‘After the stroke’: patients’ and carers’ experiences of healthcare after stroke in Scotland

We report findings on patients with stroke and carers experiences of the healthcare system in Scotland after stroke. These findings emerged from data collected in a primary qualitative study exploring patients with stroke and carers perception of a Functional Electrical Stimulation (FES) Clinic. Rich data emerged in relation to healthcare after stroke as experienced by both patients and carers, highlighting important clinically relevant messages and constituting an important area for dissemination. Thirteen patients with stroke and nine carers consented to participate. Data were collected using face‐to‐face semi‐structured interviews, undertaken in April and May 2007, and analysed using the framework of Interpretative Phenomenological Analysis (IPA). IPA aims to explore in depth the participants lived experiences of a specific phenomenon. An overarching theme of ‘After the stroke’ was identified. Within this, six sub‐themes emerged entitled, (1) ‘What is wrong?’; (2) ‘Help came quickly’; (3) ‘Something is still wrong’; (4) ‘In the hospital’; (5) ‘I’m taking them home’ and (6) ‘Back at home’. Interestingly, patients with stroke and carers recalled similar parts of the pathway through the healthcare system after stroke, resulting in the six chronological sub‐themes. The data highlighted issues surrounding recognition of stroke symptoms by both participants and professionals; expeditious admission to hospital and stroke unit; consultation during the discharge planning process and access to support and community follow up. Despite the availability of clinical guidelines to direct the management of stroke, this study suggests that the experiences of patients with stroke and carers do not always concur with guideline recommendations. These results highlight that such recommendations do not always transfer into clinical practice. Both clinicians and service managers should consider these issues when delivering care to patients after stroke.     

You never walk alone: An exploratory study of the needs and burden of an informal care group

Little is known about the dynamics of a group of people giving informal care together. The aim of this study was to investigate the characteristics of an informal care group, the obstacles the informal care group experiences, the needs and desires they have and how the informal care group can be supported by general practitioners (GPs) and other professionals. Nine informal care groups were interviewed based on a questionnaire that was preapproved by the six Flemish official informal caregiver organisations. The results were analysed using open coding. A survey was conducted among 137 caregivers who were part of a group. Univariate analysis was performed. Informal care group usually consist of close relatives of the patient, with often the partner of the patient as the main caregiver. The size of the informal care group depends on the size of the family. If there are more caregivers in a group, the perceived burden of the individual caregiver decreases. The support of the other caregivers in the group increases capacity. The cooperation and agreements are often spontaneously organised and few problems are reported. There is a large variation in the expectations of support from the general practitioner, ranging from availability in emergencies to information about the possibilities of formal home care. This study depicts a positive image of the informal care group. Being part of a caregiver group both decreases burden and increases capacity. Informal care groups usually function well without a need for formal agreements within the group, and they rarely need a third party to coordinate with them or intervene.     

The associations for separated parents in Italy: Their role for parents’ well‐being and coparenting

After separation or divorce, people generally experience a deterioration of health, not only in terms of physical well‐being but also in terms of emotional and social well‐being. In addition, when separated, individuals are parents as well and they are concerned with the well‐being of their children. The main task for separated parents is to maintain a parental alliance (coparenting) for the sake of their children's well‐being. Social support is a critical resource, which helps parents face their new life condition, promoting their psychological well‐being. In recent years in Italy, many associations targeting separated and divorced parents have been founded: They support ex‐partners during and after separation and are active in defending their rights. These associations are voluntary associations/non‐profit organisations and self‐help groups, which are constituted by parents themselves who associate to support each other in the tasks connected with separation. The present study investigated, with an explorative aim, the role of these associations for separated parents’ well‐being and coparenting abilities. In particular, drawing on a sample of 318 Italian separated parents (73.30% fathers; 26.70% mothers) belonging to a formal association targeting separated parents, the study analysed whether and how the perception of being supported by the association was related to psychological and relational well‐being and to coparenting. Results showed that the more parents perceived to be supported by the association the less they were depressed, the more they were satisfied with the relationship with children and friends, and the more they displayed coparenting abilities. Our findings suggest that social support from these associations is a resource for separated parents’ health.     

Stress and well‐being of unpaid carers supporting claimants through disability benefit assessments

This study assessed the subjective well‐being and perceived stress of unpaid carers of disability benefit claimants. A total of 129 carers from the UK were surveyed between July and September 2017, using a cross‐sectional design. Carers, who provided unpaid support to sick or disabled friends, family or neighbours in a non‐professional capacity, reported here as unpaid carers, were asked to complete a web‐based questionnaire comprising of the Perceived Stress–10‐item Scale (PSS‐10), the Personal Wellbeing Index–Adult (PWI‐A), sociodemographic characteristics, the time they spent caring per day and the number of Personal Independence Payment and Work Capability Assessment interviews prepared for and attended by the person they cared for. Hierarchical regression analyses were performed to assess the effects of the number of benefit assessments on stress and well‐being scores, controlling for carers' sociodemographic characteristics and the time they spent caring. Analyses revealed that the number of times that claimants were exposed to benefit assessments significantly and negatively predicted unpaid carers' well‐being and was positively related to their stress levels. After controlling for sociodemographic characteristics and hours supporting per day, benefit assessments predicted 8.1% of perceived stress and 4.3% of well‐being variance. Being a female unpaid carer of a disability benefit claimant negatively predicted 7.5% of well‐being variance. The results offered unique evidence of the negative psychological effects of disability benefit assessments upon unpaid carers, while adding to the evidence of female carers facing increased risks of psychological distress.     

CHILD CARE SUBSIDIES,MATERNAL HEALTH,AND CHILD–PARENT INTERACTIONS: EVIDENCE FROM THREE NATIONALLY REPRESENTATIVE DATASETS

A complete account of the US child care subsidy system requires an understanding of its implications for both parental and child well‐being. Although the effects of child care subsidies on maternal employment and child development have been recently studied, many other dimensions of family well‐being have received little attention. This paper attempts to fill this gap by examining the impact of child care subsidy receipt on maternal health and the quality of child–parent interactions. The empirical analyses use data from three nationally representative surveys, providing access to numerous measures of family well‐being. In addition, we attempt to handle the possibility of non‐random selection into subsidy receipt by using several identification strategies both within and across the surveys. Our results consistently indicate that child care subsidies are associated with worse maternal health and poorer interactions between parents and their children. In particular, subsidized mothers report lower levels of overall health and are more likely to show symptoms consistent with anxiety, depression, and parenting stress. Such mothers also reveal more psychological and physical aggression toward their children and are more likely to utilize spanking as a disciplinary tool. Together, these findings suggest that work‐based public policies aimed at economically disadvantaged mothers may ultimately undermine family well‐being. Copyright © 2013 John Wiley & Sons, Ltd.     

Impact of paediatric human immunodeficiency virus infection on children's and caregivers' daily functioning and well-being: a qualitative study

Background Human immunodeficiency virus (HIV) infection impacts not only upon the physical health of affected children, but also their psychosocial functions, family relationships and economical status. Caregivers are confronted with complex challenges related to the physical, emotional and financial demands of raising these children. The purpose of this study was to enhance our understanding of the impact of HIV disease on both children's and caregivers' well‐being, using a qualitative inquiry approach. Methods A total of 35 primary caregivers of HIV‐infected children participated in in‐depth interviews. The issues discussed included the major negative impacts on children's daily functioning and well‐being, and the perceived caregiver/parental burden. Participants included parents (40%), grandparents (22.8%), other relatives (e.g. uncles, aunts) (34.3%) and one foster parent (2.8%). Results Qualitative analysis revealed that the major negative impacts of HIV/AIDS included physical symptoms, school performance and relationship changes. The major negative impacts on caregivers' well‐being included acceptance of the diagnosis, dealing with the financial burden and keeping the diagnosis private. Conclusions Approaches are needed to address these challenges by enhancing families' coping skills and building supportive networks.     

Access to therapy services for people with disability in rural Australia: a carers’ perspective

In Australia and around the world, people with disability and their carers living in rural areas face additional challenges compared to their urban‐dwelling counterparts. This cross‐sectional study explored current access to therapy services for people with disability living in western New South Wales as reported by their primary carers. Data were collected using an online and paper survey distributed to carers, from December 2012 until June 2013. Information was sought about the carers, the person they care for, access to physiotherapy, speech pathology, occupational therapy and psychology services. A total of 166 carers participated. Respondents were mostly the carers of a son or daughter (83.6%) , the person they care for had an average age of 17.6 years (range 1–69 years) and more than half were males (56%). The majority of people with disability (73.5%) had received therapy services in the last 2 years. Waiting time and distance travelled to access physiotherapy, speech and occupational therapy services varied. People with disability had to wait an average of 6.6 months to receive speech pathology and had to travel an average of 2.6 hours to receive physiotherapy. The main provider of all services was the specialist disability government department, except for psychology, which is mainly provided in the private sector. From the carers’ perspective, availability and accessibility to services are limited. Carers noted that availability of services was more restricted once people with disability reached adulthood. Lack of choice and frustration with the lack of availability of specialist disability services was reported frequently. Carers believed that timely allied health intervention prevented the development of more severe or complicated conditions that had a greater impact on carers, families, communities and the person with disabilities.     

Adult Adoptees and Their Friends: Current Functioning and Psychosocial Well‐Being*

Adoptees (n= 100 ) and a matched group of their friends completed measures of psychosocial well‐being thought particularly salient for adult adoptees. Results indicated more similarities (life satisfaction, life regrets, purpose in life, intimacy, substance abuse) than differences (connectedness, depression, self‐esteem) between the two groups. Adoptees expressed stronger regrets about 75 general than adopted‐related issues. Follow‐up analyses suggested greater variability within the adoptee than the friend group on several variables; search status helped explain this greater variability.     

On the character and production of ‘active participation’ in neuro‐rehabilitation: an Actor‐Network perspective

The importance of patients’ active involvement in neuro‐rehabilitation after acquired brain injury has been consistently emphasised in recent years. However, most approaches fail to show how ‘active participation’ is practically enacted, focusing on individualised explanations of patient choice and behaviours, or notions of inherent patient traits. Using actor‐network theory (ANT) as a sensitising concept, we investigated neuro‐rehabilitation practices, asking how participation is shaped through biological and socio‐material specificities, how rights to knowledge and expertise are constructed, and how a body acclimatises and adjusts within an order of participation and transformation. We analysed video‐recorded fieldwork extracts, examining the work of adjusting, testing and transforming; the construction of competence and incompetence; and material and social processes involved in the division of the body and its re‐composition. Our findings show how an ANT‐sensitised approach provides a critical understanding and context‐specific characterisation of ‘active participation’, produced through the association of heterogeneous actors at any one time. Such specificity and the distribution of work suggest that efforts to account for optimum therapy ‘dosages’, and clinical attention to establishing individually‐located levels of ‘self‐efficacy’ or ‘motivation’ are misdirected. The performance of ‘active participation’, rather, should be re‐imagined as a product of diverse, mutually attuned entities. A Virtual Abstract of this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA     

Attending to physical health in mental health services in Australia: a qualitative study of service users’ experiences and expectations

Evidence is unequivocal: the premature death of people with severe mental health problems is attributable primarily to cardiovascular disease, and healthcare provided is often suboptimal. With the overarching aim of improving outcomes, policies and guidelines oblige mental health services and psychiatrists to monitor cardio‐metabolic health of patients and intervene as appropriate. Practice is highly variable; however, with ongoing debate about resourcing and responsibilities dominated by clinicians who have identified disinterest among patients as influencing practice. Seeking to balance discussion, we posed the question ‘what do patients experience and expect of mental health services in relation to their physical health?’ To answer it, we interviewed a convenience sample of 40 service users recruited from a mental health service in Australia, early in 2015. Data were analysed using the framework approach. With few regarding themselves as healthy, participants were commonly concerned about side effects of medication, weight and fitness but rarely mentioned tobacco smoking. Participants’ accounts reinforce extensive research demonstrating variability in attention to physical health in mental health services. Reports by some participants of comprehensive care are encouraging, but widespread uncertainty about reasons for various assessments and denial of requests for management of medication side effects, including weight gain, gives cause for concern. Although participants in this study wanted to improve their health and health‐related quality of life, they acknowledged that their motivation and ability to do so fluctuated with mental health. They expected clinicians to work proactively, especially when symptoms compromised capacity for self‐care, and mental health services to provide or enable access to health‐promoting interventions. Attention should be given, as a matter of priority, to creating conditions (culture and infrastructure) needed to support sustained attention to physical health within services and, importantly, to full engagement of service users in management of their physical health.     

Self‐injury among trans individuals and matched controls: prevalence and associated factors

This study aims to determine the prevalence rate of current non‐suicidal self‐injury (NSSI) among trans individuals, in comparison with a control sample of non‐trans adults. It also aims to compare those with current NSSI and those with no history of NSSI in terms of psychological well‐being, self‐esteem, body dissatisfaction, social support and demographic factors. Participants were 97 adults, diagnosed with transsexualism (ICD‐10, F64.0), attending a national gender clinic in the United Kingdom, and a matched control group. Clinical participants were all engaged on the treatment pathway. Participants completed the following self‐report measures: Self‐Injury Questionnaire – Treatment Related (SIQ‐TR), Symptom Checklist 90 Revised (SCL‐90‐R), Rosenberg Self‐Esteem Scale (RSE), Hamburg Body Drawing Scale (HBDS) and Multidimensional Scale of Perceived Social Support (MSPSS). The results showed that the trans participants had a significantly higher prevalence of current NSSI behaviour than the non‐trans group, with 19% currently engaging in NSSI. Current NSSI was also significantly more prevalent among trans men than trans women. Compared with both trans and non‐trans participants with no history of NSSI, trans participants with current NSSI had significantly higher scores on SCL; significantly lower scores on RSE, HBDS and MSPSS; and were younger in age. The study concludes that trans men, specifically, are more at risk of NSSI than trans women and the general population, even when on the treatment pathway. Those who currently self‐injure have greater psychopathology, lower body satisfaction, lower self‐esteem, lower social support and tend to be younger, than those who do not engage in NSSI.     

The effectiveness of training and support for carers and other professionals on the physical and emotional health and well-being of looked-after children and young people: a systematic review

Looked-after children and young people (LACYP) are recognized as a high-risk group for behavioural and emotional problems, and additional specialist training for foster carers may reduce such problems. This systematic review aimed to identify and synthesize evidence on the effectiveness of additional training and support provided to approved carers, professionals and volunteers on the physical and emotional health and well-being of LACYP (including problem behaviours and placement stability). Searches of health and social science databases were conducted and records were screened for inclusion criteria. Citation and reference list searches were conducted on included studies. Included studies were synthesized and critically appraised. Six studies were included (five randomized controlled trials and one prospective cohort study), all of which focused on foster carers. Three studies reported a benefit of training and three reported no benefit but no detriment. Those reporting a benefit of training were conducted in the USA, and had longer-duration training, shorter follow-up assessment and recruited carers of younger children than studies that reported no benefit of training, which were conducted in the UK. Whether the difference in results is due to the type of training or to cultural or population differences is unclear. The findings suggest a mixed effect of training for foster carers on problem behaviours of LACYP. The evidence identified appears to suggest that longer-duration training programmes have a beneficial effect on the behaviour problems of LACYP, although future research should examine the impact of training durations and intensity on short-medium and longer-term outcomes of LACYP of different ages. Only training and support for foster carers was identified.     

“I don't want to look like an AIDS victim”: A New Zealand case study of facial lipoatrophy

The development of antiretroviral (ARV) drugs to treat HIV has turned what was once a death sentence into a chronic disorder. However, a focus on absence of disease in the form of an undetectable viral load and the dismissal of the so‐called “cosmetic” complications of the disease ignores perceptions of health and well‐being of those living with HIV. Facial lipoatrophy is a stigmatising side effect of treatment for HIV as it betrays the presence of the virus within the body. The study took a longitudinal qualitative approach, interviewing 11 people twice over a period of 1 year on their experience of living with HIV. Two participants were given cameras and asked to take photos which represented what it was like for them to live with this condition and were interviewed four times at four monthly intervals. This paper looks at one man's struggle to conceal or veil his facial lipoatrophy. His story is presented in the form of “selfies” and extracts from in‐depth interviews. It tells of an emotional (ongoing) journey of frustration, anger, excitement, depression and resignation which had a profound effect on his sense of social and psychological well‐being. This suggests a more holistic approach to treating people living with HIV is needed. While an undetectable viral load is indeed vital, it should not be seen as the only essential outcome of treatment.     

“Caregiving is a full‐time job” impacting stroke caregivers' health and well‐being: A qualitative meta‐synthesis

Family caregivers contribute to the sustainability of healthcare systems. Stroke is a leading cause of adult disability and many people with stroke rely on caregiver support to return home and remain in the community. Research has demonstrated the importance of caregivers, but suggests that caregiving can have adverse consequences. Despite the body of qualitative stroke literature, there is little clarity about how to incorporate these findings into clinical practice. This review aimed to characterise stroke caregivers' experiences and the impact of these experiences on their health and well‐being. We conducted a qualitative meta‐synthesis. Four electronic databases were searched to identify original qualitative research examining stroke caregivers' experiences. In total, 4,481 citations were found, with 39 studies remaining after removing duplicates and applying inclusion and exclusions criteria. Articles were appraised for quality using the Critical Appraisal Skills Programme (CASP), coded using NVivo software, and analysed through thematic synthesis. One overarching theme, ‘caregiving is a full‐time job’ was identified, encompassing four sub‐themes: (a) restructured life, (b) altered relationships, (c) physical challenges, and (d) psychosocial challenges. Community and institution‐based clinicians should be aware of the physical and psychosocial consequences of caregiving and provide appropriate supports, such as education and respite, to optimise caregiver health and well‐being. Future research may build upon this study to identify caregivers in most need of support and the types of support needed across a broad range of health conditions.