How to involve hard to reach groups: a consumer-led project with lay carers of people with advanced HIV infection

The identification and provision of support to lay carers is crucial if Health Authorities are to meet the identified health care needs of their populations. This paper outlines in Part One the process for recruiting a defined but potentially hard to reach group, namely lay carers of people with advanced HIV infection, into a project designed as part of an ongoing development in HIV/AIDS education, the specific difficulties encountered, and how these were overcome. Part Two describes how to make a video, highlighting the involvement of carers in all stages of the research and development of a health education video-based resource package. Crucial to overcoming many of the difficulties and in winning the confidence and trust of the carers was the overview throughout of a committed multi-disciplinary Steering Group, the emphasis on confidentiality, the support of colleagues in the six UK centres, and the sensitivity and skills of the university research and production facilitators. This process ensured that the carers as consumers were involved in a continuing and active dialogue through the project.     

Formal support of stroke survivors and their informal carers in the community: a cohort study

This cohort study, aims to explore formal care provision to stroke survivors and their informal carers in the community in the UK. An initial cohort of 105 cohabitant carers of first-time stroke patients was recruited while the stroke patient was in hospital. Structured face-to-face interviews were carried out with carers prior to discharge of the stroke patient home, at 6 weeks after discharge, and 15 months after stroke. Questionnaires included measures of psychological health (CIS-R), physical health (self-rated health), social well-being (relationship quality and Sarason's social support questionnaire), handicap of the stroke survivor (Oxford Handicap Scale) and formal community support (amount of formal support and carer satisfaction). Multiple services were involved with most survivor-carer pairs (mean 5.4; range 2-9; SD = 1.7), and 74% of carers were satisfied with formal support provided. Number of services decreased with time (5.5 versus 4.1, t = 4.201, d.f. = 52, P < 0.001, 95% confidence interval: 0.71-2.01) but not time allocated. Using stepwise linear regression, service provision early after discharge was predicted by: level of handicap, recruitment centre, carer self-rated health, number of informal supporters and other care commitments. Satisfaction was predicted by quality of informal support and activity restriction. Fifteen months after stroke, predictors of formal care were: level of handicap, quality of informal support and previous caring experience. Predictors of satisfaction were: quality of the relationship between the stroke survivor and carer, age and mood. Quality of services was good, but carers lacked information, had insufficient help and were not consulted enough. Carer distress is common, yet not currently a factor influencing support provision. Formal care provided adapts with time reflecting the importance of quality of support from friends and family rather than quantity of informal supporters. These factors should be taken into consideration when planning and providing formal support for stroke survivors and their carers.     

Constructing a new role for family carers and volunteers providing care towards the end of life: an action research approach exploring a new model of hospice care

The objective of this study was to understand the conceptualisation and development of a novel way of providing end-of-life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. A participatory action research design enabled a situational analysis, together with change processes. The study setting was a hospice in the South of England, and its network of wider associates in the local health economy. Participants were purposively sampled to provide relevant information. Data collection (2017–2018) included documents (e.g., meeting minutes) and interviews (individual and group) with external (e.g., GPs) and internal (e.g., staff, managers, volunteers, patients, family carers) stakeholders. These were followed by action cycles conducted by a core action group which explored issues related to family and young carers, the relationship between the main and Cottage Hospices and workforce engagement with the change process. Iterative, inductive, thematic analysis was followed by axial coding facilitated within NVivo. Twenty-six individual and eight follow-up interviews, two group interviews and five discrete action cycles were completed. At the core was a focus on disruption of the norm of professionally provided and mediated care, with three main themes: imagining the future of Cottage Hospice (growing demand, a home-like space, innovative roles for families and volunteers); developing the role of family caregivers (making agreements, meeting needs, social inclusion and the ‘unknown’ expectations) and quality and safety issues (negative perceptions, personalised care and volunteer roles). Change was viewed as both a threat and an opportunity. Cottage Hospice represents the possibility of a truly new way of meeting the needs of dying people and their families, and could act as a template for progressive service developments elsewhere.     

Training as a vehicle to empower carers in the community: more than a question of information sharing

Much confusion still surrounds the concept of empowerment and how it is to be translated into practice within the context of community care for service users and carers. A major limitation has been the tendency to treat empowerment as synonymous with participation in decision-making with little attention given to the 'ecological' model of empowerment where linkages have been found between community participation and measures of psychological empowerment. Training has been suggested as a means through which carers might become empowered , yet to date little empirical evidence has appeared within the literature to support this proposition. This study investigated whether attendance on a training programme to empower carers resulted in improvements in carers' levels of perceived control, self-efficacy and self-esteem as partial measures of psychological empowerment. The findings demonstrated that whereas carers' knowledge of services and participation increased as a result of the programme, no changes were found in measures of carer empowerment. The failure to consider how training needs to be designed in order to achieve changes in individual competence and self-agency are suggested as the most likely explanation for the lack of change observed in carers' psychological empowerment. It is suggested that community care agencies should focus greater energies in determining how the policy objectives of empowerment are to be achieved through training, and in so doing make far more explicit the supposed linkages between training content, design, and its posited impact on individual behaviour or self-agency.     

Costs of caring for a child with cancer: a questionnaire survey

BACKGROUND: Current therapies for childhood cancer have resulted in improved survival rates. However, this has been achieved at considerable price to families, with financial costs including additional expenditure and loss of earnings having been described. The impact of these extra costs for UK families and the extent to which help from charities and government benefits is able to alleviate this is unknown. METHODS: Questionnaires concerning income, expenditure, employment and financial support were completed by 145 parents, recruited from three United Kingdom Children's Cancer Study Group treatment centres. RESULTS: Parents' responses highlighted increased expenditure related mainly to travel to treatment centres. The majority of families (55%) had spent between pound 50-100 in the past week over and above pre-illness expenditure, with a further 18% spending more than pound 100. Many parents (mainly mothers) had either given up or reduced outside employment in order to care for their child and this was associated with further financial problems for 42.7% of families. Despite help from charities and government benefits for the majority of families, extra costs were associated with money worries for 68.3% of families. CONCLUSIONS: Although families are offered timely information about their entitlement to benefits, financial problems are incurred by families of a child with cancer partly because legislation prevents benefits being claimed for the first 3 months of a child's illness - the time when expenses are still at their highest. Furthermore, because benefits are backdated only to the point at which the claim was made, families do not recoup all their costs. Waiving of the 84-day wait period for children undergoing chemotherapy and radiotherapy, and the introduction of weekly bridging payments while a Disability Living Allowance claim is being assessed, would ameliorate this problem and so improve the treatment experience for families.     

The views of carers about support for their family member with an intellectual disability: With a focus on positive behavioural approaches

This qualitative study explored the views of family carers about the support that their adult children with an intellectual disability had received in relation to their behaviour that challenged. There was a particular focus on positive behavioural support (PBS), although some participants spoke more generally in terms of positive approaches. Semi‐structured interviews with eight family carers were analysed using inductive thematic analysis. Four key themes were identified. Good support, of which PBS was an example, was seen as both having reduced behaviours that challenged and having a wider positive impact on the quality of life of the individual and their families. Key features highlighted were: technical knowledge and skill; a strong value base of warmth, acceptance and respect; a collaborative, consistent approach; open communication; and the extension of support to the family carer when needed. It was recognised that there is a need for broad systemic change and for the application of a workforce development model that takes account of the needs of staff, carers and those working in wider systems that have contact with people with an intellectual disability.     

Clinical decision making and the provision of information in PEG feeding: an exploration of patients and their carers' perceptions

Background:  Government health care policy encourages a culture of patient choice and involvement in decision making, although the complexities and challenges involved in fully engaging patients in clinical decision making can be perceived as barriers to effective communication between the professional and patient. The present study aimed to explore the patients and their carers perceptions of the adequacy of the information provided and their subsequent involvement in the decision making process for percutaneous endoscopic gastrostomy (PEG) tube insertion.
Methods:  The study used purposive sampling. A cross-sectional qualitative design was utilised using semi-structured interviews, which were tape recorded. Sixteen patients and 27 carers were interviewed. The interviews were then transcribed verbatim and data analysis was undertaken using thematic analysis.
Results:  Only four patients and 11 carers reported having a choice in the decision for PEG placement, with only four patients and 10 carers, respectively, reporting they received sufficient information regarding the PEG. Poor communication, lack of information and inappropriate information, attitudes of health care professionals and exclusion were key themes for patients.
Conclusions:  Clinicians should develop interdisciplinary and participative practices to agree shared treatment goals and evaluate patient experiences. Consideration should also be given to the use of decision making models; in our opinion, the development of such a model, which supports interdisciplinary and participative approaches to decision making, is urgently required.     

From personal challenge to technical fix: the risks of depersonalised care

Our research focuses on the complexity of needs associated with distress in people with advanced cancer. We have recently completed a large longitudinal survey exploring the interplay between a number of components of distress, including depression, demoralisation, debility and spirituality, amongst a cohort of people living with terminal cancer. Participants were recruited from 25 hospices across the Northwest of England between 2007-2009. A purposive subsample of 27 people was invited to take part in a qualitative interview to explore in greater depth their personal experiences of living with illness and related distress. Holistic-content analysis revealed two emerging themes: 'personal or personalised care' and 'expectations of truth and certainty'. We discuss these themes in the light of Illich's critique of health care as a 'technical response to a personal challenge'. We highlight the need for further work to explore the impact of organisation of care on personalised need and suggest looking to the chronic illness self-management literature for help in developing future palliative care approaches.     

A delay they can ill afford: delays in obtaining Attendance Allowance for older, terminally ill cancer patients, and the role of health and social care professionals in reducing them

Despite a growing interest in holistic care for the terminally ill, financial needs are often not addressed. This is reflected in the fact that some people with a terminal illness are not accessing disability benefits, despite eligibility. The present paper is based on a study investigating delays experienced by cancer patients in obtaining Attendance Allowance (AA) by special rules, and missed opportunities for professionals to assist with claims. The study took place in a hospice where patients were referred to social work professionals for assistance in claiming AA. In each case, the patient had been eligible for some time before the referral. Over a 5-month period, all 22 patients who were referred completed a questionnaire. Data were collected to show their personal characteristics, how they came to be referred for assistance and their level of knowledge of AA. The length of time that people had already been eligible and the time taken to claim were recorded to show the amount of lost benefit. The health and social care professionals whom these patients had seen since becoming eligible were also recorded. A wide range of people experienced delays in accessing AA. Their total lost income ranged from pound 110.60 to pound 1106.00. The median was pound 387.10 and four people died before being awarded AA. Only four patients were fully aware of their eligibility. Every person had seen between one and four professionals since becoming eligible for the benefit, without the meeting resulting in a claim. Increased income aids the management of illness, and information and assistance to claim disability benefits need to be made available in a consistent manner at the earliest opportunity. Health and social care professionals are in a position to provide this. However, changes to the claims process, proposed by the present author, could ensure that AA is received automatically, without delay and without extensive paperwork.     

Investigating the economic case of a service to support carers of people with dementia: A cross‐sectional survey‐based feasibility study in England

Carers contribute essential support to enable people with dementia to continue living within the community. Admiral Nurses provide specialist dementia support for carers of people with dementia, including offering expert emotional support and guidance, and work to join up different parts of the health and social care system to address needs in a co‐ordinated way. The cost‐effectiveness of this service is not clear. We undertook a feasibility study to explore related outcomes and costs for these carers. A cross‐sectional, clustered survey was undertaken in England in 2017, in areas with and without Admiral Nursing (AN). The survey questionnaire included questions on the characteristics of the carers and the person with dementia, outcomes (care‐related quality of life [CRQoL], self‐efficacy and subjective well‐being), use of health and social care services, out‐of‐pocket costs and time spent on informal care. We used different econometric techniques to compare the outcomes and the costs of the carers with and without AN services: linear regression, propensity score matching and instrumental variables analysis. These techniques allowed us to control for differences in observed and unobserved characteristics between the two groups of carers which determined outcomes and costs. We concluded that AN services might have a positive effect on carers' CRQoL, self‐efficacy and subjective well‐being. Furthermore, we found little difference in costs between carers using AN and those using usual care, or in the costs of the people with dementia they care for. Our findings provided an initial indication as to whether AN services could be good value for money. The key limitation of the study was the difficulty in controlling for unobserved characteristics because of the cross‐sectional nature of our observational data. To diminish this limitation, our survey could be used in future studies following carers with and without AN services over time.     

Rethinking respite in Australia: A naturalistic effect study of a multicomponent community program to promote respite knowledge,attitudes and behaviours of carers of people with dementia

‘Rethink Respite’ was a prospective, naturalistic cohort study conducted in the Illawarra-Shoalhaven (NSW, Australia) to improve knowledge, attitudes and uptake of respite strategies in carers of people with dementia. A convenience sample of n = 70 carers were recruited in 2014–15 to establish a baseline for knowledge, attitudes and use of respite for a cohort of carers in the region. Carer perceived need for respite, burden and self-efficacy were also assessed. A co-designed multi-component community-based intervention was subsequently rolled at in the region from 2015 to 2016. The intervention supported: awareness raising media; carer education sessions; access to web and print respite information resources; and an option to participate in a tailored one-on-one in-home coaching program. At program completion, a follow-up survey was administered to the cohort, with n = 44/70 responding. All n = 44 respondents reported participation in and exposure to ‘Rethink Respite’ media, information and education during the intervention period. Eighteen of the 44 also self-selected to receive the active tailored coaching support. At follow-up, few positive results were reported on the assessed carer variables for the cohort over time. However, post hoc sub-group analyses found those who also self-selected to receive active support (provided through coaching) (n = 18), showed improvements to their respite knowledge, attitudes and self-efficacy (p < .05). Intention to use respite, and levels of personal gain from caring in this sub-group also increased (p < .05). In contrast, carers who only participated in the informational/educational aspects of the program (and did not self-select to the respite coaching), experienced negative changes over time to their respite beliefs and ‘role captivity’. Overall, this pilot study suggests that passive respite information and educational strategies are insufficient, without more active supports (tailored respite coaching) to address observed carer decline over time. Future research should seek to replicate these results using a larger sample and an experimental design.     

The personal development of mothers of terminal cancer patients: how Japanese women change through the experience of caring for and losing their children to cancer

The author interviewed 57 mothers who had lost children to cancer about their experiences concerning their children's illness and death. These mothers became their children's main caretakers because they felt responsible and unable to count on others. They maintained emotional stability while interacting with their children and worked to protect their children from mistakes made by health care professionals. These experiences made many mothers tougher. After their children died, they had to form a different kind of relationship to their children to overcome their grief. This process compelled the mothers to reconsider issues concerning life and death and changed their fundamental values.     

Constructing illness: how the public in eight Western nations respond to a clinical description of "schizophrenia"

According to classic and contemporary social theory, the community is crucial to how individuals respond to the onset of health problems. Cultural response to symptoms provides the foundation for lay diagnosis; offers a gauge for marking individual and societal health literacy; and reflects the cultural embeddedness of modern medical knowledge. Using data collected between 2004 and 2007 from the Stigma in Global Context – Mental Health Study (SGC-MHS) on the recognition of schizophrenia from vignettes describing individuals meeting DSM-IV criteria, we examine the nature and correlates of lay diagnosis. Focusing on Western societies in the SGC-MHS, we ask three questions regarding problem recognition in Bulgaria (N = 255), Cyprus (N = 253), Germany (N = 382), Hungary (N = 352), Iceland (N = 291), Spain (N = 327), Great Britain (N = 289), and the United States (N = 449): (1) What is the cross-national variation in recognition of schizophrenia as a mental illness? (2) Is lay diagnosis associated with individuals’ socio-demographic characteristics and/or their evaluation of underlying causes? (3) Are lay diagnoses likely to shape the nature and direction of the illness career? We find lay diagnosis of “mental illness” to be high across these Western nations with some, though modest, difference across countries. Variation for the more specific diagnosis of “schizophrenia” is greater, though fairly consistent in country ordering. Lay diagnoses are shaped most consistently by attributions, inconsistently by socio-demographics, and generally associated with respondents’ treatment recommendations and expected outcomes. In light of assumptions about public beliefs and knowledge that often underlie research, community efforts, clinical programs, and health policy, these findings suggest that a greater understanding of the complexities of lay diagnosis is warranted.     

Networks of care: how Latina immigrants find their way to and through a county hospital

The purpose of this paper is to explore qualitatively the principal problems that Latino women face in getting health care for themselves and their families, how their experiences with the health care system affect them, and how they often overcome obstacles to get health care. Focus group and individual interviews with Latinas in a public hospital in Los Angeles County revealed that Latinas faced many challenges in getting health care for themselves and their families, and, as a result, many felt embarrassed, scolded, helpless, and discouraged from seeking care. Yet they overcame enormous obstacles to get into the system through solidarity with other Latinas, either friends or extended family, and connections with key health service personnel. These networks of care enabled Latinas to access a complicated health care system and offer lessons for providers and policy-makers concerned with improving the delivery of care to this population.