Caregiving work: The experiences and needs of caregivers in Australia

A considerable evidence base exists demonstrating the high prevalence of family caregiving in the community; however, there is a paucity of in‐depth research examining the impact of family caregiving on the living and employment needs of those providing this unpaid service. This study employed a qualitative interview design with purposive sampling to examine the experiences of family caregivers, in order to examine how family caregiving decisions are made, the nature and challenges of caregiving work, and living and work supports that may enhance the caregiving experience. A sample of 12 adults providing care and assistance to family members with a range of disabilities, chronic conditions and long‐term illnesses were interviewed. The results showed that family caregivers ‘fall into’ the caregiving role and often continue to provide care indefinitely without pay and with little or no financial support from others. In describing the best aspects of their experience many caregivers talked about helping their care recipient remain in their home and maintain their independence. In describing the worst aspects of their experience, all referred to the living and financial challenges of the caregiving work, and many highlighted the impact of their caregiving work on their employment and career needs. In conclusion, there is a need for public policies, programs and health services in Australia to better respond to the living, financial and support needs of family caregivers as health service providers, as well as their employment, development and career needs which are seriously impacted upon by caregiving work.     

Patients' perceptions and experiences of patient‐centred care in dietetic consultations

Background

Patient‐centred care (PCC ) is essential to quality healthcare. However, there is a paucity of research on PCC in dietetics, particularly regarding patients' experiences and perspectives of PCC . We aimed to enhance our understanding of PCC in dietetics by exploring patients' perceptions and experiences of PCC in individual dietetic consultations.

Methods

The present study used qualitative methods, situated in a constructivist–interpretivist paradigm. Maximum variation purposive sampling was used to recruit English speaking adult participants who had participated in ≥1 dietetic consultations for nutrition care. Individual semi‐structured interviews explored participants' perceptions and experiences of PCC in dietetic consultations. Data were analysed thematically.

Results

Eleven patients were interviewed between September and November 2016. Four overarching themes emerged: (i) fostering and maintaining caring relationships; (ii) delivering individualised care; (iii) enabling patient involvement; and (iv) taking control of one's own health.

Conclusions

PCC is important to patients. Thus, there is opportunity for dietitians to enhance the care they provide by adopting patient‐centred practices. As the first study of its kind, these findings can inform future dietetic practice, education and research by contributing patients' perspectives of PCC . By understanding patients' unique needs and preferences, dietitians can better align their practice with a patient‐centred approach. Furthermore, these findings are useful for informing future dietetic research and education.

     

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.     

Assessing care‐giving demands,resources and costs of family/friend caregivers for persons with mental health disorders: A scoping review

As mental health (MH) care has shifted from institutional settings to the community, families and friends are responsible for providing the majority of the care at home. The substantial literature on the adverse effects experienced by caregivers has focused mainly on psychological morbidity. Less attention has been paid to how caregivers for persons with MH disorders interact with larger social systems and the impacts of factors such as financial strain, lost time from leisure activities, and the availability of health and social services. We conducted a scoping review of MH and other caregiver questionnaires published between 1990 and 2016 to determine whether they addressed four key domains: caregiver work demands, resource needs, resource utilisation and costs. A range of health and social care databases were searched, including MEDLINE and Health and Psychosocial Instruments. After screening for relevance and quality, our search identified 14 instruments addressing elements related to one or more of our domains. Because these instruments covered only a small portion of our domains, we conducted a second targeted search of the general care‐giving literature and consulted with experts, identifying an additional 18 instruments. A total of 32 questionnaires were reviewed, 14 specific to care‐giving for mental health problems and 18 for other health conditions. Our search identified instruments or items within instruments that assess constructs in each of our domains, but no one instrument covered them completely. Additionally, some constructs were evaluated in detail and others only addressed by single items. While these instruments are helpful for moving measurement beyond the psychological impacts of care‐giving, our results serve only as an initial guide. Additional methodological work is needed to more comprehensively measure the impact of care‐giving for individuals with MH disorders and to contribute to the development of more meaningful and effective policies and programmes.     

Perceived needs of carers of people with psychosis: An Australian longitudinal population‐based study of caregivers of people with psychotic disorders

Studies have documented the perceived needs of carers of people with psychosis but most recruitment has utilised convenience sampling resulting in limited understanding of carers’ needs. This longitudinal study was conducted within the second Australian prevalence study of psychosis, aiming to obtain generalisable findings regarding perceived needs of carers of people with psychosis. Semi‐structured interviews were conducted with 98 carers of people with psychosis recruited in the Australian prevalence study of psychosis. Seventy‐eight of the carers were reinterviewed 1 year later to measure changes in their perceived needs. Correlational and paired T tests were conducted to identify relationships between perceived needs and carer's health and well‐being, and changes in levels of perceived needs over time. Qualitative responses were structurally coded by segmentation according to the Carers’ and Users’ Expectations of Services—Carer version. Thematic analysis of common words and phrases was undertaken to identify key themes concerning carers’ perceived needs. There was minimal improvement in carers’ perceived needs over time and their needs were closely related to their perception of their own social connectedness, psychological health and quality of life. Five themes were identified: Greater involvement of carers in the treatment plan, provision of relevant information to carers, multiple biopsychosocial support for carers, well‐being and independence interventions for people with psychosis, and choice to care and alternate caring arrangements. Although policy recognises the need to support carers, findings show that focused interventions are required to address carers’ perceived needs more holistically in current mental health services. To support carers’ recovery, services need to include carers in treatment planning, and consider ways to address their needs and improve their own health and well‐being.     

The end of life and the family: hospice patients’ views on dying as relational

The end of life is a highly emotive and critical period in the life course and families often play a central role during this time. Despite significant sociological work on dying as a relational experience, there has been little exploration of the significance of contemporary family structures and relations. In this article, drawing on the accounts of twenty hospice in‐patients, we explore how the end of life (in this case within an in‐patient unit) is mediated by family dynamics and expectations. Participants’ accounts reveal a range of interpersonal experiences, including: pressures and strains on families and patients; differentiation in family responses to and involvement in the dying process; and tensions between individual and family preferences/desires. We argue that family dynamics strongly influence individual experiences near death and that the focus on individual preferences and the management of disease in palliative care contexts must be augmented with sophisticated and nuanced understandings of the family context. We suggest that sociological conceptual explanations of shifts in social and family life, such as individualisation and ontological security, may also help us better understand the ways families approach and respond to the dying process.     

Exploring identity in the ‘figured worlds’ of cancer care‐giving and marriage in Australia

Following changes in the structure and funding of the Australian medical system, patients have become ‘consumers’ or ‘clients’. Family and friends have become ‘carers’ or ‘caregivers’, signifying their increased responsibilities as patients move from hospitals to communities. While policy makers embrace the term ‘carer’, some argue that the title is not widely recognised and has disempowering connotations. This paper examines spouses’ reflections on the term ‘carer’ based on qualitative interviews with 32 Australians caring for a spouse with cancer from a study conducted between 2006 and 2009. Recruitment involved survey and snowball sampling. Following a grounded theory approach, data collection and analysis were performed simultaneously. Using Holland and colleagues’ sociocultural ‘identity as practice’ theory and a thematic approach to analysis, findings depict identification with the ‘spouse’ and ‘carer’ label as relationally situated and dependent on meaningful interaction. Although others argue that the term ‘carer’ is a ‘failure’, these findings depict identification with the label as contextual, positional and enacted, not fixed. Furthermore, and of most significance to practitioners and policy makers, the title has value, providing carers with an opportunity to position themselves as entitled to inclusion and support, and providing health professionals with a potential indicator of a spouse's increased burden.     

Effects of a 4‐week transitional care programme for discharged stroke survivors in Hong Kong: a randomised controlled trial

Stroke rehabilitation involves care issues concerning the physical, psychosocial and spiritual aspects. Hospital‐based rehabilitation has its limitations because many of the care issues only emerge when patients return home. Transitional care models supporting patients after discharge from the hospital have proved to be effective among chronically ill patients, but limited studies were conducted among stroke survivors. This study was a randomised controlled trial conducted to test the effectiveness of a transitional care programme (TCP) which was a nurse‐led 4‐week programme designed based on the assessment–intervention–evaluation Omaha System framework. Between August 2010 and October 2011, 108 stroke patients who were discharged home, able to communicate, and had slight to moderate neurological deficits and disability were randomised into control (n = 54) and intervention groups (n = 54). Data on the patient‐related and clinical outcomes were collected at baseline, 4 weeks when the TCP was completed and 8 weeks after discharge from hospital. Repeated measures analysis of variance with intention‐to‐treat strategy was used to examine the outcomes. There were significant between‐group differences in quality of life, the primary outcome measure of this study, in both physical (F(1, 104) = 10.15, P = 0.002) and mental (F(1, 104) = 8.41, P = 0.005) domains, but only the physical domain achieved a significant time × intervention interaction effect (F(1, 103) = 7.73, P = 0.006). The intervention group had better spiritual–religion–personal measures, higher satisfaction, higher Modified Barthel Index scores and lower depression scores when compared with the control group. They also had lower hospital readmission and use of emergency room rates, but only the use of emergency room had significant difference when compared to control. This study is original in testing a transitional model among stroke patients discharged from hospital. The TCP shares common features that have been proved to be effective when applied to chronically ill patients, and the duration of 4 weeks seems to be adequate to bring about immediate effects.     

Actions to influence the care network of home‐dwelling elderly people: A qualitative study

Positive impact of care networks of home‐dwelling elderly people may be based on several network mechanisms: navigation to resources, negotiation between participants and contagion of behaviours. Little is known about actions of participants—elderly people, informal caregivers or formal care providers—to activate such mechanisms and generate support. Aim of this study was to identify actions in relation to these network mechanisms. A cross‐sectional qualitative study of 48 interviews with home‐dwelling elderly people, informal caregivers and formal care providers in the eastern parts of the Netherlands was conducted between March and September 2016. A framework analysis on network mechanisms categorised actions. Actions were reviewed by network party and compared between networks to explore relations between actions and networks. Results showed that participants navigated through existing relations to seek support. Actions on negotiation were aimed at ameliorating existing relations. Few examples and no actions on contagion of behaviours were found. Actions seemed driven by incidents and existing relations. Elderly people rarely initiated actions, informal caregivers felt hampered by their position in the network. Consistent patterns of relations between actions and network characteristics did not emerge. We concluded that the full potential of network‐based support of elderly people is probably underused. Particularly promising seem: navigating the neighbourhood for new informal care, using opposite opinions as a catalyst for change and bringing quality of life and dilemma's into dialogue in the network.     

Post‐discharge medicines management: the experiences,perceptions and roles of older people and their family carers

BackgroundMultiple changes are made to older patients’ medicines during hospital admission, which can sometimes cause confusion and anxiety. This results in problems with post‐discharge medicines management, for example medicines taken incorrectly, which can lead to harm, hospital readmission and reduced quality of life.AimTo explore the experiences of older patients and their family carers as they enacted post‐discharge medicines management.DesignSemi‐structured interviews took place in participants’ homes, approximately two weeks after hospital discharge. Data analysis used the Framework method.Setting and participantsRecruitment took place during admission to one of two large teaching hospitals in North England. Twenty‐seven participants aged 75 plus who lived with long‐term conditions and polypharmacy, and nine family carers, were interviewed.FindingsThree core themes emerged: impact of the transition, safety strategies and medicines management role. Conversations between participants and health‐care professionals about medicines changes often lacked detail, which disrupted some participants’ knowledge and medicines management capabilities. Participants used multiple strategies to support post‐discharge medicines management, such as creating administration checklists, seeking advice or supporting primary care through prompts to ensure medicines were supplied on time. The level to which they engaged with these activities varied.Discussion and conclusionParticipants experienced gaps in their post‐discharge medicines management, which they had to bridge through implementing their own strategies or by enlisting support from others. Areas for improvement were identified, mainly through better communication about medicines changes and wider involvement of patients and family carers in their medicines‐related care during the hospital‐to‐home transition.