding of the direct and indirect costs of care, their impact on the caregivers' lives and the quality of the care-giving experience. Interviews were transcribed, and a coding scheme was developed drawing from both the existing literature and the content of the interviews. A deductive and inductive thematic analysis was used to analyze the qualitative data using the NVivo® qualitative data analysis software. RESULTS AND CONCLUSION: Five themes describing the experiences of caregivers of children with AMC emerged from the analysis of the qualitative data: 1. Impact of the caregiving experience; 2. Cost of childcare; 3. Support system for care; 4. Managing and navigating care; 5. Supporting the child's growth and development. In addition to the results of the thematic analysis, specific recommendations shared by the caregivers included the need for support groups and provision of support to youths to prepare them for adolescence. These findings will inform resource allocation, policymaking, and support services for children with rare conditions, their caregivers and families.

Developing a conceptual model for understanding caregiving experience and their impacts on quality of life for Chinese breast cancer family caregivers: A qualitative study.

AIM: The purpose of this study was to understand the caregiving experiences of breast cancer family caregivers and explore the profound impacts of those experiences on their quality of life. DESIGN: A qualitative research method was used. METHODS: We extended invitations to 23 family caregivers of outpatients and inpatients receiving breast surgery and oncology treatments in Taiyuan, China, to participate in semi-structured interviews. The interviews were audio-recorded and transcribed verbatim. Thematic analysis was employed to analyse the interview data. RESULTS: Four themes and associated categories were identified: (1) changes in family dynamics, (2) the socio-medical context, (3) interactions between family and society, (4) self-efficacy and nine subthemes and their related categories, where virtually all participants expressed future uncertainty, emotional contagion, and personal challenges, and self-efficacy had a moderating influence on the first three themes. PATIENT OR PUBLIC CONTRIBUTION: This study did not involve direct participation of patients or the public. However, their experiences and perspectives on caregiving were indirectly reflected through the insights provided by the family caregivers who participated in the interviews. Their valuable input contributed to a deeper understanding of the caregiving experience and its impact on the quality of life for Chinese breast cancer family caregivers.

Impact of a COVID-19-Related Lockdown on the Experience of Informal Caregiving in Singapore.

INTRODUCTION: Lockdowns, while limiting COVID-19 transmission, can affect provision of care by informal caregivers and their caregiving experience. We assessed, among informal caregivers in Singapore, (a) the perceived impact of a 2-month (April to May 2020) nationwide lockdown on their care provision, (b) correlates of different perceptions of the impact of the lockdown on care provision, and (c) association of different perceptions of the impact with negative and positive experiences of caregiving. METHODS: In the August 2020 wave of the Singapore Life Panel (SLP; nationally representative, longitudinal monthly survey of Singapore citizens and permanent residents aged 50-70 years at baseline), 1,094 participants identified as informal caregivers reported whether their care provision became easier, remained the same, or became harder during the lockdown, compared to before the lockdown. We used multinomial logistic regression to assess the association of caregiver, care recipient, and caregiving context characteristics with their perceptions. Linear regression models examined the association of their perceptions with negative and positive experience domains of the modified Caregiver Reaction Assessment. RESULTS: Just over one-third (36.1%) of the informal caregivers reported that their care provision became harder during the lockdown compared to before the lockdown. However, nearly one-fifth (18.0%) said that it became easier, and the rest (45.9%) said that it remained the same. Care provision was more likely to be perceived as having become harder among caregivers who were male, of Chinese ethnicity, in worse health, whose care recipients had functional limitations, who did not have caregiving support from cohabiting family members before the lockdown, and who had caregiving support from non-cohabiting family members before the lockdown. The perception that care provision became easier was less likely among caregivers who were of higher age, were unemployed, were socially isolated, and whose care recipients had functional limitations. Caregivers who perceived that care provision became harder during the lockdown were worse-off in negative experiences of caregiving. CONCLUSION: A nationwide lockdown did not make care provision harder for all informal caregivers. However, informal caregivers for whom it did were more likely to have greater negative experiences of caregiving. The heterogeneity of the impact of lockdowns and the possibility of offering flexibility to non-cohabiting family members who support caregiving should be important considerations when planning for such disruptions.

A Profile of Positive and Negative Caregiving Experiences Among Canadian Older Adults: The Relevance of Demographic and Care Contexts.

This study examines the predictors of burdens and benefits of informal caregiving to caregivers by examining how demographic characteristics and care contexts simultaneously predict separate scales of positive and negative caregiving experiences. The Caregiving, Aging, and Financial Experiences study is a national survey which examines a representative sample of 4010 Canadians between the ages of 65 and 85, including 1641 informal caregivers that are the focus of the current analysis. Seemingly unrelated regression analyses show that there are similarities as well as differences in predictors between the two caregiving experiences. More frequent involvement in caregiving is associated with greater negative caregiving experiences but those are not significant predictors for less positive caregiving experiences. This study demonstrates that there are some overlaps of determinants of the two caregiving experiences, and a few of them are distinct. Further studies should warrant to identify additional, unobserved factors explaining variance in positive caregiving experience.

Social support, positive caregiving experience, and caregiver burden in informal caregivers of older adults with dementia.

Introduction: Dementia is currently one of the major causes of disability and dependency among older adults worldwide. Cognitive dysfunction, neuropsychiatric symptoms, somatic complaints, and functional impairment fundamentally affect not only a person living with dementia (PLwD), but also his/her informal caregiver(s), often resulting in a high caregiver burden. A number of variables, including the caregiver's sociodemographic characteristics, the clinical characteristics of PLwD, social support, and the caregiver's personal resources determine the caregiver's burden. Objectives: The aim of this study was to investigate the associations of caregiver burden in informal caregivers of PLwD with perceived social support, positive caregiving experience, and applying therapeutic communication methods. Methods: The data were collected from September 2021 to February 2022 among 115 "PLwD-informal caregiver" dyads in the community settings in Slovakia. Measures included the Zarit Burden Interview (ZBI-12), the Oslo Social Support Scale (OSSS-3), the Positive Aspects of Caregiving Scale (PACS), and two questions on applying therapeutic communication methods-reminiscence and validation according to Naomi Feil. The Short IQCODE was used for assessing cognitive decline in PLwD. Pearson's and Spearman's correlations, t-tests, Chi-square, ANOVA, and linear multiple regression analyses were used to analyze the data (IBM SPSS 27). Results: The mean age of informal caregivers was 54 ± 12.4 years (81.7% of women) and the mean caregiving duration was 4.8 ± 4.8 years. The mean age of PLwD was 80.5 ± 8.3 years (73.0% of women) and their Short IQCODE mean score was 4.1 ± 1.0. Lower caregiving burden was significantly associated with higher perceived social support (ß = 0.33, p < 0.01), with higher positive caregiving experience (ß = 0.33, p < 0.01), and higher caregiving intensity (ß = 0.24, p < 0.05) among informal caregivers of PLwD. The associations between caregiver burden and applying two therapeutic communication methods were not significant. Conclusions: Implementing psycho-social and educational public health interventions focused on strengthening social support and maintaining positive perceptions of caregiving can help reduce the increased risk of caregiver burden in informal caregivers of older adults with dementia.

[A patient education program for adolescents with anorexia nervosa]. / Un programme d'éducation thérapeutique pour adolescents souffrant d'anorexie mentale.

Patient education program (PEP) aims to help the patient acquire the skills necessary to manage a chronic disease. A multidisciplinary TPE program for adolescents with anorexia nervosa was developed in a daycare hospital setting. This qualitative study, exploring the experience of the caregivers involved in this program, reports the benefits but more so the difficulties linked to the clinical specificities of anorexia nervosa, as well as the numerous requirements, constraints and necessary adjustments linked to this innovative practice.

Factors associated with positive aspects of caregiving experiences among family caregivers of persons living with dementia in Taiwan: A cross-sectional study.

This study examined the associated factors of positive aspects of caregiving experience among family caregivers of persons living with dementia in Taiwan. This cross-sectional correlational study recruited dyads of primary family caregivers of persons living with dementia by convenience sampling from dementia care centers in northern Taiwan from September 9, 2020, to June 20, 2021. A total of 100 dyads who met inclusions criteria agreed to participate in the study. Significant predictors of positive aspects of caregiving experience were scores of dementia behavior disturbance (t=-3.63, p =<.001), a spousal caregiver (t=2.83, p =.006), and the subscale score for satisfaction on the functional social support (t=2.62, p =.01). Our findings suggest prevention and treatment of dementia behavior disturbance for persons living with dementia, improving satisfaction with functional social support, and focusing on non-spousal caregivers could enhance experiences of positive caregiving for family caregivers.

Can Family Carer Groups Help People with Intellectual Disabilities? Applying Focused Ethnography Methods in Community Contexts of Northeastern Thailand

@#Introduction: This study aimed to explore the experience of family carer groups caring for individuals with intellectual disabilities (IDs) in the community contexts of Northeastern Thailand. Materials and Methods: We applied a focused ethnography method with a purposive sampling technique to conduct 35 in-depth interviews (of 14 individuals with IDs, 12 caregiving parents and nine disability group leaders, respectively), which were audio-recorded and transcribed verbatim, then translated from Thai to English. We used content analysis to code the interviews and develop themes. To evaluate the reliability of the coding attempt, we employed data triangulation techniques. Results: Family carer groups seemed to provide benefit to people with IDs and their families by offering support related to information records, the recovery of health and occupational skills development. Conclusion: Family carer groups are an integral part of efforts to support people with IDs. Notably, these groups may facilitate the early formation of long-term parent carer plans, which can better optimise the care and health outcomes of people with IDs in Thailand.

Caregiving for ageing parents: A literature review on the experience of adult children.

BACKGROUND: More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking. AIM: This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research. METHOD: A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The 'SPIDER' eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized. ETHICAL CONSIDERATION: Ethical requirements were respected in every phase of the research process. FINDINGS: Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children's caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development. DISCUSSION: Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed. CONCLUSION: Caring for ageing parents is a continuous quest for giving the best possible care and living up to one's personal values, within the context of the parent's declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with.

Late-Life Preparedness and Its Correlates: A Behavioral Perspective on Preparation.

OBJECTIVES: The present study examined the extent of late-life preparedness and its correlates. In accordance with behavior theories, we postulated that those who have prior experience with caregiving and who perceive such activities as more useful and less risky are more likely to engage in late-life preparatory activities. Because the perceived distance until aging-related life challenges become prevalent may play a role in late-life preparedness, we hypothesized that the effects of the correlates would vary depending on one's subjective remaining life expectation (SRLE). METHODS: Building upon cross-sectional data including 581 German adults from 18 to 93 years, we fitted a hurdle model that separately analyzes the presence and variety of self-reported action engagement to better handle the zero-inflated count measure of preparatory activities. RESULTS: The results revealed that the effects of perceived utility, caregiving experience, and SRLE were significant for both the presence and variety of activities. SRLE was found to moderate the observed effects in the models: The effect of perceived utility on the presence of at least one late-life preparatory activity was larger for those with lower SRLE. In contrast, among those with higher SRLE, having provided care increased the variety of preparatory activities. DISCUSSION: Findings suggest that some of the examined psychosocial factors are similarly associated with both the presence of at least one and the variety of late-life preparatory activities, although the extent of their effects varies depending on one's subjective life stage.

Families' Experiences of End-of-Life Care at Home for Iranian Older Adults: A Qualitative Study.

AIM: While the care of dying elderly patients at home is very complex and ambiguous, it has not been studied in Iran so far. Hence, this study aimed to explore the experience of a representative sample of the Iranian family caregivers from the end-of-life (EOL) care for their elderly relatives. METHODS: The present study was conducted using a qualitative content analysis method. Twelve family caregivers caring for the chronically ill dying elderly were selected using purposeful sampling. The purposive sampling method was applied with an extreme variation in sampling, and data gathering was pursued until data saturation was achieved. Semi-structured interviews were utilized for data collection. Interviews were recorded and instantly transcribed verbatim. Inductive content analysis was used to analyze the data. RESULTS: Four core themes and 13 subthemes emerged from the experiences of family's caregiver as fallow: (1) Committed to care: This is related to encounter with the end of stage disease of the relative, accepting the care role and priority of care, (2) challenges of Care: Caregivers, despite their efforts, provided ineffective care, so they sought to empower themselves and at the same time provide compassionate care, (3) the crisis of care including the complexity of care, fear, and wandering, helplessness, devastating tension, and vacuum of supporting, and (4) conditions after death that family members involved with a sense of loss and Tension control. CONCLUSION: When families had to take care of their elderly patients at home, although their wish to give the best care, they are completely powerless to provide care, and in an atmosphere of the vacuum of supporting, they encounter severe challenges and crisis. It is vital that palliative care centers in the society are arranged to care for EOL elderly with comprehensive insurance services.

Vietnamese-American family caregivers of persons with mental illness: Exploring caregiving experience in cultural context.

While involvement of family caregivers can play an important role in the recovery process of persons with serious mental illness (SMI), family caregivers often endure poor health and mental health issues due to caregiving-related distress. These challenges may be exacerbated for Vietnamese American families due to cultural values (e.g., familism and stigma). This qualitative exploratory study examined how Vietnamese American family caregivers of persons with SMI describe their caregiving experience. Using convenience and snowball sampling, the study recruited 21 participants who took part in two Vietnamese-language focus groups. Key findings of the study addressed three themes: (1) the influence of cultural and religious values on caregiving and mental health; (2) the negative impact of caregiving on caregivers' wellbeing; and (3) the stigma attached to mental illness. The study offers useful insights to assist mental health practitioners in tailoring culturally appropriate and effective services for Vietnamese caregivers.

Factors predicting parents' adaptation when supporting their young adult during a first-episode psychosis.

AIM: The objective is to identify the factors that predict how well parents will adapt when supporting their adult child experiencing a FEP. METHODS: The study was conducted in Quebec city with 58 parents and stepparents who received services from a specialized clinic for treating psychotic illnesses in the early stages. Participants filled in four measuring instruments during a standardized telephone interview. Based on the model being proposed, bivariate analyses and linear regression models were carried out to identify factors that predict how parents will adapt. RESULTS: The analyses allowed us to determine that the factors revealing the severity of the illness and the vulnerability of the young person predict the negative aspects of the parents' experience (R2 = 0.39, P ≤ 0.000), whereas the personal factors related to the parents themselves essentially predict the positive aspects (R2 = 0.51, P ≤ 0.001). The empowerment can be predicted by the combined effect of the positive aspects of the parents' experience and their coping strategies, more specifically those related to family intervention (R2 = 0.60, P ≤ 0.001), whereas the parents' social functioning is linked to their active participation in a family association (R2 = 0.14, P ≤ 0.006). CONCLUSION: This study contributes to how we think of parents' adaptation as it suggests a model that takes the positive aspects into account, associated with the role of support, along with family intervention strategies offered by social workers. Adaptation that is conceptualized using two dependent variables, empowerment and social functioning, allows to identify intervention targets that will be beacons of hope for both the parents and the young people with psychosis, while encouraging early intervention and partnership practices between services and family members.

Qualitative study on the experience and needs of caregivers of patients with hematopoietic stem cell transplantation / 中国实用护理杂志

Objective To investigate the experience and needs of caregivers of patients with hematopoietic stem cell transplantion (HSCT) , in order to provide the basis for targeted intervention. Methods Using qualitative phenomenological research methods, semi- structured interviews of 10 caregivers of HSCT patients were conducted, then the data were summarized and analyzed. Results Four themes were extracted: heavy caregiving burden, adaptation to the caregiving role, professional support needs, humanistic care needs. Conclusions The medical staff should strengthen the health education on HSCT caregivers to improve their ability and their own health concerns, alleviate their psychological pressure, and mobilize social forces to reduce the burden of care.

Caregiving experience study of family caregivers of senile dementia patients in community / 中国实用护理杂志

Objective To get a more comprehensive view of caregiving experiences, and describe the caregiver burden and the positive aspects of caregiving of family caregivers of senile dementia patients in community and to explore the relationship between the caregiver burden and the positive aspects of caregiving. Methods Totally 80 family community-dwelling caregivers of senile dementia patients in community were investigated by Caregiver Burden Inventory (CBI) and Positive Aspects of Caregiving (PAC) questionnaires. Results The score of CBI was 54.73 ± 13.15 and the score of PAC was 28.53 ± 5.37. The score of PAC was negatively correlated with the caregiver burden (r=-0.243, P<0.05). Conclusions The caregiver burden of the family community-dwelling caregivers of dementia patients is high and the positive aspects of caregiving is at middle level. Professional help and support should be provided to the family caregivers of dementia patients by the community health service centers on the premise that the caregiving experience is fully understood. Our aim is to reduce their burden, strengthen the caregiving skills and improve the positive aspects of caregiving simultaneously.

Sociocultural Factors Associated with Caregiver-Psychiatrist Relationship in Taiwan.

OBJECTIVE: Research on sociocultural factors associated caregiver-provider relationship is needed to enhance family involvement in psychiatric care. This study examines from the caregiver's perspective the associations of schizophrenia attributions, stigmatization, and caregiving experiences with caregiver-psychiatrist working relationship in Taiwan. METHODS: This cross-sectional study used a convenience sample of 152 Taiwanese family caregivers of persons diagnosed with schizophrenia, recruited from a grassroots organization, 4 community mental health rehabilitation centers and 2 psychiatric hospitals between July 2012 and March 2013. Multiple linear regression models were used for analysis. RESULTS: Biological attribution was positively associated with perceived family collaboration, and so was environmental attribution with perceived informational support. Internalized stigma was negatively associated with perceived family collaboration. Caregiving rewards were positively related to both perceived family collaboration and informational support, and so was experience of problems with services to perceived family collaboration. CONCLUSION: The examination of family perceptions informs Western psychiatric care providers of the importance of culturally sensitive practices in developing an effective working relationship with family caregivers, particularly in regards to caregivers' casual attributions, impact of stigma, and caregiving experiences.

Coping and caregiving experience of parents of children and adolescents with type-1 diabetes: An exploratory study.

AIMS: To assess the coping strategies and the relationship of coping with subjective burden and positive caregiving consequences as perceived by the caregivers of children and adolescents with Type-1 diabetes. DESIGN: Cross-sectional assessment. SETTING: Outpatient of Endocrinology Department. PARTICIPANTS: Forty-one parents of children and adolescents with Type-1 diabetes. MAIN OUTCOME MEASURE: Ways of coping checklist (WCC), involvement evaluation questionnaire (IEQ) and scale for assessment of positive aspects of caregiving experience (scale for positive aspects of caregiving experience) to study the coping, burden and positive aspects of caregiving respectively. RESULTS: On WCC, the highest score was obtained for seeking social support, followed by planful problem-solving. More frequent use of coping strategies of confrontation and escape-avoidance was associated with significantly higher score on the tension domain of IEQ. Those who more frequently used problem-solving and distancing had significantly higher scores on worrying-urging-I domain of IEQ. supervision domain of IEQ was associated with more frequent use of confrontation, self-control, social support, escape-avoidance and positive reappraisal. More frequent use of distancing and problem-solving were associated with lower caregiving personal gains. More frequent use of problem-solving was associated with higher caregiver satisfaction and lower scores in the domain of self-esteem and social aspects of caring. CONCLUSION: Caregivers of patients with Type-1 diabetes predominantly use adaptive coping strategies. Higher use of certain coping strategies is associated with negative and positive caregiving consequences.

The relationship between dysfunctional family patterns and symptom severity among adolescent patients with eating disorders: A gender-specific approach.

The objective of the authors in this study was to identify factors related to dysfunctional family functioning that may be associated with the severity of symptoms among adolescent patients with an eating disorder (ED) at first-contact care. A total of forty-eight mothers and forty-five fathers of fifty patients with EDs were recruited from an ED unit in Madrid, Spain, between October 2011 and July 2012. Parents completed self-report assessments related to family functioning and psychological wellbeing. Patients went through clinical interviews and completed a self-report questionnaire assessing symptom severity. Compared to fathers, mothers showed higher levels of anxiety and emotional over-involvement and perceived to a greater degree the positive and negative aspects of their experience as caregivers. Regarding the relationship between family functioning and symptom severity, mothers' perceptions of their family relationships as enmeshed and less adaptive, along with anxiety, accounted for 39% of variance in the severity of ED symptoms. Anxiety and symptom accommodation by the fathers accounted for 27% of variance in the symptom severity. Interventions that help parents to cope with their caregiving role should target behavioral, cognitive, and emotional aspects of their functioning and be gender-specific, to improve the outcome of ED in patients.

Sociocultural Factors Associated with Caregiver-Psychiatrist Relationship in Taiwan

OBJECTIVE: Research on sociocultural factors associated caregiver-provider relationship is needed to enhance family involvement in psychiatric care. This study examines from the caregiver's perspective the associations of schizophrenia attributions, stigmatization, and caregiving experiences with caregiver-psychiatrist working relationship in Taiwan. METHODS: This cross-sectional study used a convenience sample of 152 Taiwanese family caregivers of persons diagnosed with schizophrenia, recruited from a grassroots organization, 4 community mental health rehabilitation centers and 2 psychiatric hospitals between July 2012 and March 2013. Multiple linear regression models were used for analysis. RESULTS: Biological attribution was positively associated with perceived family collaboration, and so was environmental attribution with perceived informational support. Internalized stigma was negatively associated with perceived family collaboration. Caregiving rewards were positively related to both perceived family collaboration and informational support, and so was experience of problems with services to perceived family collaboration. CONCLUSION: The examination of family perceptions informs Western psychiatric care providers of the importance of culturally sensitive practices in developing an effective working relationship with family caregivers, particularly in regards to caregivers' casual attributions, impact of stigma, and caregiving experiences.

Caregiving experiences of family members of persons with dementia in south India.

This study reports on the first phase of an investigation aimed at adapting The Savvy Caregiver program, a successful family caregiving curriculum developed in the United States, for application in South India. Thirty family members caring for a person with dementia were interviewed regarding their experiences as caregivers (CGs). Qualitative interviews were conducted with the family member at a geriatric clinic, while other diagnostic procedures were being carried out with the person with dementia. Findings from the study revealed that although family members understood the term CG, none could identify a word for CG in his or her language. There was little understanding of dementia as an illness. Family CGs reported feeling distressed, overwhelmed, and frustrated with caregiving. Caregivers were interested in an educational program, but many had unrealistic expectations for what they wanted to learn. The findings provide directions for adapting The Savvy Caregiver curriculum for Indian family CGs.