Caregiver Burden and Quality of Life in Late Stage Parkinson’s Disease

Parkinson’s disease (PD) is a chronic, progressive, neurodegenerative disease involving both motor and non-motor symptoms (NMS). In the late stage of the disease, Hoehn and Yahr (H&Y) stage IV-V, the symptomatology is often severe and patients become increasingly dependent on help in their daily life, resulting in an increased burden for the informal caregivers. To assess the implications of the caregiver burden, caregiver quality of life (QoL) was assessed in 74 informal caregivers to patients in late stage PD, by the Alzheimer’s Patient Partners Life Impact Questionnaire (APPLIQue), which has been found useful also in PD. The majority of caregivers were the spouse/partner. Individual items provided information on which aspects of caregiver burden were the most common, i.e., items: “feel guilty if not there (71% affirmed)”, “the situation wears me down” (65% affirmed) and “always on my mind” (61% affirmed). In simple linear regression analyses, male patient gender (p = 0.007), better cognition (p = 0.004), lower NMS burden (p = 0.012) and not being the partner (p = 0.022) were associated with better caregiver QoL. Multivariable linear regression analyses identified better cognition (p = 0.004) and male patient gender (p = 0.035) as independently associated with better informal caregiver QoL. Identifying and treating NMS as well as recognizing and alleviating caregiver burden seem essential to enhance QoL for both patients and caregivers in late stage PD.

A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort

Informal caregivers are those who provide unpaid care to a relative or friend with a chronic illness, disability or other long-lasting health or care need. Providing informal care in the context of chronic health conditions presents a significant global challenge. Examination of the determinants of informal caregivers’ behaviour, especially in terms of motivations and willingness to provide/receive care, is crucial to understanding the nature of caregiver and care recipient experiences. A large group of international researchers have co-operated to execute the ENTWINE iCohort-a multinational, transdisciplinary, longitudinal study incorporating intensive methods to examine caregiver experiences in the context of chronic health conditions. The aim of ENTWINE-iCohort is to investigate the broad spectrum of factors, i.e., cultural, personal, geographical, relational, psychological, and economic that may affect motivations, willingness to provide or receive care, among diverse groups of informal caregivers and their care recipients, in different countries that have different care systems. Study questionnaires will be disseminated on-line in nine countries: Germany, Greece, Ireland, Italy, Israel, the Netherlands, Poland, Sweden, and the UK. Cross-sectional and longitudinal multivariate analysis, including intensive longitudinal and dyadic data analysis will be applied to examine the relative contribution of the above factors to caregiver or care recipient wellbeing.

Process Evaluation of Lumbar Interbody Fusion Surgeries in Five Dutch Hospitals: A Qualitative Analysis

Background and Objectives: Only limited qualitative research concerning instrumented spine surgeries has been published, despite the increasing number of these surgeries and the evident importance of qualitative analysis of the processes surrounding these complex interventions. Current qualitative research is mainly limited to the experiences, emotions and expectations of patients. Insight into the full process, including experiences from the perspective of informal caregivers and healthcare professionals, remains scarce. Materials and Methods: Data were gathered by means of semi-structured face-to-face interviews. In total, there were 27 participants, including 11 patients, 7 informal caregivers and 9 healthcare professionals. The interview process was audiotaped, and each interview was transcribed verbatim. To systematically analyse the gathered data, software for qualitative analysis (NVivo) was used. After immersion in the raw data of transcripts and field notes, a list of broad categories for organising the data into meaningful clusters for analysis was developed. All interviews were coded by the first author, and 25% was independently assessed by the second author. Results: The results of our study describe several promoting and limiting factors concerning the process of lumbar fusion surgery from the perspective of patients, informal caregivers and healthcare providers. The most frequently mentioned promoting factors were: information and opportunities to ask questions during consultations; multidisciplinary consultations; good communication and guidance during hospitalization; and follow-up appointments. The most frequently mentioned limiting factors were: lack of educational material; lack of guidance and communication prior to, during and after hospitalisation. Conclusion: Overall, participants were satisfied with the current healthcare-process in lumbar fusion surgery. However, we found that lack of educational material and guidance during the process led to insecurity about complaints, surgery and recovery. To improve the process of lumbar interbody fusion and to increase patient satisfaction, healthcare providers should focus on guiding and educating patients and informal caregivers about the pre-operative trajectory, the surgery and the recovery. From the healthcare providers’ perspective, the process could be improved by multidisciplinary consultations and a dedicated spine team in the operation room. Although this study focusses on lumbar fusion surgery, results could be translated to other fields of spine surgery and surgery in general.

Cross-national data on informal caregivers of older people with long-term care needs in the European population: time for a more coordinated and comparable approach

To promote long-term care policies for older adults, accurate mapping of the often invisible and insufficiently recognized role of their informal caregivers is needed. This paper measures the prevalence of informal caregivers in the European population, illustrates current difficulties in gathering unequivocal information on this topic and deals with the scientific and policy implications of the problem. Using the European Health Interview Survey (EHIS), the European Quality of Life Survey (EQLS) and the Study on Health and Ageing in Europe (SHARE), the current difficulties in gathering unequivocal information on this topic are illustrated. In most countries, the share of informal caregivers varies, sometimes markedly, among the three surveys. As for the sex of caregivers, while confirming the well-known higher prevalence of caregivers among women than among men, large variations emerge across the three surveys in most countries in respect of the two sexes. The takeaway message of the paper is that it is urgent to promote international concerted action in gathering comprehensive informal caregiving information and/or exploring in greater depth the different intercultural understandings of informal care itself.

Perceived burden and family functioning among informal caregivers of individuals living with schizophrenia in Tanzania: a cross-sectional study

Background Globally, families play a critical role in providing care and support for persons living with schizophrenia. It is important to identify potentially modifiable factors that influence perceived caregiver burden in order to properly address the needs of caregivers. This is especially relevant in low-resource settings where psychiatric services are scarce and interventions could be most effective if targeted to both the individual living with schizophrenia and their caregiver. This study examines correlates of perceived burden among informal caregivers of individuals with schizophrenia in Tanzania, in particular, the association between burden and caregiver-reported family functioning. Methods This study used baseline data from an individually randomized controlled trial with 65 pairs of individuals with schizophrenia and their informal caregivers in Dar es Salaam and Mbeya, Tanzania. Caregiver burden was measured using the Burden Assessment Scale. Univariable and multivariable regression analyses were performed to determine the relationship between caregiver burden and family functioning and to explore other correlates of burden. Results Sixty-three percent of caregivers reported experiencing high burden as a result of caring for a relative with schizophrenia. Multivariable regression analyses revealed that poor family functioning and the caregiver being employed were associated with high caregiver burden, while higher levels of hopefulness in the caregiver was associated with low caregiver burden. Conclusion Caregivers who were employed, reported poor family functioning, and/or had low levels of hopefulness were more likely to perceive high caregiver burden. Future interventions aiming to reduce caregiver burden may benefit from improving family functioning and nurturing hope among caregivers of individuals living with schizophrenia. Policies and programs should be cognizant of the needs of caregivers that work in addition to providing care for a relative with schizophrenia in order to better support them.

Religious/spiritual coping in informal caregivers of children with cleft lip and/or dysphagic palate

ABSTRACT Objectives: to identify the use of religious/spiritual coping in informal caregivers of children with cleft lip and/or palate, dysphagic, powered exclusively by probe. Methods: descriptive and cross-sectional study, including 30 informal caregivers. For data collection, a Sociodemographic Questionnaire and the Brief Religious/Spiritual Coping Scale were used. For statistical analysis, ANOVA, Student’s t and Spearman’s correlation tests were used, with a significance level of 5%. Results: the use of religious/spiritual coping was high among participants (mean=3.71), with a predominance of positive (mean=3.30) compared to negative (mean=1.88). It was evident that the greater the reported importance of religiosity/spirituality in the participants’ lives, the greater the positive coping (p=0.001). Conclusions: informal caregivers used positive religious/spiritual coping as a way of coping with care demands related to the child’s health condition. These findings point to the importance of including spirituality/religiosity as health indicators.

Musculoskeletal symptoms in formal and informal caregivers of elderly people

ABSTRACT Objective: to evaluate musculoskeletal symptoms in formal and informal caregivers of elderly people, and check association with personal and work-related factors. Methods: this is a cross-sectional study. Instruments for assessment were the International Physical Activity Questionnaire, Self-Reporting Questionnaire-20, Borg’s effort perception scale and Nordic Musculoskeletal Questionnaire. Results: informal caregivers had been working for a longer time (60.2% vs. 41%), had more hours of work (37.4% >12h for day), less time off (85.4% vs. 2.5%) and lack of care guidelines (90.2%). The region with the most musculoskeletal symptoms was the spine and the greater dependence of the elderly, the greater the chances of developing musculoskeletal symptoms (OR= 1.3, 95% CI= 1.1-1.6, p <0.05). Conclusion: personal and work-related factors were more prevalent in informal group and the elderly person’s dependence interferes with the increase in musculoskeletal symptoms of caregivers.

Mejora de la calidad de vida en cuidadores informales de personas dependientes mediante talleres educacionales

Introduction: The ageing of the population is associated with an increase in the number of dependent people, with an estimate of 15% living with a disability. The provision of care to family members entails an added responsibility associated with care-related problems, which can have a negative impact on caregivers. Therefore, we propose to design and evaluate a caregiving programme based on caregiver education, measuring knowledge, pain perception, emotional burden and health-related quality of life. Objective: The main objective is to improve the quality of life of informal caregivers through training interventions, in order to decrease the disability caused by caregiving tasks.Method: 99 caregivers belonging to the Aljarafe-Northern Seville Primary Care Health District participated, divided into control and intervention groups. We designed two educational workshops on care programmes for informal caregivers. They completed a knowledge questionnaire, and different validated scales related to pain, health states and quality of life.Results: Most of the caregivers presented back problems, for which they received pharmaceutical treatment. The implemented intervention was associated with a decrease in pain during basic activities of daily living, care and rest, as well as a reduction in strain index in both groups.Conclusions: Intervention programmes for informal carers of dependent patients are effective in improving the state of health and quality of life of this group, and their implementation should therefore be encouraged in primary care. Introducción: El envejecimiento de la población está asociado a un incremento de personas dependientes, estimándose que el 15% vive con alguna discapacidad. La prestación de cuidados a familiares supone una responsabilidad añadida asociada a problemas relacionados con el cuidado, que pueden repercutir negativamente en los cuidadores. Por ello, planteamos diseñar y evaluar un programa de cuidados, basado en la educación de los cuidadores, midiendo los conocimientos, la percepción del dolor, la carga emocional y la calidad de vida relacionada con la salud. Objetivo: El objetivo principal es mejorar la calidad de vida de los cuidadores informales mediante intervenciones formativas, con el fin de disminuir la incapacidad causada por las tareas del cuidado.Método: Participaron 99 cuidadores pertenecientes al Distrito Sanitario Aljarafe-Sevilla Norte de Atención Primaria, divididos en grupo control e intervención. Diseñamos dos talleres educacionales sobre programas de atención a cuidadores informales. Cumplimentaron un cuestionario de conocimientos, y diferentes escalas validadas relacionadas con el dolor, los estados de salud y la calidad de vida.Resultados: La mayor parte de los cuidadores presentaban problemas de espalda tomando medicación para ello. La intervención implementada se asoció a un descenso del dolor durante actividades básicas de la vida diaria, los cuidados y el descanso, y disminución del índice de esfuerzo en ambos grupos.Conclusiones: Los programas de intervención en cuidadores informales de pacientes dependientes resultan eficaces para mejorar el estado de salud y la calidad de vida de este colectivo por lo que se debe fomentar su realización desde la Atención Primaria.

Sleep Quality Among Informal Caregivers During the COVID-19 Pandemic: A Cross-Sectional Study

Sleep is an integral component of health. The impact of the COVID-19 pandemic on sleep quality among informal caregivers, individuals who provide unpaid care or assistance to family members or friends, assisting older adults is not well understood. Therefore, informal caregivers in the United States providing care for individuals aged 50+ were recruited via Amazon’s Mechanical Turk, an online platform for enrolling study participants into social and behavioral science research, to complete an online survey. The sample of informal caregivers ( n = 835) was 69% male and 55% non-Hispanic. Multivariable linear regression models were constructed to assess the associations between sleep disturbance scores (SDS) and sleep-related impairment scores (SIS) and caregiving-related measures (hours caregiving/week, length of time spent caregiving, and caregiver burden), demographics, and region of the United States. The analysis determined that Black (β = 2.6, 95% CI [−4.3, −0.9]) and Asian informal caregivers (β = −1.8, 95% CI [−3.4, −0.3]) had lower mean SIS than White caregivers, the referent group. In addition, increasing caregiver burden was associated with increased SDS (β = 0.8, 95% CI [0.6, 1.0]) and SIS (β = 1.3, 95% CI [0.7, 1.6]). In conclusion, higher caregiver burden was associated with higher SIS and SDS, suggesting that informal caregivers' sleep should be assessed, and when needed interventions should be offered.