'Jumping through hoops': parents' experiences with seeking respite care for children with special needs

Background   Respite care may act as a means to reduce stress and fatigue in people caring for a dependent who has a disability. Despite this, a variety of barriers may exist to obtaining such services. This study explored caregivers' experiences seeking respite care for their children with special needs within a province in Canada.
Methods   Caregivers were recruited from two agencies providing respite care for children with fetal alcohol spectrum disorders and other mental health and developmental difficulties. In total, 10 caregivers participated in in-depth individual interviews. A constructivist grounded theory approach was employed in the design and analysis of the data.
Results   Caregivers discussed their frustrations with the process of finding and obtaining respite care, a course of action described as 'jumping through hoops'. This construct was composed of subcategories emphasizing the complexity of 'navigating the system', the bidirectional process of 'meeting the requirements' and the challenges of 'getting help'.
Conclusions   The collective experiences of these caregivers point to the need for more flexibility and co-ordination of respite care services for children with special needs.     

Why carers of people with dementia do not utilise out‐of‐home respite services

While many people with dementia require institutional care, having a co‐resident carer improves the likelihood that people can live at home. Although caregiving can have positive aspects, carers still report a high need for respite. Despite this need, the use of respite services for carers of people with dementia is often low. This article investigates carer beliefs regarding out‐of‐home respite services and why some carers do not utilise them. A total of 152/294 (51.7%) carers of community‐dwelling people with dementia (NSW, Australia) who were sent a survey completed it (November 2009–January 2010). Despite reporting unmet need for both services, 44.2% of those surveyed were not utilising day respite and 60.2% were not utilising residential respite programmes. Binary logistic regression models were used to examine factors associated with non‐use using the Theory of Planned Behaviour within an expanded Andersen Behavioural Model on a final sample of 113 (due to missing data). The model explained 66.9% of the variation for day centres, and 42% for residential respite services. Beliefs that service use would result in negative outcomes for the care recipient were strongly associated with non‐use of both day care [OR 13.11; 95% CI (3.75, 45.89)] and residential respite care [OR 6.13; 95% CI (2.02, 18.70)] and were more strongly associated with service non‐use than other predisposing, impeding and need variables. For some carers who used services despite negative outcome beliefs, the benefits of respite service use may also be diminished. To improve use of out‐of‐home respite services in this vulnerable group, service beliefs should be addressed through service development and promotion that emphasises benefits for both carer and care recipients. Future research utilising behavioural service models may also be improved via the inclusion of service beliefs in the study of health and social service use.     

A review of the factors associated with the non‐use of respite services by carers of people with dementia: implications for policy and practice

The use of respite services by carers has been shown to extend the length of time people with dementia can remain living in the community with family support. However, the use of respite services by informal carers of people with dementia is often low and does not appear to match carer need. To better understand how to address carers' unmet need for respite, the factors that impede respite service use must be identified. To achieve this, a narrative synthesis of published academic literature (1990–2011) was undertaken regarding factors associated with not utilising different types of respite services utilising Anderson's Behavioural Model of Service Use. The review reinforces the importance of the assessment and matching of services to the needs of individual carers and care recipients at the local level. It also highlights the need to move beyond care pathways for individuals. To support respite use there is a need for local action to be augmented at a community or population level by strategies to address attitudinal and resource barriers that influence sub‐groups of the carer population who may be more vulnerable to service non‐use.     

Evaluation of a West Australian residential mental health respite service

Family members continue to be the predominant providers of support, care and accommodation for loved ones with mental health issues, and empirical studies suggest that accessing mental health respite can be helpful for both carers and consumers. However, the availability of, and access to, this respite in Australia is far from optimal. Major issues have also been identified such as low utilisation, the inappropriate and inflexible nature of services and the inability of services to respond to situations where multiple needs exist. This article presents findings from a small evaluation of a pilot residential respite service. Semi‐structured interviews were conducted with eight family members/carers and four consumers using the service, and five service providers. In addition, anonymised sociodemographic information about all users of the service in the first 9 months of its operation were analysed. Reflecting the current limitations around respite options, the majority of family members/carers and consumers were appreciative of, and satisfied with, the service. The research highlighted issues such as availability and suitability of respite, particularly when consumers had multiple and unmet needs. Mental health residential respite is often a stopgap in crisis situations and intersects with the difficulty of planning respite and shortages in affordable supported accommodation. Furthermore, the ramifications of individualised funding for people with “psychosocial disability” in the new Australian National Disability Insurance Scheme (NDIS) remain unclear. While family members and carers may benefit indirectly from NDIS funding, it is especially important at this time that the need for more suitable, recovery‐oriented respite services is highlighted.     

Mental health carers’ experiences of an Australian Carer Peer Support program: Tailoring supports to carers’ needs

Carer Peer Support Workers (CPSWs) are people who have lived experience as carers/family members of persons with a mental illness, and are employed to provide support to other carers/family members. This qualitative study aimed to explore carers’ experiences within a community‐based CPSW pilot program in an Australian mental health service. Semi‐structured phone interviews were conducted with 20 carer participants in 2015, 5–10 months following their last contact with the service. Thematic analysis uncovered that carers were generally positive about the CPSW's emotional support, practical support, shared lived experience and mutual understanding, and the “ripple effect” the support had on service users. Some carers, on the other hand, felt that the support was unnecessary; either because they believed that it did not have a lasting effect, the focus should have been on the service user, or that they had previously received enough support. Nevertheless, the study highlighted how mental health services could best utilise and benefit from CPSWs. Moreover, to be most useful, the nature of the carer peer support work should be tailored to the specific needs of the carers; which may vary according to their culture, years of caring experience, and previous experiences with mental health services.     

Evaluating the effects of a multicomponent support service for people recently diagnosed with dementia and their carers: A qualitative study

Introduction

Although prior research has provided an understanding of the needs of people living with dementia (PLWD) and their carers, less is known about how tailored multicomponent interventions impact their lives. This study explored the effect of providing ongoing support to people who had been recently diagnosed with dementia and to their carers.

Methods

We conducted interviews with a convenience sample of key stakeholders: 11 interviews with people who had dementia and their familial carers (n = 14) and six interviews with staff and other practitioners involved with the service (n = 13). Inductive thematic analysis was performed on the data.

Results

Four themes were developed: the service as a source of respite, peer support, activities as facilitators of emotional wellbeing, and social support. The service was well-respected, credible, and trusted and was highly valued by practitioners, clients, and carers. It had a clear role in supporting PLWD and their carers. Peer support provided through the service contributed to greatly reducing self-reported carer burden.

Conclusion

Recommendations arising from this study include offering holistic services to PLWD and their carers, developing activities for men, raising awareness of services among practitioners working with PLWD, and improving partnerships between services and agencies working with older people.

Patient or Public Contribution

Service users were consulted on the themes generated from the data and were asked to provide feedback to help guide the interpretation of the data and ensure this reflected their views and experiences.     

Information‐sharing with respite care services for older adults: a qualitative exploration of carers' experiences

Respite services play an important role in supporting older adults and their carers. When an older person is unable to fully represent themselves, provision of respite care relies on effective information‐sharing between carers and respite staff. This study aimed to explore, from carers' perspectives, the scope, quality and fit of information‐sharing between carers, older people and respite services. An explorative, cross‐sectional qualitative study involving a purposive sample of 24 carers, recruited via carer support groups and community groups in voluntary organisations, was undertaken in North East Scotland. Data were collected from August 2013 to September 2014, with participants taking part in a focus group or individual interview. Data were analysed systematically using the Framework Approach. The multiple accounts elicited from carers identified how barriers and facilitators to information‐sharing with respite services changed over time across three temporal phases: ‘Reaching a point’, ‘Trying it out’ and ‘Settled in’. Proactive information‐sharing about accessibility and eligibility for respite care, and assessment of carers' needs in their own right, were initially important; as carers and older people moved on to try services out, time and space to develop mutual understandings and negotiate care arrangements came to the fore; then, once shared expectations had been established, carers' chief concerns were around continuity of care and maintaining good interpersonal relationships. The three temporal phases also impacted on which modes of information‐sharing were available to, and worked best for, carers as well as on carers' perceptions of how information and communication technologies should be utilised. This study highlights the need for respite staff to take proactive, flexible approaches to working with carers and to make ongoing efforts to engage with carers, and older people, throughout the months and years of them utilising respite services. Information and communication technologies have potential to enhance information‐sharing but traditional approaches will remain important.     

Nursing the patient with developmental disability in hospital: roles of paid carers

Our aim in this narrative inquiry was to understand the roles of paid carers supporting adults with developmental disability and complex communication needs in hospital, from the perspectives of 15 paid carers, 15 adults with developmental disability, and 15 hospital nurses. Results demonstrated that paid carers have an important role in supporting the adult with disability, providing information, delivering basic care, and facilitating communication. Stories reflected paid carer volunteerism; lack of orientation of carers and hospital staff to the paid carers' roles; blurred role boundaries between paid carers, family carers, and nurses; and paid carers being uncertain about their own responsibilities for staff and patient safety. New policies and practice guidelines are needed to guide both health and disability services in clarifying paid carer roles and role boundaries, and to enable paid carers and hospital staff to work together effectively on the ward in the care of adults with developmental disability.     

Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia

Objective: To estimate service demand (willingness to seek or use services) for respite care among informal, primary carers of people with a psychological disability and to describe their characteristics. Methods: Analysis of data from the household component of the 2009 Survey of Disability Ageing and Carers (n=64,213 persons). Results: In Australia in 2009, 1.0% of people aged 15 years or over (177,900 persons) provided informal, primary care to a co‐resident with a psychological disability. One‐quarter (27.2%) of these carers reported service demand for respite care, of whom one‐third had used respite services in the past three months and four‐fifths had an unmet need for any or more respite care. A significantly greater percentages of carers with service demand for respite care spent 40 or more hours per week on caregiving, provided care to a person with profound activity restrictions and reported unmet support needs, compared to carers without service demand. Lack of suitable, available respite care models was a barrier to utilisation. Conclusions: Findings confirm significant service demand for, and under‐utilisation of, respite care among mental health carers. Implications: Increased coverage of respite services, more flexible service delivery models matched to carers’ needs and better integration with other support services are indicated.     

Perceptions of unmet needs for community social care services in England. A comparison of working carers and the people they care for

Previous UK research has found expressed unmet need for services by unpaid working carers and among disabled and older people. There are, however, suggestions from research that views on unmet needs for services differ between carers and care‐recipients. Working carers in the UK say that the care‐recipient is sometimes reluctant to accept services and the few international comparative dyad studies that have been carried out find that carers perceive higher unmet need than care‐recipients. Recent policy discussions in England have also recognised that there may be differences of opinion. We collected data in 2013 from working carer/care‐recipient dyads in England about perceived need for services for the care‐recipient, disability, unpaid care hour provision and individual and socio‐demographic characteristics. We find that care‐recipients as well as their carers perceive high unmet need for services, although carers perceive higher unmet need. For carers, unmet need is associated with the disability of the carer‐recipient and being the daughter or son of the care‐recipient; for care‐recipients it is associated with unpaid care hours, carers’ employment status and carers’ health. The majority of dyads agree on need for services, and agreement is higher when the working carer provides care for 10 hours or more hours a week. Services for care‐recipients may enable working carers to remain in employment so agreement on needs for services supports the implementation of legislation, policy and practice that has a duty to, or aims to, support carer's employment.     

Enhancing primary care support for informal carers: A scoping study with professional stakeholders

Informal carers (i.e. people who provide unpaid care to family and/or friends) are crucial in supporting people with long‐term conditions. Caring negatively impacts on carers’ health and experiences of health services. Internationally and nationally, policies, legislation, professional guidance and research advocate for health and care services to do more to support carers. This study explored the views of health and social care providers, commissioners and policy makers about the role and scope for strengthening health service support for carers. Twenty‐four semi‐structured interviews, with 25 participants were conducted, audio‐recorded, transcribed verbatim and analysed by thematic analysis. Three main themes emerged: (a) identifying carers, (b) carer support, and (c) assessing and addressing carer needs. Primary care, and other services, were seen as not doing enough for carers but having an important role in identifying and supporting carers. Two issues with carer identification were described, first people not self‐identifying as carers and second most services not being proactive in identifying carers. Participants thought that carer needs should be supported by primary care in collaboration with other health services, social care and the voluntary sector. Concerns were raised about primary care, which is under enormous strain, being asked to take on yet another task. There was a clear message that it was only useful to involve primary care in identifying carers and their needs, if benefit could be achieved through direct benefits such as better provision of support to the carer or indirect benefit such as better recognition of the carer role. This study highlights that more could be done to address carers’ needs through primary care in close collaboration with other health and care services. The findings indicate the need for pilots and experiments to develop the evidence base. Given the crucial importance of carers, such studies should be a high priority.     

A questionnaire to measure satisfaction with community services for informal carers of stroke patients: construction and initial piloting

Stroke affects 120 000 people each year in the UK and is the most common cause of adult-onset disability. Most stroke patients are cared for at home by informal carers. Support for these carers is provided by the community services, but although single-item measures have shown that there is a relatively high level of dissatisfaction with those services, there is no specific satisfaction measurement instrument. The present study aimed to construct and initially validate a questionnaire to measure carers' satisfaction with community services for clinical and research purposes. Qualitative interviews with a purposive sample of informal carers of stroke patients identified via stroke unit discharge records gave information about content, context and language. Together with information from the carers' literature, this formed the basis of the questionnaire. A self-completion questionnaire proved unacceptable to carers with a very poor response rate (20%). Face-to-face interviews were more acceptable, with the questionnaire taking approximately 10 minutes to administer. All carers approached agreed to take part and only three carers dropped out from follow up, all because of reasons not related to the study. Initial validity and reliability testing with a sample of 44 carers identified through stroke groups and general practice showed good correlation with a single-item satisfaction measure (RHO = 0.797), test-retest reliability (RHO = 0.885) and inter-rater reliability (RHO = 0.868), and a high degree of internal consistency (Cronbach's alpha = 0.859). Further validation with larger and more diverse groups of informal carers is needed before the questionnaire can be considered to be a robust and reliable tool. Factor analysis revealed seven factors: information about community support and involving the carer; amount, appropriateness and coordination of services; information about stroke; speed of change and concern about the carer; listening to the carer and being heard; problem management; and confidence in and accuracy of information. These factors have marked similarities to those found in the field of patient satisfaction with community services.     

Queensland extended care services for people with severe mental illness and the role of occupational therapy

Background:  People with serious mental illness in Queensland who require extended rehabilitation may be treated in extended inpatient mental health services. Two of these extended inpatient services, hospital and community-based 'Extended Treatment and Rehabilitation Units (ETRUs) and Community Care Units (CCUs)', are described, including the aims, objectives, philosophy and service delivery.
Methods:  A quality project involving occupational therapists working in these settings, as well as a consumer and carer, provides different perspectives concerning these relatively new health services in Queensland.
Results:  Two main occupational therapy roles were identified: case management and occupational therapy-specific roles (including assessment and intervention). The consumer and carer perspective is also presented.
Conclusion:  These services provide a positive option for people with high levels of functional disability as a result of mental illness and also for their carers. They provide environments with many exciting opportunities and challenges for occupational therapists working in mental health.     

Informal care: the views of people receiving care

Informal care is perceived to be the best option for people who require assistance to look after themselves. National and international studies of informal care have focused on the carer, not on the care provided, or the needs and experiences of the care recipients. In the present study, 55 people receiving informal care (21 males and 24 females, mean age = 67.6) were surveyed to determine the type of assistance that they receive, perceptions of the quality of their care, feelings about being looked after by a carer and their perceptions of the services which would be useful. A random sample of 531 households were selected as part of a larger study into informal care in the west of Ireland. A total of 98 carers were identified and 55 of the people they looked after were well enough to participate in the study. Over two-thirds of carers assisted with household chores (e.g. cleaning, preparing meals and shopping). Other activities which carers assisted with included keeping the person safe from household accidents (62%), personal care (42%), and dressing and undressing (31%). Whilst most were very satisfied with the quality of care, a minority reported dissatisfaction, and stated that their carer showed signs of anger and frustration. Common concerns related to the health of the carer, their safety when the carer is not available and the cost of being cared for. Financial support for the person receiving care and the carer were the main priorities for these individuals. The present study points to a need for greater involvement of care recipients in planning services relating to informal care, and support and access to health professionals for people receiving care. People receiving care are also concerned about the level of financial support for themselves and their carers.     

Support for Australian carers from community pharmacy: Insight into carer perspectives of a novel service

The feasibility of an individualised carer support service delivered in community pharmacies was assessed from the perspective of carer participants using a pre–post questionnaire and semistructured interviews. Eligible pharmacies were required to offer a medication management service relevant to carers and have a semiprivate space for conversations. Carers were required to self‐identify as an unpaid support person for someone with a chronic condition or disability. Between September 2016 and March 2017, staff from 11 community pharmacies in South‐East Queensland, Australia were trained, and provided with ongoing mentoring from a pharmacist and carer to support service implementation. Identification of carers and support to achieve a personal and care‐giving goal were key features of the service. Questionnaires included the EQ‐5D‐3L, the Bakas Caregiving Outcomes Scale, and questions relating to goal achievement, carer roles, and responsibilities. Seven follow‐up carer interviews were undertaken between March and May 2017 and analysed thematically. Pre–post questionnaires were available for 17 carers (one withdrew, two incomplete). Of the 29 goals set, 10 were achieved and 14 partially achieved. EQ‐5D‐3L scores were unchanged, while 7 of the 15 items comprising the Bakas score improved (p < 0.05). Carer service evaluation was generally favourable, and these two main interview themes were the impact of caring and pharmacy experience. The impact of caring, while variable, was significant. Pharmacy experiences were mostly positive and the opportunity for carers to further engage with pharmacy staff was appreciated. The service was feasible and initial reported benefits to carers may support further research potentially in terms of a larger controlled trial.     

'It's very difficult to get respite out here at the moment': Australian findings on end-of-life care for Indigenous people

Whilst access to respite care has been found to represent an important source of support for terminally ill patients and their families, the availability of these services to Indigenous Australians has to date remained undocumented. This potential need for respite in Indigenous communities was explored as part of a National Health and Medical Research Council (NH&MRC) funded study designed to develop an innovative model for Indigenous palliative care. The data needed for model development were collected through a series of open-ended, qualitative interviews conducted with a cross-section of consumers and health professionals within the Northern Territory, Australia. The findings reflected a serious need for Indigenous respite services, coupled with a severe deficiency in the present availability of these services, especially within rural and regional areas. This lack of local respite services was documented to be negatively impacting upon the ability of carers to fulfil their caring duties and was found placing undue physical, emotional and economic stress upon carers, patients and their families. Furthermore, the lack of access to local respite services documented was found to be forcing rural and regional patients to relocate to metropolitan areas away from the family, community and land to which strong ties are held. The lack of Indigenous respite services was also found to obstruct patients' and carers' wishes for death to occur in the local community, rather than in far away cities. Significant obstacles were found to be hindering the provision of respite care to Indigenous Australians, namely beliefs about families looking after their own, resource restrictions, limited staff availability in local areas, as well as problems associated with hostel use in metropolitan areas. The conclusions drawn from this study suggest the importance of tackling the obstacles preventing local respite services being established in areas close to where patients and carers live.     

Difficulties experienced by carers from non-English-speaking backgrounds in using health and other support services

Abstract: The proportion of the Australian population from non-English-speaking backgrounds is increasing (particularly among the elderly, who are more likely to be disabled), but their use of health services and institutions is proportionately lower than that for other Australians, and many care for a family member with a disability or illness at home. The study objective was to document the experiences of such carers in using health and other support services in order to understand the reasons for underutilisation. This study differs from most other carer studies in concentrating on carers with little or no English, and by using a semistructured interview that enabled carers to describe their experiences and attitudes more openly. Forty women carers were interviewed, with bilingual interviewers or interpreters being used where necessary. Interviews were tape-recorded and content-analysed. The services used, sources of information and referral, and the reasons for not using a service were identified. Some of the difficulties experienced in using services were common to many carers, irrespective of background, whereas others related specifically to English language deficits and cultural differences. Carers were reluctant to institutionalise a family member, despite their own health problems, emphasising the need for greater support from existing and expanded services to enable the relative to be cared for at home.