The Impact of the Carer Support Needs Assessment Tool (CSNAT) in Community Palliative Care Using a Stepped Wedge Cluster Trial

Family caregiving towards the end-of-life entails considerable emotional, social, financial and physical costs for caregivers. Evidence suggests that good support can improve caregiver psychological outcomes. The primary aim of this study was to investigate the impact of using the carer support needs assessment tool (CSNAT), as an intervention to identify and address support needs in end of life home care, on family caregiver outcomes. A stepped wedge design was used to trial the CSNAT intervention in three bases of Silver Chain Hospice Care in Western Australia, 2012-14. The intervention consisted of at least two visits from nurses (2-3 weeks apart) to identify, review and address caregivers’ needs. The outcome measures for the intervention and control groups were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire (FACQ-PC), caregiver mental and physical health as measured by SF-12v2, and caregiver workload as measured by extent of caregiver assistance with activities of daily living, at baseline and follow up. Total recruitment was 620. There was 45% attrition for each group between baseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89 in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, p=0.018, d=0.348 (95% CI 0.25 to 0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having time for yourself in the day and dealing with your feelings and worries. Despite the challenges at the clinician, organisational and trial levels, the CSNAT intervention led to an improvement in caregiver strain. Effective implementation of an evidence-informed and caregiver-led tool represents a necessary step towards helping palliative care providers better assess and address caregiver needs, ensuring adequate family caregiver support and reduction in caregiver strain.     

The effectiveness of a group psycho-educational program on family caregiver burden of patients with mental disorders

ABSTRACT: BACKGROUND: Brief family intervention may have a positive impact on family caregivers to patients with mental disorders. We aimed to assess the effectiveness of a group psycho-educational program on family caregivers to patients with schizophrenia and mood disorders. METHOD: This randomized controlled trial was performed on 100 caregivers to patients with mental disorders attending Isfahan Behavioral Sciences Research Center, Isfahan, Iran. 100 family caregivers of patients with schizophrenia (n=50) and mood disorders (n=50) were selected and assigned randomly to either a psycho-educational group intervention or routine care in each diagnosis category. The caregivers were followed up for a period of 3 months. Caregiver burden was assessed using the Zarit Burden Interview. RESULTS: The burden decreased significantly in the group that participated in the psycho-educational program. The mean scores of the Zarit caregiver burden scale decreased, while scores in the control group did not change significantly. CONCLUSION: This group intervention program was effective for the Iranian studied population to reduce the caregiver burden in both categories of mental disorder. It may potentially improve the quality of life of both patients and caregivers by improving the standards of care giving.     

Traumatic Brain Injury: Unmet Support Needs of Caregivers and Families in Florida

Sustaining a Traumatic Brain Injury results in familial strain due to the significant impact the injury has upon the role and function of individuals and their families at home and in the community. Using the Stress Process Model of Caregiving, a caregiver needs assessment survey was developed and conducted to better understand the needs of individuals with a Traumatic Brain Injury and their caregivers. Survey results indicate that caregivers experience many challenges including unmet needs in areas of relational supports such as maintaining relationships, long-term emotional and financial support for themselves and the survivor, and the need for a patient or caregiver advocate. Implications for future practice are presented.     

癌症病人护理者医院生物生存状态分析

调查住院癌症病人护理者医院生物生存状态,并对其影响因素进行研究.采用癌症病人护理者医院生物生存状态调查表和病人日常生活能力量表进行问卷调查.结果可见,护理工作使癌症病人护理者医院生物生存状态各维度得分及总分受到了不同程度的影响;作为配偶及父母的护理者生物生存状态较差,病人日常活动能力越差者,护理者的生物生存状态越差,有工作的护理者生物生存状态较高.改善护理者生物生存状态的措施应当针对减轻护理的客观工作量以及向护理者提供更多的信息和应对策略.     

Differences in COPD Patient Care by Primary Family Caregivers: An Age-Based Study

Background

Because Taiwan has the fastest aging rate among developed countries, care for the elderly is becoming more prominent in the country. Primary family caregivers play an important role in patient health and health promotion behavior. Chronic obstructive pulmonary disease (COPD), an age-related disease, is a major public health problem with high morbidity and mortality and can be a long-term burden for family members; however, little attention has been given to the differences in COPD care between elder caregivers and other caregivers. This study aimed to investigate the differences between elder family caregivers and non-elder family caregivers caring for COPD patients in Taiwan, including caring behavior, caregiver response, and caring knowledge.

Methods

This cross-sectional study was conducted between March 2007 and January 2008; 406 primary family caregivers of COPD patients from the thoracic outpatient departments of 6 hospitals in north-central Taiwan were recruited to answer questionnaires measuring COPD characteristics, care behavior, caregiver response, and COPD knowledge. All questionnaires, which addressed caregiver knowledge, care behaviors, and care reactions, were shown to have acceptable validity and reliability, and the data were analyzed using univariate and generalized linear model techniques.

Results

The elder caregivers group had 79 participants, and the non-elder caregivers comprised 327 participants. The COPD-related knowledge scale results were positively correlated with the family caregiver caring behavior scale, suggesting that better COPD-related knowledge among family caregivers may result in improved caring behavior. After adjusting for all possible confounding factors, the elder caregivers had significantly lower COPD-related knowledge than the non-elder caregivers (P<0.001). However, there were no significant differences in the family caregiver caring behavior scale or the caregiver reaction assessment scale between the two groups.

Conclusions

Elder family caregivers require increased education regarding medications and preventive care in COPD patient care.     

Respiratory function of people with amyotrophic lateral sclerosis and caregiver distress level: a correlational study

ABSTRACT: BACKGROUND: Amyotrophic Lateral Sclerosis (ALS) is a rare, fatal neurodegenerative disorder with no curative treatment characterized by degeneration of motor neurons involving a progressive impairment of motor and respiratory functions. Most patients die of ventilator respiratory failure. Caregivers have a great influence on the patient"s quality of life as well as on the quality of care. Home influence of the caregiver on patient care is notable. To date, no study has investigated how psychological issues of caregivers would influence respiratory variables of ALS patients. The study aimed at finding out if there is a relationship between the respiratory function of ALS patients and the level of distress of their caregivers. METHODS: A cross-sectional study was conducted to investigate respiratory issues (PCF and FVC) and the perception of social support of ALS patients. Caregivers filled questionnaires about trait anxiety, depression, and burden of care. Forty ALS patients and their caregivers were recruited. RESULTS: FVC and PCF were positively related to patient perception of social support and negatively related to caregiver anxiety, depression, and burden. DISCUSSION: The distress of ALS caregivers is related to patient respiratory issues. The first and more intuitive explanation emphasizes the impact that the patient's clinical condition has with respect to the caregiver. However, it is possible to hypothesize that if caregivers feel psychologically better, their patient's quality of life improves and that a condition of greater well-being and relaxation could also increase ventilatory capacity. Furthermore, care management could be carried out more easily by caregivers who pay more attention to the patient's respiratory needs. CONCLUSION: Patient perception of social support and caregiver distress are related to respiratory issues in ALS.     

Factors associated with anxiety in family caregivers of children with chronic diseases

Background

Currently, information on factors associated with anxiety in family caregivers of children with chronic diseases is unavailable, indicating a significant gap in the literature. Therefore, this study aims to identify the psychosocial and sociodemographic variables associated with anxiety in family caregivers of children with chronic diseases.

Methods

In 2018, a nonprobability sample of 446 family caregivers was recruited at the National Institute of Health in Mexico City. The participants completed a sociodemographic variable questionnaire, clinical questions, and 18 psychosocial assessment scales, including a scale to assess family caregiver anxiety.

Results

Family caregiver anxiety was correlated with almost all psychosocial variables and one out of three clinical variables but with none of the sociodemographic variables. Furthermore, a multiple linear regression model with five psychosocial variables was established to predict family caregiver anxiety.

Conclusions

Some psychosocial variables have effects on caregiver anxiety that are relevant for interventions. Clinical interventions should be implemented based on the psychosocial variables associated with family caregiver anxiety.

     

How the internet affects patients' experience of cancer: a qualitative study

Objective To explore how men and women with cancer talk about using the internet.Design Qualitative study using semistructured interviews collected by maximum variation sampling.Setting Respondents recruited throughout the United Kingdom during 2001-2.Participants 175 men and women aged 19-83 years, with one of five cancers (prostate, testicular, breast, cervical, or bowel) diagnosed since 1992 and selected to include different stages of treatment and follow up.Results Internet use, either directly or via friend or family, was widespread and reported by patients at all stages of cancer care, from early investigations to follow up after treatment. Patients used the internet to find second opinions, seek support and experiential information from other patients, interpret symptoms, seek information about tests and treatments, help interpret consultations, identify questions for doctors, make anonymous private inquiries, and raise awareness of the cancer. Patients also used it to check their doctors'' advice covertly and to develop an expertise in their cancer. This expertise, reflecting familiarity with computer technology and medical terms, enabled patients to present a new type of “social fitness.”Conclusion Cancer patients used the internet for a wide range of information and support needs, many of which are unlikely to be met through conventional health care. Serious illness often undermines people''s self image as a competent member of society. Cancer patients may use the internet to acquire expertise to display competence in the face of serious illness.     

Effectiveness of an Internet Intervention for Family Caregivers of People with Dementia: Results of a Randomized Controlled Trial

BackgroundThe World Health Organization stresses the importance of accessible and (cost)effective caregiver support, given the expected increase in the number of people with dementia and the detrimental impact on the mental health of family caregivers.MethodsThis study assessed the effectiveness of the Internet intervention ‘Mastery over Dementia’. In a RCT, 251 caregivers, of whom six were lost at baseline, were randomly assigned to two groups. Caregivers in the experimental group (N = 149) were compared to caregivers who received a minimal intervention consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety and Depression Scale: HADS-A). All data were collected via the Internet, and an intention-to-treat analysis was carried out.ResultsAlmost all caregivers were spouses or children (in-law). They were predominantly female and lived with the care recipient in the same household. Age of the caregivers varied from 26 to 87 years. Level of education varied from primary school to university, with almost half of them holding a bachelor’s degree or higher. Regression analyses showed that caregivers in the experimental group showed significantly lower symptoms of depression (p = .034) and anxiety (p = .007) post intervention after adjustment for baseline differences in the primary outcome scores and the functional status of the patients with dementia. Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive symptoms (.26).ConclusionsThe Internet course ‘Mastery over Dementia’ offers an effective treatment for family caregivers of people with dementia reducing symptoms of depression and anxiety. The results of this study justify further development of Internet interventions for family caregivers of people with dementia and suggest that such interventions are promising for keeping support for family caregivers accessible and affordable. The findings are even more promising because future generations of family caregivers will be more familiar with the Internet.

Trial Registration

Dutch Trial Register NTR-2051 www.trialregister.nl/trialreg/admin/rctview.asp?TC=2051     

Zorgzame vrienden en buren als mantelzorgers van oudere volwassenen: een vergelijking met kinderen

This study compared informal care to older, non-coresiding adults provided by friends and neighbours and informal care by children or their partners. Using data from a Dutch representative survey among informal caregivers conducted by CBS and SCP, caregivers of friends (n=133), neighbours (n=108) and parents (n=1,008) were compared with one another to investigate care that friends and neighbours provide to the elderly non-coresiding adults (age 55 and over). Nine percent of those providing care to someone outside the household were friends and nine percent were neighbours. Friends, like children, usually provide long-lasting care, up to four or five years. Friends are similar to neighbours in the number of hours that they provide care. Friends and neighbours experience a lower caregiver burden than children. However, when fulfilling multiple caring tasks, both friends and children, have a greater chance of experiencing higher levels of burden. When there were other caregivers to help, friends experienced a small reduction in burden. Friends and neighbours deserve to be recognized as informal caregivers by policy makers and they deserve attention and support along with family caregivers.     

Formación de cuidadores en un programa de estimulación cognitiva: efectos diferenciales según el tipo de cuidador

Background and objectivesThe ageing population and the increasing dependency associated with it, makes the caregiver a highly relevant figure nowadays. The present study analyzes the socio-demographic differences between family and professional caregivers and their satisfaction and implication in a training program for caregivers.MethodsThe sample consisted of 59 caregivers of older people (37 were family caregivers and 22 professional caregivers) which received and implemented a caregivers training program in their daily care functions. These caregivers were trained in communication skills and cognitive stimulation strategies so they could use them in their daily care activities with the older adults under their care during a period of 3 months. All the participants were assessed with a socio-demographic questionnaire, 2 questionnaires to analyze their satisfaction with their work and the training received and one questionnaire to analyze their ability to detect and react to memory and behavior problems in the older adults they attended.ResultsThe results showed socio-demographic differences, improvements in satisfaction in family caregivers and a greater commitment in their daily work after the treatment in both groups although these effects could be due to different reasons.ConclusionsThe research shows the benefits of carrying out training programs for caregivers as they significantly increase the quality and satisfaction with caregiving. The study also displays the need to adjust such programs taking into account that the socio-demographic characteristics and training needs are different depending on whether de caregiver is a family member or a professional.     

Criticism and Depression among the Caregivers of At-Risk Mental State and First-Episode Psychosis Patients

Expressed emotion (EE), especially criticism, is an important predictor of outcomes for the patient for a wide range of mental health problems. To understand complex links between EE and various relevant variables in early phase psychosis, this study examined criticism, distress of caregivers, other patients’, and caregivers’ variables, and links between criticism and these variables in those with at-risk mental state (ARMS) for psychosis and first-episode psychosis (FEP). The participants were 56 patients (mean age 18.8 ± 4.2 years) with ARMS and their caregivers (49.4 ± 5.8 years) and 43 patients (21.7 ± 5.2 years) with FEP and their caregivers (49.3 ± 7.4 years). We investigated criticisms made by caregivers using the Japanese version of the Family Attitude Scale and caregiver depressive symptoms via the self-report Beck Depression Inventory. We also assessed psychiatric symptoms and functioning of the patients. Approximately one-third of caregivers of patients with ARMS or FEP had depressive symptoms, predominately with mild-to-moderate symptom levels, whereas only a small portion exhibited high criticism. The level of criticism and depression were comparable between ARMS and FEP caregivers. The link between criticism, caregivers’ depression, and patients’ symptoms were observed in FEP but not in ARMS caregivers. These findings imply that the interaction between criticism and caregivers’ and patients’ mental states may develop during or after the onset of established psychosis and interventions for the caregivers should be tailored to the patient’s specific stage of illness. Interventions for FEP caregivers should target their emotional distress and include education about patient’s general symptoms.     

Factors influencing psychological wellbeing of early breast cancer patients

AimThis paper aims to identify factors that influence the psychological wellbeing of patients newly diagnosed with localized breast cancer.BackgroundPsychological wellbeing plays a significant part in the personal experience of patients during their cancer journey. However, despite progress in treatments and outcomes in breast cancer, psychosocial services and emotional support of cancer patients have been given less attention.Materials and methodsData were collected through a retrospective review of 274 charts of women diagnosed with breast cancer between 2012 and 2017 that received care in a single cancer center. Disease specific parameters, social and demographic variables, and Edmonton Symptom Assessment System (ESAS) scores were extracted from the patient charts.ResultsSelf-reported scores of psychological-related symptoms were low (suggesting no or minimal psychological distress) at baseline and remained low in the majority of patients with breast cancer. Pain, depression, anxiety and wellbeing scores of 0–2 were observed in 78.5%, 81.4%, 63.5% and 70.1% of patients, respectively. Higher scores of anxiety at baseline were observed in patients with physical restrictions on the Eastern Cooperative Oncology Group performance status (ECOG PS) (14.9%), current smoking (20.5%) and history of mental illness (19.1%). Increasing scores for pain were observed in older patients during treatment as compared to baseline. Mastectomy was associated with increased scores for wellbeing (worsening wellbeing) as compared to lumpectomy. Of the patients with a history of mental illness (17.3%), 19.1% had more often increased scores for anxiety.ConclusionsThe findings highlight patients that may benefit from additional social and psychological supports at diagnosis and while undergoing treatment.     

Individual and group effects on early caregiver-infant relationships in red-bellied tamarin monkeys

The relationship between changes in caregiver-caregiver and caregiver-infant behaviour was studied during the infants' first month in 10 family groups of red-bellied tamarins, Saguinus labiatus, with twin infants. With infants of a given age, fathers generally spent a higher proportion of time carrying per infant than did mothers, but in most cases these differences were not significant. Mothers and fathers carried significantly more than older siblings did at the beginning and end of the infants' first month. With older infants, caregivers started to rub off infants they were carrying, so that infants started to spend some time off all caregivers. Each caregiver initiated carrying by retrieving an infant from another caregiver, and sometimes retained an infant against a retrieve attempt by another caregiver in order to continue carrying it. Before infants started to spend some time off, time spent carrying by mothers, fathers and older siblings was positively correlated with the percentage of retrieve attempts by other caregivers that they retained against, and, more strongly, with the value of their own number of retains minus the number of retains by other caregivers against them. These results indicate that competition to care for infants has a direct effect on the early development of each caregiver-infant relationship within the family group.     

Psychosocial Moderators the Effects of Transitioning Into Filial Caregiving on Mental and Physical Health

A life-course theoretical perspective guided this study to examine how effects on mental and physical health (depressive symptoms, hostility, global happiness, self-esteem, personal mastery, psychological wellness, self-rated physical health) of transitioning into filial caregiving for a sole surviving parent are moderated by prior relationship quality, filial obligation, race or ethnicity, education, income, employment status, marital status, and parental status. Results from models estimated using longitudinal data from 1,060 adults aged 25 to 65 years at baseline (National Survey of Families and Households, 1987 to 1994) suggested that life-course and contextual factors do contribute to patterning health risks of caregiving, often in different ways for men and women: For example, low income puts daughter caregivers at greater risk for decline in physical health, combining employment with filial caregiving is more problematic for daughters' mental health, and being an unmarried filial caregiver is more problematic for men. Heterogeneity in the experience of filial care needs further attention in future research.     

Does a Family Meetings Intervention Prevent Depression and Anxiety in Family Caregivers of Dementia Patients? A Randomized Trial

Background

Family caregivers of dementia patients are at increased risk of developing depression or anxiety. A multi-component program designed to mobilize support of family networks demonstrated effectiveness in decreasing depressive symptoms in caregivers. However, the impact of an intervention consisting solely of family meetings on depression and anxiety has not yet been evaluated. This study examines the preventive effects of family meetings for primary caregivers of community-dwelling dementia patients.

Methods

A randomized multicenter trial was conducted among 192 primary caregivers of community dwelling dementia patients. Caregivers did not meet the diagnostic criteria for depressive or anxiety disorder at baseline. Participants were randomized to the family meetings intervention (n = 96) or usual care (n = 96) condition. The intervention consisted of two individual sessions and four family meetings which occurred once every 2 to 3 months for a year. Outcome measures after 12 months were the incidence of a clinical depressive or anxiety disorder and change in depressive and anxiety symptoms (primary outcomes), caregiver burden and quality of life (secondary outcomes). Intention-to-treat as well as per protocol analyses were performed.

Results

A substantial number of caregivers (72/192) developed a depressive or anxiety disorder within 12 months. The intervention was not superior to usual care either in reducing the risk of disorder onset (adjusted IRR 0.98; 95% CI 0.69 to 1.38) or in reducing depressive (randomization-by-time interaction coefficient = −1.40; 95% CI −3.91 to 1.10) or anxiety symptoms (randomization-by-time interaction coefficient = −0.55; 95% CI −1.59 to 0.49). The intervention did not reduce caregiver burden or their health related quality of life.

Conclusion

This study did not demonstrate preventive effects of family meetings on the mental health of family caregivers. Further research should determine whether this intervention might be more beneficial if provided in a more concentrated dose, when applied for therapeutic purposes or targeted towards subgroups of caregivers.

Trial Registration

Controlled-Trials.com ISRCTN90163486     

Caregiver burden in Buruli ulcer disease: Evidence from Ghana

BackgroundBuruli ulcer disease (BUD) results in disabilities and deformities in the absence of early medical intervention. The extensive role of caregiving in BUD is widely acknowledged, however, associated caregiver burden is poorly understood. In this paper we assessed the burden which caregivers experience when supporting patients with BUD in Ghana.Method/ principal findingsThis qualitative study was conducted in 3 districts in Ghana between August and October 2019. 13 semi-structured interviews were conducted on caregivers of BUD patients in the local language of Twi. Data was translated into English, coded into broad themes, and direct content analysis approach was used to analyse results. The results show the caregivers face financial, psychological and health issues as a consequence of their caregiving role.Conclusion/ significanceThis study found significant caregiver burden on family members. It also highlighted the psychological burden caregivers experience and the limited knowledge of the disease within endemic communities. Further research is needed to quantify the caregiver burden of BUD at different economic levels in order to better understand the impact of possible caregiver interventions on patient outcomes.     

Patterns of Information-Seeking for Cancer on the Internet: An Analysis of Real World Data

Although traditionally the primary information sources for cancer patients have been the treating medical team, patients and their relatives increasingly turn to the Internet, though this source may be misleading and confusing. We assess Internet searching patterns to understand the information needs of cancer patients and their acquaintances, as well as to discern their underlying psychological states. We screened 232,681 anonymous users who initiated cancer-specific queries on the Yahoo Web search engine over three months, and selected for study users with high levels of interest in this topic. Searches were partitioned by expected survival for the disease being searched. We compared the search patterns of anonymous users and their contacts. Users seeking information on aggressive malignancies exhibited shorter search periods, focusing on disease- and treatment-related information. Users seeking knowledge regarding more indolent tumors searched for longer periods, alternated between different subjects, and demonstrated a high interest in topics such as support groups. Acquaintances searched for longer periods than the proband user when seeking information on aggressive (compared to indolent) cancers. Information needs can be modeled as transitioning between five discrete states, each with a unique signature representing the type of information of interest to the user. Thus, early phases of information-seeking for cancer follow a specific dynamic pattern. Areas of interest are disease dependent and vary between probands and their contacts. These patterns can be used by physicians and medical Web site authors to tailor information to the needs of patients and family members.     

Childhood Environment and Mental Wellbeing at Age 60-64 Years: Prospective Evidence from the MRC National Survey of Health and Development

Background

Mental wellbeing, conceptualised as positive affect, life satisfaction and realisation of needs that contribute to psychological growth, captures more than the absence of mental ill health. Several nations now aim to monitor and improve mental wellbeing. Whilst many studies document associations between adverse childhood experiences and mental disorders in adulthood, possible links between childhood experiences and adult mental wellbeing have so far received less attention.

Methods

Using data from 1976 men and women in the MRC National Survey for Health and Development, we investigated prospective associations between childhood socioeconomic and psychosocial environments and the Warwick Edinburgh Mental Wellbeing Scale, designed to capture both hedonic and eudaimonic facets of wellbeing, at age 60-64.

Results

Whilst there was no evidence that childhood socioeconomic circumstances were related to later wellbeing independently of other childhood experiences, elements of childrearing and parenting, parental health and adjustment, and childhood illness were related. More advantaged socioeconomic position was associated with greater wellbeing but this did not explain the links between these childhood exposures and adult wellbeing, suggesting alternative explanatory pathways should be considered.

Conclusions

Childhood illness and family psychosocial environment are associated with mental wellbeing in early older age, with effects sizes that are larger or comparable to socioeconomic circumstances in adulthood. Initiatives to improve the nation’s mental wellbeing that include programmes targeted to supporting families and children may additionally have benefits that continue into older age.