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1.
BMC Health Serv Res ; 23(1): 818, 2023 Jul 31.
Article in English | MEDLINE | ID: mdl-37525209

ABSTRACT

BACKGROUND: Depression is common among people with tuberculosis (TB). The condition is typically unrecognised or untreated despite available and effective treatments in most low- and middle-income countries. TB services in these countries are relatively well established, offering a potential opportunity to deliver integrated depression screening and care. However, there is limited evidence on how such integration could be achieved. This study aimed to understand the barriers and facilitators to integrate depression care in TB services. METHODS: We conducted nine workshops with 76 study participants, including people with TB, their carers, and health service providers in Bangladesh, India, and Pakistan, seeking views on integrating depression care into TB clinics. We used a deductive thematic approach to analyse the translated transcripts of audio recordings, contemporaneous notes made during workshops for Bangladesh and India and workshop reports for Pakistan. Using the SURE (Supporting the Use of Research Evidence) thematic framework, we extracted and categorised barriers and facilitators into various domains. RESULTS: Reported barriers to integrating depression care in TB services included lack of knowledge about depression amongst patients and the staff, financial burden, and associated stigma for people with TB and their carers. Government buy-in and understanding of how to identify and screen for depression screening were potential facilitators reported. Additionally, breaking through mental health stigma and providing the additional resources required to deliver this service (human resources and consultation time) were essential for integrating depression and TB care. CONCLUSIONS: Depression is a common condition found among people with TB, requiring early identification among people with TB. Integrating depression care into Tb services by health workers requires the availability of political support and the provision of resources.


Subject(s)
Delivery of Health Care, Integrated , Depression , Health Services Accessibility , Tuberculosis , Adolescent , Adult , Aged , Female , Humans , Male , Middle Aged , Young Adult , Bangladesh/epidemiology , Delivery of Health Care, Integrated/organization & administration , Depression/diagnosis , Depression/epidemiology , Depression/therapy , Health Personnel/psychology , Health Personnel/statistics & numerical data , India/epidemiology , Pakistan/epidemiology , Qualitative Research , Tuberculosis/psychology , Tuberculosis/therapy , Health Knowledge, Attitudes, Practice , Social Stigma , Financial Stress , Caregivers/psychology , Caregivers/statistics & numerical data , Patients/psychology , Patients/statistics & numerical data
2.
Pan Afr Med J ; 39: 163, 2021.
Article in English | MEDLINE | ID: mdl-34548892

ABSTRACT

INTRODUCTION: Sickle Cell Disease (SCD) is the leading genetic disease in sub-Saharan Africa and therefore remains a global public health threat. Use of complementary and alternative medicines (CAM) most especially herbal medicine (HM) in chronic diseases such as sickle cell disease has widely been reported in Africa where advanced technologies are greatly lacking. Despite a large presence of the sickle cell disease in Uganda, the extent to which herbal medicines are used in management of children with sickle cell disease has not been documented. This study purposed to determine the prevalence of herbal medicine (HM) use and associated factors among caregivers of children with SCD at Mulago National Referral Hospital. METHODS: a total of 384 child caretakers were interviewed in a descriptive cross-sectional quantitative study conducted at the Mulago Sickle cell clinic in March 2019. Enrolment was done consecutively and a structured interviewer administered questionnaire administered to collect data from the caretakers which was managed using SPSS version 23. Multivariate logistic regression was used to identify the factors associated with herbal medicine (HM) use. Factors with p-value <0.05 were regarded significant. RESULTS: the rate of herbal use was 77.6% (298 of 384 caregivers). At multivariate analysis, the odds of a caregiver who agreed that; HM cures symptoms faster than conventional medicine (CM) were 3 times those who disagreed with this statement (AOR =3.439, 95% CI: 1.447 - 8.176). The odds that a caregiver who agreed that HM has fewer side effects than CM were almost 4 times those that disagreed with this statement (AOR = 3.528, 95% CI: 1.917 -6.494). The odds that a caregiver who agreed that marketing HM through televisions adverts encourages HM use were 4 times those who disagreed with this statement (AOR = 4.185, 95% CI: 2.036 -8.603). CONCLUSION: this study reports a high prevalence of HM use among caregivers of children with SCD at Mulago Hospital, in Uganda. The practice is significantly influenced by caretakers´ perception that HM cures symptoms faster than CM, has fewer side effects and that telemarketing has greatly facilitated its use over CM. More effort is therefore needed to encourage clinic attendances and CM use and limit the unfounded TV adverts on HM. There is also need for studies to identify the common HM used so that their efficacy and safety are well studied.


Subject(s)
Anemia, Sickle Cell/drug therapy , Caregivers/statistics & numerical data , Phytotherapy/statistics & numerical data , Plant Preparations/administration & dosage , Adolescent , Adult , Aged , Child , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Prevalence , Uganda , Young Adult
3.
PLoS One ; 16(6): e0252663, 2021.
Article in English | MEDLINE | ID: mdl-34097710

ABSTRACT

INTRODUCTION: Neonatal deaths represent around half the deaths of children less than five-years old in Cambodia. The process from live birth to neonatal death has not been well described. This study aimed to identify problems in health care service which hamper the reduction of preventable neonatal deaths in rural Cambodia. METHODS: This study adopted a method of qualitative case study design using narrative data from the verbal autopsy standard. Eighty and forty villages were randomly selected from Kampong Cham and Svay Rieng provinces, respectively. All households in the target villages were visited between January and February 2017. Family caregivers were asked to describe their experiences on births and neonatal deaths between 2015 and 2016. Information on the process from birth to death was extracted with open coding, categorized, and summarized into several groups which represent potential problems in health services. RESULTS: Among a total of 4,142 children born in 2015 and 2016, 35 neonatal deaths were identified. Of these deaths, 74% occurred within one week of birth, and 57% were due to low-birth weight. Narrative data showed that three factors should be improved, 1) the unavailability of a health-care professional, 2) barriers in the referral system, and 3) lack of knowledge and skill to manage major causes of neonatal deaths. CONCLUSION: The current health system has limitations to achieve further reduction of neonatal deaths in rural Cambodia. The mere deployment of midwives at fixed service points such as health centers could not solve the problems occurring in rural communities. Community engagement revisiting the principle of primary health care, as well as health system transformation, is the key to the solution and potential breakthrough for the future.


Subject(s)
Caregivers/statistics & numerical data , Infant Mortality , Infant, Newborn, Diseases/mortality , Perinatal Death/prevention & control , Rural Population/statistics & numerical data , Adult , Cambodia , Female , Humans , Infant , Infant, Newborn , Infant, Newborn, Diseases/diagnosis , Male , Maternal Age , Middle Aged , Midwifery/statistics & numerical data , Rural Health/standards , Rural Health/statistics & numerical data , Young Adult
4.
Public Health ; 194: 121-126, 2021 May.
Article in English | MEDLINE | ID: mdl-33882405

ABSTRACT

OBJECTIVES: There is growing interest in arts practices in relation to public health, including their potential to support psychological well-being. This study sought to understand the impact of Hear and Now, an intergenerational arts and health project, upon indicators of psychological well-being among all groups involved: young people, older people with a diagnosis of dementia and their carers and partners and the project's artistic team. STUDY DESIGN: This was a descriptive exploratory qualitative study, using focus groups and observation as data collection methods. METHODS: Study participants were 65 people representing the four groups participating in the 2019 Hear and Now project: older adults living with a diagnosis of dementia, their carers and partners, young people and a team of professional artists and facilitators. Of these, 27 participated in one or more of seven focus groups. Participants were asked about their previous engagement with music and dance, thoughts about the intergenerational element of the project and other aspects of their experiences that related to indicators of well-being. In order to investigate the project's impact on participants' well-being, Seligman's PERMA model was adopted, which sets out five indicators of well-being: positive emotions, engagement, positive relationships, meaning and achievement/accomplishment. RESULTS: Experiences relating to all five areas of the PERMA model were evidenced by all groups in relation to their involvement in the project. Additional health benefits were also cited by some, as well as enhanced perceptions of other members of the project cohort. CONCLUSIONS: The findings support existing literature that intergenerational and arts activities can be beneficial for individuals' psychological health. Experiences relating to all five dimensions of the PERMA model of well-being (positive emotion, engagement, positive relationships, meaning, achievement/accomplishment) were cited by the four participant groups, which suggests examining the impact of such projects on all project collaborators is worthy of further study. Understanding the impact these projects can have on the various groups involved will enable artistic and healthcare communities to better collaborate and value each other's practices.


Subject(s)
Art Therapy/methods , Caregivers/psychology , Dementia/therapy , Intergenerational Relations , Mental Health/statistics & numerical data , Adolescent , Aged , Aged, 80 and over , Caregivers/statistics & numerical data , Child , Dementia/psychology , Female , Focus Groups , Humans , Male , Middle Aged , Treatment Outcome
5.
Holist Nurs Pract ; 35(2): 81-91, 2021.
Article in English | MEDLINE | ID: mdl-33555721

ABSTRACT

The support group process effect on caregiver burden on family members of dementia patients based on Watson's theory of human caring was that a significant difference was found between caregivers and control groups. Qualitatively, the support group process could reduce caregiver burden and improve coping skills.


Subject(s)
Caregivers/psychology , Empathy , Group Processes , Social Support , Aged , Caregivers/education , Caregivers/statistics & numerical data , Female , Humans , Male , Middle Aged
6.
J Music Ther ; 58(2): 201-240, 2021 Jun 14.
Article in English | MEDLINE | ID: mdl-33448286

ABSTRACT

Premature infants and their parents experience significant stress during the perinatal period. Music therapy (MT) may support maternal-infant bonding during this critical period, but studies measuring impact across the infant's first year are lacking. This nonrandomized feasibility study used quantitative and qualitative methods within a critical realist perspective to evaluate the feasibility, acceptability, and suitability of the treatment arm of the Longitudinal Study of music Therapy's Effectiveness for Premature infants and their caregivers (LongSTEP) (NCT03564184) trial with a Norwegian cohort (N = 3). Families were offered MT emphasizing parent-led infant-directed singing during neonatal intensive care unit (NICU) hospitalization and across 3 months post-discharge. We used inductive thematic analysis of semi-structured interviews with parents at discharge from NICU and at 3 months and analyzed quantitative variables descriptively. Findings indicate that: (1) parents of premature infants are willing to participate in MT research where parental voice is a main means of musical interaction; (2) parents are generally willing to engage in MT in NICU and post-discharge phases, finding it particularly interesting to note infant responsiveness and interaction over time; (3) parents seek information about the aims and specific processes involved in MT; (4) the selected self-reports are reasonable to complete; and (5) the Postpartum Bonding Questionnaire appears to be a suitable measure of impaired maternal-infant bonding. Parents reported that they were able to transfer resources honed during MT to parent-infant interactions outside MT and recognized parental voice as a central means of building relation with their infants. Results inform the implementation of a subsequent multinational trial that will address an important gap in knowledge.


Subject(s)
Caregivers/psychology , Infant, Premature/psychology , Music Therapy , Stress, Psychological/therapy , Adult , Caregivers/statistics & numerical data , Feasibility Studies , Female , Humans , Infant , Infant, Newborn , Longitudinal Studies , Male , Norway , Treatment Outcome , Young Adult
7.
J Alzheimers Dis ; 79(3): 1345-1367, 2021.
Article in English | MEDLINE | ID: mdl-33427746

ABSTRACT

BACKGROUND: Mindfulness is the practice of awareness and living in the present moment without judgment. Mindfulness-based interventions may improve dementia-related outcomes. Before initiating interventions, it would be beneficial to measure baseline mindfulness to understand targets for therapy and its influence on dementia outcomes. OBJECTIVE: This cross-sectional study examined patient and caregiver mindfulness with patient and caregiver rating scales and patient cognitive performance and determined whether dyadic pairing of mindfulness influences patient outcomes. METHODS: Individuals (N = 291) underwent comprehensive evaluations, with baseline mindfulness assessed using the 15-item Applied Mindfulness Process Scale (AMPS). Correlation, regression, and mediation models tested relationships between patient and caregiver mindfulness and outcomes. RESULTS: Patients had a mean AMPS score of 38.0±11.9 and caregivers had a mean AMPS score of 38.9±11.5. Patient mindfulness correlated with activities of daily living, behavior and mood, health-related quality of life, subjective cognitive complaints, and performance on episodic memory and attention tasks. Caregiver mindfulness correlated with preparedness, care confidence, depression, and better patient cognitive performance. Patients in dyads with higher mindfulness had better cognitive performance, less subjective complaints, and higher health-related quality of life (all p-values<0.001). Mindfulness effects on cognition were mediated by physical activity, social engagement, frailty, and vascular risk factors. CONCLUSION: Higher baseline mindfulness was associated with better patient and caregiver outcomes, particularly when both patients and caregivers had high baseline mindfulness. Understanding the baseline influence of mindfulness on the completion of rating scales and neuropsychological test performance can help develop targeted interventions to improve well-being in patients and their caregivers.


Subject(s)
Caregivers/psychology , Dementia/therapy , Mindfulness , Adult , Aged , Aged, 80 and over , Caregivers/statistics & numerical data , Cross-Sectional Studies , Dementia/psychology , Female , Humans , Male , Mental Status and Dementia Tests , Middle Aged , Mindfulness/methods , Mindfulness/statistics & numerical data , Resilience, Psychological , Retrospective Studies , Risk Factors , Surveys and Questionnaires , Treatment Outcome , Young Adult
9.
Palliat Support Care ; 18(6): 644-647, 2020 12.
Article in English | MEDLINE | ID: mdl-33349280

ABSTRACT

OBJECTIVE: Insomnia is a common, distressing, and impairing psychological outcome experienced by informal caregivers (ICs) of patients with cancer. Cognitive behavioral therapy for insomnia (CBT-I) and acupuncture both have known benefits for patients with cancer, but such benefits have yet to be evaluated among ICs. The purpose of the present study was to evaluate the feasibility, acceptability and preliminary effects of CBT-I and acupuncture among ICs with moderate or greater levels of insomnia. METHOD: Participants were randomized to eight sessions of CBT-I or ten sessions of acupuncture. RESULTS: Results highlighted challenges of identifying interested and eligible ICs and the impact of perception of intervention on retention and likely ultimately outcome. SIGNIFICANCE OF THE RESULTS: Findings suggest preliminary support for non-pharmacological interventions to treat insomnia in ICs and emphasize the importance of matching treatment modality to the preferences and needs of ICs.


Subject(s)
Acupuncture Therapy/standards , Caregivers/psychology , Cognitive Behavioral Therapy/standards , Sleep Initiation and Maintenance Disorders/therapy , Acupuncture Therapy/statistics & numerical data , Adult , Caregivers/statistics & numerical data , Cognitive Behavioral Therapy/statistics & numerical data , Feasibility Studies , Humans , Male , Middle Aged , Neoplasms/nursing , Neoplasms/psychology , Sleep Initiation and Maintenance Disorders/psychology , Treatment Outcome
10.
Article in English | MEDLINE | ID: mdl-33253410

ABSTRACT

Resilience and stress are important factors in the caregiving experience, but research has yet to examine their association among American Indian (AI) caregivers. This study examines resilience and stress in a group of Hopi female caregivers. Data came from the Hopi Adult Caregiver Survey (2017), which conducted interviews with 44 Hopi women who were providing care without remuneration to an adult family member. Measures included the abbreviated Connor-Davidson Resilience Scale (CD-RISC-10), the Perceived Stress Scale (PSS-10), and questions about caregiver characteristics, care recipient characteristics, social support/ community support, and cultural factors. Stress and resilience were looked at above the median (higher stress or higher resilience) and below the median (lower stress or lower resilience). Caregivers who reported relatively lower resilience were more likely to report that they lived separately from their care recipients and that all Hopis are expected to be caregivers. Caregivers who reported relatively higher stress reported a higher total number of caregiver difficulties, a poorer self-perception of their own health, use of a traditional healer in the past 5 years, and that females are expected to be caregivers. A regression analysis adjusting for age, education, and employment status indicated that higher resilience among the caregivers was significantly associated with lower stress. In light of these findings, programs working with AI caregivers may wish to explore whether supporting the resilience of these caregivers is a means towards limiting their stress.


Subject(s)
American Indian or Alaska Native/psychology , Caregivers/psychology , Resilience, Psychological , Stress, Psychological/epidemiology , Stress, Psychological/psychology , Caregivers/statistics & numerical data , Family/psychology , Female , Humans , Interviews as Topic , Middle Aged , Self Concept , American Indian or Alaska Native/statistics & numerical data
11.
J Hosp Palliat Nurs ; 22(6): 532-551, 2020 12.
Article in English | MEDLINE | ID: mdl-33044420

ABSTRACT

This study aimed to compare perceptions of spiritual care among patients with life-threatening cancer, their primary family caregivers, and hospice/palliative care nurses.Data were collected using both structured and unstructured approaches. Structured questionnaire data were examined using statistical analysis methods, and unstructured data were examined using content analysis to compare the 3 participant groups. The questionnaire revealed that among all 3 groups, spiritual care was commonly perceived to relate to "having the opportunity for internal reflection," "finding meaning," "encouraging hope," and "listening to and being with patients." Content analysis of the unstructured data revealed 5 themes: "Caring with sincerity," "Strengthening spiritual resources," "Alleviating physical pain and discomfort" (among patients and primary family caregivers only), "Improving spiritual care service," and "Multifaceted cooperation" (among hospice/palliative care nurses only). Our findings suggest that for patients with life-threatening illnesses such as terminal cancer, spiritual care should not be limited to religious practice but should also satisfy inner existential needs, for example, by encouraging hope, providing empathy, and helping patients find meaning in their circumstances.


Subject(s)
Caregivers/psychology , Perception , Spiritual Therapies/standards , Terminal Care/standards , Adult , Caregivers/statistics & numerical data , Female , Hospice and Palliative Care Nursing/standards , Hospice and Palliative Care Nursing/statistics & numerical data , Humans , Male , Middle Aged , Neoplasms/complications , Neoplasms/psychology , Qualitative Research , Republic of Korea , Spiritual Therapies/psychology , Surveys and Questionnaires , Terminal Care/methods , Terminal Care/psychology
12.
Child Abuse Negl ; 109: 104764, 2020 11.
Article in English | MEDLINE | ID: mdl-33038722

ABSTRACT

BACKGROUND: Research on child maltreatment is imperative to inform evidence-based prevention and intervention efforts. Nonetheless, researchers continue to face barriers due to the perceived sensitivity and possibility of harm when asking about these experiences. While studies have started to explore reactions to participating in research on sensitive topics, there are notable limitations and fewer have focused on child maltreatment. OBJECTIVE: The objective of this study was to better understand adult respondents' identification of, and reactions to, potentially upsetting questions in the context of a well-being and experiences survey, with a focus on child maltreatment. METHODS: Data were from the first wave of the Well-Being and Experiences Study in Manitoba, Canada: a computerized self-reported community-based survey of adolescents and their parents/caregivers administered individually at a research facility. The current study focused on parents/caregivers' responses (N = 1000). The study utilized a mixed methods approach with descriptive statistics and qualitative thematic analyses of open-ended responses of their perceptions of upsetting questions. RESULTS: Overall, few respondents (15.1 %) identified any questions as upsetting. Ten themes emerged in respondents' recall of upsetting questions, including maltreatment and other themes often perceived as less sensitive. Only 4% identified maltreatment-related questions as upsetting. Among those who identified any questions or maltreatment-specific questions as upsetting, most felt they were important to ask and should not be removed (92.7 %-97.5 %). These findings suggest that retrospective survey questions about experiences of child maltreatment involving adult samples are not associated with major upset and should be included in future health and social surveys.


Subject(s)
Caregivers/psychology , Child Abuse/psychology , Parents/psychology , Adolescent , Adult , Caregivers/statistics & numerical data , Child Abuse/statistics & numerical data , Emotions , Female , Humans , Income , Male , Manitoba , Mental Healing/psychology , Middle Aged , Prevalence , Retrospective Studies , Surveys and Questionnaires
13.
Cochrane Database Syst Rev ; 9: CD012780, 2020 09 30.
Article in English | MEDLINE | ID: mdl-32996586

ABSTRACT

BACKGROUND: Serious illness is often characterised by physical/psychological problems, family support needs, and high healthcare resource use. Hospital-based specialist palliative care (HSPC) has developed to assist in better meeting the needs of patients and their families and potentially reducing hospital care expenditure. There is a need for clarity on the effectiveness and optimal models of HSPC, given that most people still die in hospital and also to allocate scarce resources judiciously. OBJECTIVES: To assess the effectiveness and cost-effectiveness of HSPC compared to usual care for adults with advanced illness (hereafter patients) and their unpaid caregivers/families. SEARCH METHODS: We searched CENTRAL, CDSR, DARE and HTA database via the Cochrane Library; MEDLINE; Embase; CINAHL; PsycINFO; CareSearch; National Health Service Economic Evaluation Database (NHS EED) and two trial registers to August 2019, together with checking of reference lists and relevant systematic reviews, citation searching and contact with experts to identify additional studies. SELECTION CRITERIA: We included randomised controlled trials (RCTs) evaluating the impact of HSPC on outcomes for patients or their unpaid caregivers/families, or both. HSPC was defined as specialist palliative care delivered by a palliative care team that is based in a hospital providing holistic care, co-ordination by a multidisciplinary team, and collaboration between HSPC providers and generalists. HSPC was provided to patients while they were admitted as inpatients to acute care hospitals, outpatients or patients receiving care from hospital outreach teams at home. The comparator was usual care, defined as inpatient or outpatient hospital care without specialist palliative care input at the point of entry into the study, community care or hospice care provided outside of the hospital setting. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures expected by Cochrane. We assessed risk of bias and extracted data. To account for use of different scales across studies, we calculated standardised mean differences (SMDs) with 95% confidence intervals (CIs) for continuous data. We used an inverse variance random-effects model. For binary data, we calculated odds ratio (ORs) with 95% CIs. We assessed the evidence using GRADE and created a 'Summary of findings' table. Our primary outcomes were patient health-related quality of life (HRQoL) and symptom burden (a collection of two or more symptoms). Key secondary outcomes were pain, depression, satisfaction with care, achieving preferred place of death, mortality/survival, unpaid caregiver burden, and cost-effectiveness. Qualitative data was analysed where available. MAIN RESULTS: We identified 42 RCTs involving 7779 participants (6678 patients and 1101 caregivers/family members). Twenty-one studies were with cancer populations, 14 were with non-cancer populations (of which six were with heart failure patients), and seven with mixed cancer and non-cancer populations (mixed diagnoses). HSPC was offered in different ways and included the following models: ward-based, inpatient consult, outpatient, hospital-at-home or hospital outreach, and service provision across multiple settings which included hospital. For our main analyses, we pooled data from studies reporting adjusted endpoint values. Forty studies had a high risk of bias in at least one domain. Compared with usual care, HSPC improved patient HRQoL with a small effect size of 0.26 SMD over usual care (95% CI 0.15 to 0.37; I2 = 3%, 10 studies, 1344 participants, low-quality evidence, higher scores indicate better patient HRQoL). HSPC also improved other person-centred outcomes. It reduced patient symptom burden with a small effect size of -0.26 SMD over usual care (95% CI -0.41 to -0.12; I2 = 0%, 6 studies, 761 participants, very low-quality evidence, lower scores indicate lower symptom burden). HSPC improved patient satisfaction with care with a small effect size of 0.36 SMD over usual care (95% CI 0.41 to 0.57; I2 = 0%, 2 studies, 337 participants, low-quality evidence, higher scores indicate better patient satisfaction with care). Using home death as a proxy measure for achieving patient's preferred place of death, patients were more likely to die at home with HSPC compared to usual care (OR 1.63, 95% CI 1.23 to 2.16; I2 = 0%, 7 studies, 861 participants, low-quality evidence). Data on pain (4 studies, 525 participants) showed no evidence of a difference between HSPC and usual care (SMD -0.16, 95% CI -0.33 to 0.01; I2 = 0%, very low-quality evidence). Eight studies (N = 1252 participants) reported on adverse events and very low-quality evidence did not demonstrate an effect of HSPC on serious harms. Two studies (170 participants) presented data on caregiver burden and both found no evidence of effect of HSPC (very low-quality evidence). We included 13 economic studies (2103 participants). Overall, the evidence on cost-effectiveness of HSPC compared to usual care was inconsistent among the four full economic studies. Other studies that used only partial economic analysis and those that presented more limited resource use and cost information also had inconsistent results (very low-quality evidence). Quality of the evidence The quality of the evidence assessed using GRADE was very low to low, downgraded due to a high risk of bias, inconsistency and imprecision. AUTHORS' CONCLUSIONS: Very low- to low-quality evidence suggests that when compared to usual care, HSPC may offer small benefits for several person-centred outcomes including patient HRQoL, symptom burden and patient satisfaction with care, while also increasing the chances of patients dying in their preferred place (measured by home death). While we found no evidence that HSPC causes serious harms, the evidence was insufficient to draw strong conclusions. Although these are only small effect sizes, they may be clinically relevant at an advanced stage of disease with limited prognosis, and are person-centred outcomes important to many patients and families. More well conducted studies are needed to study populations with non-malignant diseases and mixed diagnoses, ward-based models of HSPC, 24 hours access (out-of-hours care) as part of HSPC, pain, achieving patient preferred place of care, patient satisfaction with care, caregiver outcomes (satisfaction with care, burden, depression, anxiety, grief, quality of life), and cost-effectiveness of HSPC. In addition, research is needed to provide validated person-centred outcomes to be used across studies and populations.


Subject(s)
Caregivers/statistics & numerical data , Home Care Services, Hospital-Based/economics , Palliative Care/economics , Palliative Care/methods , Terminal Care/economics , Terminal Care/methods , Ambulatory Care/economics , Bias , Caregivers/psychology , Cost-Benefit Analysis , Family , Heart Failure/mortality , Heart Failure/therapy , Hospitalization/economics , Humans , Neoplasms/mortality , Neoplasms/therapy , Pain Management/statistics & numerical data , Patient Satisfaction , Quality of Life , Randomized Controlled Trials as Topic , Symptom Assessment/statistics & numerical data
14.
Parkinsonism Relat Disord ; 78: 61-65, 2020 09.
Article in English | MEDLINE | ID: mdl-32736164

ABSTRACT

INTRODUCTION: Approximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population. METHODS: Secondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale. RESULTS: Of 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms. CONCLUSION: Findings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.


Subject(s)
Caregivers/statistics & numerical data , Outcome Assessment, Health Care/statistics & numerical data , Palliative Care/statistics & numerical data , Parkinsonian Disorders/nursing , Parkinsonian Disorders/physiopathology , Parkinsonian Disorders/psychology , Aged , Aged, 80 and over , Cross-Sectional Studies , Female , Humans , Income/statistics & numerical data , Male , Middle Aged , Parkinson Disease/nursing , Parkinson Disease/physiopathology , Parkinson Disease/psychology , Psychological Distress , Quality of Life , Severity of Illness Index , Spirituality
15.
BMC Palliat Care ; 19(1): 92, 2020 Jun 29.
Article in English | MEDLINE | ID: mdl-32600428

ABSTRACT

BACKGROUND: Palliative care should be holistic, but spiritual issues are often overlooked. General practitioners and nurses working together in PaTz-groups (palliative home care groups) consider spiritual issues in palliative care to be relevant, but experience barriers in addressing spiritual issues and finding spiritual caregivers. This study evaluates the feasibility and perceived added value of a listening consultation service by spiritual caregivers in primary palliative care. METHODS: From December 2018 until September 2019, we piloted a listening consultation service in which spiritual caregivers joined 3 PaTz-groups whose members referred patients or their relatives with spiritual care needs to them. Evaluation occurred through (i) monitoring of the implementation, (ii) in-depth interviews with patients (n = 5) and involved spiritual caregivers (n = 5), (iii) short group interviews in 3 PaTz-groups (17 GPs, 10 nurses and 3 palliative consultants), and (iv) questionnaires filled out by the GP after each referral, and by the spiritual caregiver after each consultation. Data was analysed thematically and descriptively. RESULTS: Consultations mostly took place on appointment at the patients home instead of originally intended walk-in consultation hours. Consultations were most often with relatives (72%), followed by patients and relatives together (17%) and patients (11%). Relatives also had more consecutive consultations (mean 4.1 compared to 2.2 for patients). Consultations were on existential and relational issues, loss, grief and identity were main themes. Start-up of the referrals took more time and effort than expected. In time, several GPs of each PaTz-group referred patients to the spiritual caregiver. In general, consultations and joint PaTz-meetings were experienced as of added value. All patients and relatives as well as several GPs and nurses experienced more attention for and awareness of the spiritual domain. Patients and relatives particularly valued professional support of spiritual caregivers, as well as recognition of grief as an normal aspect of life. CONCLUSIONS: If sufficient effort is given to implementation, listening consultation services can be a good method for PaTz-groups to find and cooperate with spiritual caregivers, as well as for integrating spiritual care in primary palliative care. This may strengthen care in the spiritual domain, especially for relatives who are mourning.


Subject(s)
Palliative Care/methods , Patient Satisfaction , Referral and Consultation/standards , Spiritualism , Adult , Caregivers/psychology , Caregivers/statistics & numerical data , Female , Focus Groups/methods , Humans , Interviews as Topic/methods , Male , Middle Aged , Netherlands , Qualitative Research , Referral and Consultation/trends , Surveys and Questionnaires
16.
BMC Health Serv Res ; 20(1): 498, 2020 Jun 03.
Article in English | MEDLINE | ID: mdl-32493309

ABSTRACT

BACKGROUND: In order to analyze use of health services and identify sources of delays in accessing the right care for patients with Alzheimer's disease and related dementias (AD/ADRD), understanding of care seeking pathways is needed. The objectives of this study were: (i) to explore pathways to hospital care for patients with AD/ADRD and (ii) to describe challenges experienced by the patients and their families while seeking health care. METHODS: Using purposive sampling, 30-in-depth, semi-structured interviews were conducted among caregivers of older adults diagnosed with dementia from rural Southwestern, Uganda. Data was analyzed using ATLAS. Ti software. RESULTS: There was variability in pathways to care from individual to individual. There was one broader theme captured: points of care choice with four broader categories: hospitals, clinics, places of religious worship and traditional healers' shrines, each with its facilitating factors, outcomes and challenges encountered. Most of the respondents reported use of hospitals at first and second visit to the health care point but places of religious worship became more common from third to sixth health care encounter. Major improvements (58.1%) were observed on hospital use but little or no help with prayers, clinics and traditional healers. The challenges experienced with formal points of care focused on lack and cost of prescribed drugs, weakening effect of the drugs, lack of skills to manage the condition, and lack of improvement in quality of life. These challenges together with knowledge gap about the disease and belief in spiritual healing facilitated the shift from formal to informal health care pathways, more particularly the places of religious worship. CONCLUSIONS: Our study findings indicate that caregivers/families of patients with dementia went to different places both formal and informal care settings while seeking health care. However, hospital point of care was more frequent at initial health care visits while places of worship took the lead at subsequent visits. Although no specific pathway reported, most of them begin with hospital (formal) and end with non-formal. We recommend that health systems carry out public awareness on dementia.


Subject(s)
Alzheimer Disease/therapy , Dementia/therapy , Health Services Accessibility , Hospitals, Rural , Adolescent , Adult , Aged , Aged, 80 and over , Caregivers/psychology , Caregivers/statistics & numerical data , Female , Humans , Male , Middle Aged , Patient Acceptance of Health Care/statistics & numerical data , Qualitative Research , Uganda , Young Adult
17.
BMC Public Health ; 20(1): 746, 2020 May 24.
Article in English | MEDLINE | ID: mdl-32448259

ABSTRACT

BACKGROUND: Nigeria has one of the highest child mortality rates in the world, with an estimated 750,000 deaths annually among children under age five. The majority of these deaths are due to pneumonia, malaria, or diarrhea. Many parents do not seek sick-child care from trained, biomedical providers, contributing to this high rate of mortality. METHODS: This qualitative study explores factors enabling or preventing parents from seeking care for sick under-five children in Nigeria's Kogi and Ebonyi states, including gender-related roles and social norms. Interviews were conducted with parents of sick under-five children and service providers, and focus group discussions were held with community leaders to assess how care-seeking behavior was influenced by four modes from the Colvin et al. conceptual framework for household decision-making and pathways to care. These include (1) caregivers' recognition and response to illness, (2) seeking advice and negotiating access within the family, (3) making use of community-based treatment options, and (4) accessing biomedical services. RESULTS: Parents were found to have a general understanding of illness symptoms but did not always attribute illness to biomedical causes. Intra-household decision-making processes were shaped by gender dynamics between men and women, and were found to have great effects on decisions to seek care. Use of traditional medicine and self-treatment were found to be common first steps in treatment before turning to the biomedical care system. Once the decision to seek biomedical care was taken, the route of seeking care varied between seeking care at chemists and then continuing to health facilities or starting with a health facility and then accessing prescriptions from a chemist. CONCLUSION: We conclude that care-seeking decisions do not follow a linear process; that intra-household decision-making processes particularly among parents should not be underestimated in addressing sick-child care seeking; and that, given the role of mothers as primary caregivers, their knowledge in illness recognition and agency in care-seeking decision-making, and seeking biomedical care, is deserving of future study.


Subject(s)
Attitude to Health , Caregivers/psychology , Diarrhea/therapy , Malaria/therapy , Parents/psychology , Patient Acceptance of Health Care/psychology , Pneumonia/therapy , Adolescent , Adult , Caregivers/statistics & numerical data , Child , Child, Preschool , Decision Making , Family Characteristics , Female , Focus Groups , Humans , Infant , Infant, Newborn , Male , Nigeria , Patient Acceptance of Health Care/statistics & numerical data , Qualitative Research
18.
PLoS One ; 15(5): e0232838, 2020.
Article in English | MEDLINE | ID: mdl-32384106

ABSTRACT

BACKGROUND: In South Africa, 30.9% of children under five years with Severe Acute Malnutrition (SAM) died in 2018. We aimed to identify factors associated with mortality among children under five years hospitalized with SAM in Limpopo province, South Africa. METHODS: We conducted a cross-sectional study including children under five years admitted with SAM from 2014 to 2018 in public hospitals of Limpopo province. We extracted socio-demographic and clinical data from hospital records. We used logistic regression to identify factors associated with mortality. FINDINGS: We included 956 children, 50.2% (480/956) male and 49.8% (476/956) female. The median age was 13 months (inter quartile range: 9-19 months). The overall SAM mortality over the study period was 25.9% (248/956). The most common complications were diarrhea, 63.8% (610/956), and lower respiratory tract infections (LRTIs), 42.4% (405/956). Factors associated with mortality included herbal medication use (adjusted Odds Ratio (aOR): 2.2, 95% Confidence Interval (CI): 1.4-3.5, p = 0.001), poor appetite (aOR: 2.7, 95% CI: 1.4-5.2, p = 0.003), Mid-upper circumference (MUAC) <11.5 cm (aOR: 3.0, 95% CI: 1.9-4.7, p<0.001), lower respiratory tract infections (LRTIs) (aOR: 1.6, 95% CI: 1.2-2.0, p<0.001), anemia (aOR: 2.5, 95% CI: 1.1-5.3, p = 0.021), hypoglycemia (aOR: 12.4, 95% CI: 7.1-21.8, p<0.001) and human immunodeficiency virus (HIV) infection (aOR: 2.3, 95% CI: 1.6-3.3, p<0.001). INTERPRETATION: Herbal medication use, poor appetite, LRTIs, anemia, hypoglycemia, and HIV infection were associated with mortality among children with SAM. These factors should guide management of children with SAM.


Subject(s)
Child Nutrition Disorders/mortality , Child, Hospitalized/statistics & numerical data , Hospital Mortality , Infant Nutrition Disorders/mortality , Severe Acute Malnutrition/mortality , Adult , Anemia/epidemiology , Caregivers/statistics & numerical data , Child , Child Nutrition Disorders/therapy , Child, Preschool , Comorbidity , Cross-Sectional Studies , Diarrhea, Infantile/epidemiology , Feeding and Eating Disorders/epidemiology , Female , HIV Infections/epidemiology , Humans , Hypoglycemia/epidemiology , Infant , Infant Nutrition Disorders/therapy , Logistic Models , Malaria/epidemiology , Male , Plant Preparations , Respiratory Tract Infections/epidemiology , Retrospective Studies , Risk Factors , Socioeconomic Factors , South Africa/epidemiology
19.
Nutrients ; 12(4)2020 Mar 26.
Article in English | MEDLINE | ID: mdl-32224909

ABSTRACT

Ugandan children are vulnerable to vitamin A deficiency (VAD), iron deficiency (ID) and zinc deficiency (ZnD) because they are fed on complementary foods (CFs) low in vitamin A, iron and zinc. This study developed a novel provitamin A carotenoid (PVAC), iron and zinc rich common bean pumpkin blend (BPB) complementary food (CF) from locally available pumpkin and common bean in Uganda and aimed to determine its acceptance, compared to a control pumpkin blend (PB). Seventy caregivers participated in the study. The sensory attributes (taste, colour, aroma, texture and general acceptability) of BPB and PB were rated using a five-point facial hedonic scale (1 = very bad, 2 = bad, 3 = neutral, 4 = good, 5 = very good). Focus group discussions (FGDs) were conducted to assess the perceptions of caregivers about the BPB. The chi square test was used to detect the proportion difference for each sensory attribute between BPB and PB, whilst FGD data were analysed by thematic analysis. A proportion of 64% to 96% of the caregivers rated both BPB and PB as acceptable (good to very good) for all the sensory attributes. There was no significant difference in caregiver acceptability for all attributes between BPB and PB (p > 0.05). Caregivers had positive perceptions about the taste, texture, aroma and colour of the BPB. Caregivers were keen to know the specific varieties of common bean and pumpkin used to formulate the PVAC, iron and zinc rich BPB. In conclusion, BPB was acceptable to caregivers, and they were interested to know how to prepare and use it as a CF.


Subject(s)
Caregivers/statistics & numerical data , Cucurbita , Food, Fortified , Micronutrients , Phaseolus , Adult , Female , Focus Groups , Food Preferences , Health Knowledge, Attitudes, Practice , Humans , Infant , Infant Nutritional Physiological Phenomena , Iron , Male , Micronutrients/administration & dosage , Micronutrients/analysis , Provitamins , Uganda , Vitamin A , Young Adult , Zinc
20.
J Am Geriatr Soc ; 68(6): 1193-1201, 2020 06.
Article in English | MEDLINE | ID: mdl-32096884

ABSTRACT

OBJECTIVE: To test whether self-administered acupressure reduces stress and stress-related symptoms in caregivers of older family members. DESIGN: In this randomized, assessor-blind, controlled trial, 207 participants were randomized (1:1) to an acupressure intervention or a wait-list control group. SETTING: Community centers in Hong Kong, China. PARTICIPANTS: Primary caregivers of an older family member who screened positive for caregiver stress with symptoms of fatigue, insomnia, or depression. INTERVENTION: The 8-week intervention comprised four training sessions on self-administered acupressure, two follow-up sessions for learning reinforcement, and daily self-practice of self-administered acupressure. MEASUREMENTS: The primary outcome was caregiver stress (Caregiver Burden Inventory). Secondary outcomes included fatigue (Piper Fatigue Scale), insomnia (Pittsburgh Sleep Quality Index), depression (Patient Health Questionnaire), and health-related quality of life (QoL) (12-item Short-Form Health Survey version 2). An intention-to-treat analysis was adopted. RESULTS: Of 207 participants, 201 completed the study. Caregiver stress in the intervention group was significantly lower than that in the control group after 8 weeks (difference = -8.12; 95% confidence interval [CI] = -13.20 to -3.04; P = .002) and at 12-week follow-up (difference = -8.52; 95% CI = -13.91 to -3.12; P = .002). The intervention group, relative to the control group, also had significantly improved secondary outcomes of fatigue (difference = -0.84; 95% CI = -1.59 to -0.08; P = .031), insomnia (difference = -1.34; 95% CI = -2.40 to -0.27; P = .014), depression (difference = -1.76; 95% CI = -3.30 to -0.23; P = .025), and physical health-related QoL (difference = 3.08; 95% CI = 0.28-5.88; P = .032) after 8 weeks. CONCLUSION: Self-administered acupressure intervention significantly relieves self-reported caregiver stress and co-occurring symptoms in those caring for older family members. Further studies are needed to measure the symptoms objectively and to examine the clinical importance of the observed improvement in caregiver stress. J Am Geriatr Soc 68:1193-1201, 2020.


Subject(s)
Acupressure , Caregivers/statistics & numerical data , Family , Self Care , Stress, Psychological/psychology , Depression/psychology , Fatigue/psychology , Female , Hong Kong , Humans , Male , Middle Aged , Quality of Life , Sleep Initiation and Maintenance Disorders/psychology , Surveys and Questionnaires
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