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Background: Postoperative anal dilations (PAD) are the standard of care for patients after a posterior sagittal anorectoplasty (PSARP) for anorectal malformation (ARM) or a transanal pull-through (TP) procedure for Hirschsprung disease (HD). This study assessed the psychosocial impact of PAD among caregivers of children with ARM or HD, which may inform postoperative care strategies. Methods: Caregivers of patients with ARM and HD who underwent PSARP or TP within five years participated in the online survey. Questions included demographics, patient and caregiver experiences with PAD, and baseline psychosocial functioning. Quantitative results were reported descriptively, while qualitative responses were summarized as major themes. Results: The survey indicated a response rate of 26% caregivers, with most being female (91%) and biological mothers (85%). Patients were mostly male (65%), born with ARM (74%), and were five months old on average when PAD began. Caregivers reported that during PAD, children experienced distress (56%), pain (44%), and fear (41%), while a third noted no negative reactions. Over time, their child's ability to cope with PAD got easier (38%) or stayed the same (41%). Caregivers reported worry/anxiety (88%), guilt (71%), stress (62%), and frustration (35%), noting that additional coping strategies to manage the emotional and logistical challenges of daily PAD would be helpful. Conclusion: Although PAD is necessary, it can be highly stressful for the patients and their caregivers. Key findings emphasized the need for additional coping strategies and highlighted the importance of integrating psychosocial support into the postoperative care regimen. [ABSTRACT FROM AUTHOR]

Individuals with Alzheimer's disease and related dementias often require substantial support from other people. Much of the care-giving is from family members who eventually experience physical, emotional and financial stress, depression and fatigue. In Uganda, families are a cornerstone in providing care to individuals with dementia. However, little is known about the psychosocial supports available to the care-givers in their care-giving role. We assessed the psychosocial supports available to care-givers of individuals with Alzheimer's disease and related dementias in southwestern Uganda. We conducted 34 in-depth interviews at three referral hospitals at which care-givers identified by the treating clinicians were approached for informed consent. The interviews were conducted until thematic saturation was reached, and the interviews were translated and transcribed. Thematic content analysis was used to analyse the data. Care-giver supports were structured into two major themes: medical supports utilised and supports beyond the medical care system. Medical supports highlighted information provided by medical professionals. Supports beyond the medical care system included emotional and instrumental supports provided by religious leaders, the local communities and family members. Care-givers for individuals with dementia in southwestern Uganda receive educational support from medical practitioners, and unstructured emotional and instrumental supports from the family and community. [ABSTRACT FROM AUTHOR]

Objective: Family caregivers are often intensively involved in palliative and end‐of‐life cancer care. A variety of interventions to support family caregivers have been developed, differing in target population, modality, and components. We aimed to systematically examine characteristics and the effectiveness of interventions to support family caregivers of patients with advanced cancer. Methods: A systematic review was conducted using Embase, Medline Ovid, Web of Science, Cochrane, Google Scholar, and Cinahl. This review included quantitative studies published from January 2004 until January 2020 reporting on interventions to support family caregivers of patients with advanced cancer in all care settings. Results: Out of 7957 titles, 32 studies were included. Twenty‐two studies were randomized controlled trials. Interventions were delivered to four target populations: individual family caregivers (n = 15), family caregiver‐patient dyads (n = 11), families (n = 2) and peer groups (n = 4). Most interventions (n = 26) were delivered face‐to‐face or by phone, two were delivered online. Most interventions included multiple components and were primarily aimed at supporting family caregivers' self‐care. Twenty‐nine interventions were shown to have beneficial effects on family caregiver outcomes, mostly in the psycho‐emotional (n = 24), daily functioning (n = 13) and social dimension (n = 6). Individual interventions were mainly effective in the psycho‐emotional dimension, dyad and family interventions in the psycho‐emotional and social domain, and group interventions mainly had an effect on daily functioning. Conclusions: Interventions to support family caregivers in advanced cancer care vary widely. Most intervention studies reported beneficial effects for the wellbeing of family caregivers. There is evidence that the target group is associated with beneficial effects on different outcome dimensions. [ABSTRACT FROM AUTHOR]

Objective: Given the substantial demands of cancer caregiving, practical and psychometrically sound tools to evaluate distress among cancer caregivers are needed. CancerSupportSourceTM‐Caregiver is a distress screening, referral, and support program designed to identify the unmet needs of cancer caregivers and link caregivers to desired resources and support. This study refined and finalized the CancerSupportSource‐Caregiver screening measure and examined its psychometric properties. Methods: Using an analytic sample of 400 caregivers to people with cancer, we first performed item reduction by assessing exploratory factor analysis, external/internal item quality, and judging theoretical and practical implications of items. Confirmatory factor analysis along with reliability and validity analyses were then conducted to corroborate dimensionality and psychometric properties of the final measure. Nonparametric receiver operating characteristic curve analyses determined scoring thresholds for depression and anxiety risk subscales. Results: Scale refinement resulted in an 18‐item measure plus one screening item assessing tobacco and substance use. Items represented five domains of caregiver concerns: emotional well‐being, patient well‐being, caregiving tasks, finances, and healthy lifestyle. Our analyses showed strong internal consistency and test‐retest reliability, a replicable factor structure, and adequate convergent, discriminant, and known groups validity. Sensitivity of 2‐item depression and 2‐item anxiety risk subscales were 0.95 and 0.87, respectively. Conclusions: CancerSupportSource‐Caregiver is a reliable and valid multidimensional measure of caregiver distress that also screens for risk for clinically significant depression and anxiety. It can be implemented within a distress screening, referral, and follow‐up program to rapidly assess caregivers' unmet needs and enhance caregiver well‐being across the care continuum. [ABSTRACT FROM AUTHOR]

The research was influenced by the growing demand for psychosocial support interventions owing to disintegrating family and community support systems and ineffective management of psychosocial support resulting from the effects of COVID-19 pandemic. The study analysed risk management in the Eswatini psychosocial support program for orphan and vulnerable children from a project management perspective. A self-administered questionnaire was distributed in one region where psychosocial support problems were most prevalent. The survey attracted 109 responses from caregivers, who are the face of psychosocial support service in the communities. Twelve risk indicators were analysed representing manpower, material, machine, and methods risks. Research results show that all the twelve risk indicators had moderate to very high probability of happening and the same risks could pose high to critical impact if they occurred. Respondents felt that COVID19 caused significant change to four of the assessed risks, low change to seven risks and no change to one. This implies that the high probability and high impact of the assessed risks impeded the provision of psychosocial support in the country. The proposed way forward includes the implementation of project risk management strategies. This could include implementing the proposed psychosocial support risk prioritisation model and gaining new knowledge and information through research. The use of a model recognises the dynamic nature of project risk management. Therefore, the authorities need to continuously review and monitor psychosocial management processes and accommodate emerging issues such as COVID-19. Management must aim to eliminate complacency in psychosocial support delivery processes. [ABSTRACT FROM AUTHOR]

Various countries in Europe have different strategies for promoting care solutions for dementia challenges. The different approaches of Austria, Belgium, Czechia, Denmark, Finland, Germany, Gibraltar, Ireland, Israel, Malta, Nederland, Norway, Sweden and the United Kingdom (Scotland and Wales) were investigated. Dementia has a significant social, psychological and economic impact on the individual, family and society. As the disease progresses dementia sufferers become increasingly dependent. As many dementia sufferers are at home during the initial stages, the physical, emotional, and social demands of the dementia sufferers are often covered by informal caregivers. This study, therefore, aims to investigate the integration of psychosocial interventions for comprehensive care pertaining to informal caregivers of people with dementia in Europe. Furthermore, the study will highlight how implementation of technologies might enable psychosocial support of informal caregivers. The data is based on 15 national dementia strategies from various European countries. Data was based on preexisting coding systems with the predefined keywords and analyzed by qualitative content analysis by four of the authors. Our results show that psychosocial support is provided in various modalities and that informal caregivers need to be supported by a psychosocial approach. Due to this need the national dementia strategies should include measures to reduce the emotional burden of informal caregivers. Psychosocial support provided to informal caregivers in a comprehensive and systematic way is likely to enable informal caregivers to handle the emotional, cognitive, and behavioral consequences of the disease and its treatment, while helping to maintain their work-life balance. [ABSTRACT FROM AUTHOR]

Aims and objectives: To map the existing literature on support models provided to family members during the cancer trajectory. Background: Cancer diagnosis, treatment and survivorship have a profound influence on the surrounding family members. This scoping review is part of the development of a support model for family members of persons diagnosed with colorectal cancer. Design: The method was guided by the Arksey and O'Malley framework, described in the Joanna Briggs Institute guidelines, and the reporting is compliant with PRISMA‐ScR Checklist. Searches were conducted in PubMed, CINAHL and PsycINFO from November 2019–February 2020 with no limitation in publication year or study design. Complementing searches were conducted in reference lists and for grey literature, followed by an additional search in September 2020. Inclusion criteria were primary research about support provided by health care, to family members, during cancer, of an adult person, in Swedish or English, of moderate or high methodological quality. Quality was assessed using the Joanna Briggs Institute critical appraisal tools. Data were extracted using a charting form. Result: A total of 32 studies were included in the review describing 39 support models. Conclusion: The mapping of the existing literature resulted in the identification of three themes of support models: psychoeducation, caregiver training and psychological support. In addition, that future research should target a specific diagnosis and trajectory phase as well as include family members and intervention providers in model development. Relevance for clinical practice: Knowledge from the literature on both the needs of the family members and existing support models should be incorporated with the prerequisites of clinical practice. Clinical practice should also be complemented with structured assessments of family members' needs conducted regularly. [ABSTRACT FROM AUTHOR]

We are committed to an AIDS free generation by 2030 – nine short years away. This article reflects on the global and South African data on new infections, total number of children and adolescents living with HIV as well as data on vertical transmission. The article includes the voices of key stakeholders in the quest to end HIV in children so that lessons from their experiences can be used by policy makers in strengthening services. [ABSTRACT FROM AUTHOR]

This case study explores the arriving process of an unaccompanied minor refugee in Germany and his perception of the psychosocial support he received. The aim is to elaborate possibilities to support refugee adolescents' arrival processes adequately. Two interviews—theme‐centered and narrative—were conducted and afterwards examined by a group of five researchers who used experts' validation as the analyzing tool. Four main dimensions were identified contributing to the complex dynamics in psychosocial work with unaccompanied minor refugees: (a) the distinct need for self‐determination and idealization, (b) the fight for state recognition as a legal refugee, (c) the attempt of achieving recognition by the society, and (d) the inability of building trusting and affective relationships with friends and caregivers in the host country. Thus, professionals working with unaccompanied minor refugees need to consider the adolescents' demand for self‐determination and perceive idealization not only as a defense mechanism but also as a coping strategy to survive in an unpredictable environment. Being a reliable object that can be used by the adolescent can help to establish a trusting basis for the relationship. This case study indicates that approaches of psychosocial support with unaccompanied minor refugees need to acknowledge and work with the interrelation between the inner world and the external reality of refugee adolescents. [ABSTRACT FROM AUTHOR]

Objectives: Families impacted by paediatric cancer are met with logistical, financial and psychological impacts, with severe acute respiratory syndrome coronavirus two creating additional barriers and stressors for these families. Connected Health (CH) may facilitate cancer care. The objective of the present study was to systematically review CH for families/informal caregivers affected by paediatric cancer. Methods: Using search terms relating to: (1) paediatric cancer, (2) family/caregivers and (3) CH, the databases of PsycINFO, Pubmed, EMBASE and Web of Science were searched. Inclusion criteria included an evaluation of CH technologies for supportive care for families/caregivers affected by paediatric cancer at any stage of treatment or survivorship. Results: Sixteen studies met inclusion criteria. CH was primarily web‐based (n = 6), however smartphone applications (n = 5), telehealth (n = 2) and online groups (n = 3) were utilised. Intervention areas included psycho‐social (n = 6), health and information provision (n = 8) and palliative care (n = 2). Conclusions: While limited studies have evaluated the impact of CH on families living with paediatric cancer, emerging evidence suggests potential benefits. More evidenced‐based interventions are required. [ABSTRACT FROM AUTHOR]

This study was designed to explore the psychosocial needs of the 400 elderly (Male 220 and Female 180), age varying from 60 years and above were selected by using multistage sampling technique from Ikare-Akoko, Ondo State, Nigeria. At the first stage of the sampling, three Communities were selected through a simple random sampling from the list of communities in the local government area. At the second stage of sampling, three quarters were selected also by simple random sampling. In the third stage of sampling, 15 houses in each quarter were selected by systematic random sampling technique that is house-hold with elderly persons in every fourth house were selected until the sample size was attained. A pilot tested structured interview schedule (questionnaire) was used to collect data. The research instrument used was a self-designed questionnaire to explore the psychosocial needs of the elderly. The instrument was validated and the reliability was established using the test retested method and a retest coefficient of 0.84 was arrived at. The study revealed the psychosocial needs, the barriers and the coping strategies of the elderly. The psychosocial needs experienced by majority of the elderly include; the feeling of loneliness, ill treatment from family members, caregivers and members of the society, physical and emotional abuse, anxiety, restlessness, fear and rejection. Among barriers experienced by the elderly were; distance from spouse, loved ones and other social needs, loss of spouse, the environment and ageing. Amongst the coping strategies adopted by elderly include; to be informed about their condition of health and treatment regimen as well as maintaining social contacts through a social system. There was a significant relationship between psychosocial needs to both barriers to accessing these psychosocial needs and the coping strategies adopted by elderly in the study area to these psychosocial needs. The study revealed that the psychosocial needs and health of the elderly can be protected through mass education of family and care givers. Therefore, psychosocial needs of the elderly and ageing should be given its due attention so as to properly understand the changes which occur as a result of ageing and boost the health and well-being of the elderly. [ABSTRACT FROM AUTHOR]

Objective: To evaluate whether a blended (face-to-face and online) psychosocial support program for caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) and Progressive Muscular Atrophy (PMA), aimed at enhancing feeling of control over caregiving, reduces psychological distress. Methods: A randomized controlled trial using a wait-list control design was conducted. Caregiver-patient dyads were randomly assigned to either the support program (n = 74) or to a wait-list control group (n = 74). The support program, based on Acceptance and Commitment Therapy, consists of 1 face-to-face contact, 6 online guided modules and 1 telephone contact. Participants filled in questionnaires at baseline, 3 and 6 months. Caregivers' feeling of control over caregiving was assessed using two self-efficacy measures. Primary outcome was caregivers' psychological distress. Secondary outcomes included caregiver burden, caregiver quality of life and patients' quality of life and psychological distress. Intention-to-treat and per-protocol analyses were performed using linear mixed models. Results: The support program had no effect on the primary or secondary outcomes, despite a significant positive effect on the intervening variable self-efficacy with regard to control over thoughts. Almost half of the caregivers did not complete the intervention with the most frequently reported reason being lack of time. Caregivers who completed the intervention evaluated the support program positively. Conclusions: The support program did not reduce distress of partners of patients with ALS/PMA but may be beneficial by increasing feeling of control over the caregiving situation. The high level of intervention drop outs may have limited the ability to detect an intervention effect. Trial registration: Netherlands Trial Registry NTR5734, registered 28 March 2016. [ABSTRACT FROM AUTHOR]

Background: The establishment of Child Friendly Spaces (CFSs) has become a widespread intervention targeting protection and support for displaced children in humanitarian contexts. There is a lack of evidence of impact of these interventions with respect to both short‐term outcomes and longer‐term developmental trajectories. Methods: We collected data from caregivers of Congolese refugee children residing in Rwamwanja Refugee Settlement at three timepoints. To assess short‐term impact of CFSs, we compared indicators assessed shortly after refugees' arrival (baseline, T1) and endline (T2, three to six months after CFS implementation) amongst 430 CFS attenders and 161 nonattenders. Follow‐up assessments after the end of CFS programming were conducted 18 months post‐baseline (T3) with caregivers of 249 previous CFS attenders and 77 CFS nonattenders. Results: In the short‐term, attendance at CFSs was associated with better maintenance of psychosocial well‐being (PSWB; β = 2.093, p < .001, Cohen's d = .347) and greater increases in developmental assets (β = 2.517, p < .001, Cohen's d = .231), with significantly stronger impacts for girls. CFS interventions meeting higher programing quality criteria were associated with greater impact on both PSWB and development assets (β = 2.603 vs. β = 1.793 and β = 2.942 vs. β = 2.337 for attenders at higher and lower‐quality CFSs c.f. nonattenders, respectively). Amongst boys, benefits of program attendance were only indicated for those attending higher‐quality CFS (β = 2.084, p = .006 for PSWB). At follow‐up, however, there were no discernable impacts of prior CFS attendance on any measures. Age and school attendance were the only characteristics that predicted an outcome – developmental assets – at follow‐up. Conclusions: Attendance at CFSs – particularly involving higher‐quality programming – supported children's well‐being and development. However, sustained impact beyond active CFS programming was not demonstrated. Intervention goals and strategies in humanitarian contexts need to address the challenge of connecting children to other resources to facilitate developmental progress in conditions of protracted displacement. [ABSTRACT FROM AUTHOR]

Aims and Objectives: To conduct a formative evaluation of the iPad-Enhanced Shared Care Intervention for Partners (iSCIP) among persons with heart failure (HF), family caregivers and clinicians. Together, persons with HF and family caregivers are referred to as partners. Background: There is growing awareness of the caregiver’s contributions to HF self management, social support and reciprocal benefits of interventions that involve both partners. The iSCIP engages both partners in a six-session psychosocial intervention to address three preventable causes of poor outcomes in a HF population: poor self-management skills, inadequate social support and underutilisation of palliative care. An iPad app is used to organise the intervention. The goals of the iSCIP are to engage partners in HF self-management, communication about the HF patient’s care values and preferences, and future planning. Design: A qualitative focus group design was used. Methods: Seven clinicians and eight partners participated in focus groups to explore their experiences, needs and reaction to the iSCIP content and technologies employed. Open-ended questions and closed-ended surveys were used to collect data. Deductive content analysis was used to analyse the qualitative data. NVivo software was used for qualitative data analysis. Bayesian statistical models were used to analyse numeric data. Results: The iSCIP met partners’ and clinicians’ needs to improve self-management, communicate about care values and preferences and plan for the future. Quantitative analysis of numeric data supported our qualitative findings, in that both groups rated the intervention components useful to very useful. Implications for practice: These findings add to the growing evidence of the feasibility and acceptability of programs that address care values and preferences, and care planning. The iSCIP can be used as a guide for developing interventions and software applications, which involve both partners in care and palliative-care discussions. [ABSTRACT FROM AUTHOR]

Cash transfers are an increasingly popular approach to poverty and vulnerability reduction, including, more recently, in humanitarian contexts. In the Occupied Palestinian Territories, the National Palestinian Cash Transfer Programme provides quarterly payments to extremely poor households. As of September 2013, it reached 57,449 households in Gaza and 48,229 in the West Bank — a total of 105,678. While there is robust international evidence on the positive effects of cash transfers in terms of children's access to basic education and health services, much less is known about the linkages between cash transfers and effects on children's right to protection from exploitation, abuse and neglect. This article draws on mixed methods primary research undertaken in Gaza in 2013 to explore these linkages, paying particular attention to transfer effects on caregiver resources and time use, parental interactions with children and children's psychosocial wellbeing at household, school and community levels. It also reflects on the strengths and weaknesses of service providers working on social protection and child protection in order to identify how better to tackle child protection deficits through the government's broader economic-strengthening efforts. [ABSTRACT FROM AUTHOR]

Abstract: Objectives: To assess the supportive care needs and interest in related services among brain tumour patients and their carers and to compare the level of unmet needs to other cancer populations. Methods: A cross-sectional survey was posted to 363 households who were subscribed to the Queensland Cancer Fund Brain Tumour Support Service in 2005. Overall, 75 patients and 70 carers (response rate 29.8%) returned completed questionnaires. Measures were the Supportive Care Needs Survey (SCNS-34) and a brain tumour specific subscale for patients and carers, as well as the Hospital Anxiety and Depression Scale (HADS). Results: Patients most frequently reported requiring support to overcome fatigue, uncertainty about the future and not being able to do the things they used to do. Carers wanted help dealing with fears about the patients mental or physical deterioration, with the impact caring had on their own life, and with reducing stress in the patient''s life. Among patients, 30% reported anxious mood and 17% depressed mood on the HADS, while corresponding numbers for carers were 40% and 10%, respectively. Patients and/or carers with higher than average supportive care needs expressed greater interest in support services, such as those to improve physical activity, using community services more effectively and to manage stress. Greater emotional distress predicted higher supportive care needs (e.g. odds ratio depressed patients=2.11; (95% confidence interval 1.10–4.03), while no association was detected between patients’ or carers’ demographic characteristics, or patients’ self-reported medical status and higher than average supportive care needs. Conclusion: The level of unmet supportive care needs observed among patients with a brain tumour and their carers is similar to that observed among cancer populations with metastatic disease. Practice implications: Interventions for this group should integrate lifestyle, coping support, and neuropsychological rehabilitation. [Copyright &y& Elsevier]

This paper reports the patient care experience during the trajectory of the radiotherapy. Plights are multiple. Patients are confronted with a complex and unknown distressing space, an irrelevant information, a banalisation of side effects, an isolation with a frequent inadequate support of their family or the caregivers team, with the fear of a definitive abandonment at the end of the treatment without conforting follow-up. It is imperative to state a real policy in order to improve the patient support. Sensibilisation and training of the caregivers, in spite of a frequent overbooking technical work, is required in a pluridisciplinary approach to provide a relevant reception with the collaboration of psychologists, social workers and self care groups and associations. The personal implication of the physicians and technologists is also essential. The simple smile is the intangible proof of the reliable emotional support. [Copyright &y& Elsevier]

Much has been written on the psychosocial support of orphans and vulnerable children (OVC) around the world regarding their well-being. However, there is still a lack of information on the efficacy of the Basic Education Assistance Module (BEAM) both as material and a psychosocial support intervention for OVCs within the rural communities of Zimbabwe. This article is a qualitative phenomenological study seeking to examine the perceptions, views and feelings of the OVC, care-givers and community leaders on their experiences with BEAM as a material and psychosocial support intervention in Zimbabwe. In-depth interviews were conducted with 10 OVCs which consist of the primary and secondary school going children; 10 care-givers and 10 community leaders purposively selected in the Gutu District of Zimbabwe. The results showed that whilst the BEAM has been applauded as an OVC psychosocial support intervention, its efficacy was marred by its failure to proportionately and holistically provide all the basic needs of the school-going OVCs within the rural communities. This study therefore recommends the establishment of the OVC stakeholders integrated support model, which is deeply entrenched in a holistic approach for the provision of the material and psychosocial support needs of the OVCs in Zimbabwe. [ABSTRACT FROM AUTHOR]