Formal Respite Research Articles

Overcoming the challenges of caring for a child with foetal alcohol spectrum disorder: a Pilbara community perspective.

Participants (n=7) in this qualitative study were recruited through a FASD diagnostic clinic and family support organisation in the Port Hedland region of Western Australia. Eligible participants were previous or current caregivers of children with a FASD diagnosis or risk of FASD and provided informed consent before participating in semi-structured interviews using a phenomenological approach. The interviews were 30-60 minutes in duration and were audio-recorded and transcribed verbatim using NVivo 11 computer software, with all identifying information removed. The caregivers provided rich, descriptive narratives revealing the challenges and stress they experienced when they first started caring for their child with FASD. Caregivers articulated how they developed and adapted strategies through trial and error that enabled them to better manage disruptive behaviours and maintain a stable, calm environment. A thematic analysis revealed four major themes: the importance of routine and structure for the child and family, the importance of family support, the benefits of peer support groups and various social issues impacting children's development. Maintaining routine and structure had helped many caregivers mitigate stress and reduce disruptive behaviours, and family support allowed caregivers some respite whilst ensuring children remained connected to their biological families and culture. The caregivers also shared that peer support groups would be beneficial to share stories and strategies with others experiencing similar circumstances. Broader societal issues requiring attention at the community level were discussed, in addition to caregivers having awareness of the complexities impacting the children's biological families. The caregivers in this study have gained valuable knowledge and wisdom through caring for a child with FASD that can benefit health professionals and the broader community. Whilst the caregivers in this study have overcome challenges through developing and adapting their own strategies, support services providing tailored programs for caregivers when they first start caring for a child with FASD would be beneficial. Furthermore, formal respite was not utilised by the caregivers in this study due to safety issues, inconsistent parenting and interrupted routines, therefore investigation into training respite caregivers in the area of FASD would be beneficial. Furthermore, respite services should consider provisions to include extended families and kinship relationships in a formal context to enable ongoing cultural and family connection, consistent parenting strategies and routines.

Respite needs of families receiving palliative care.

The care of a child with a life-limiting condition proves an emotional, physical and financial strain on the family that provides care for their child. Respite care is one way which allows carers to receive some relief and support in the context of this burden of care. The provision of and the requirements for respite in this context is poorly understood. This survey aims to describe the types of respite care families receive, the respite that they would ideally receive and the barriers that prevent this. A cohort of 34 families cared for by the Paediatric Palliative Care Service in Queensland were approached to participate in a 20-question survey about their current respite preferences for future respite, with 20 surveys returned. Three of the families (15%) reported receiving no respite in the previous 12 months. Families who received respite received a combination of formal respite (a structured care provider) and informal respite (family or friends). Ten families (50%) reported that they would want the time of respite changed. Barriers to receiving adequate respite included complexity of care of the child, financial barriers and lack of a respite provider. There is disparate provision of respite care with the main perceived barrier to attaining 'ideal respite' being the lack of a provider able to meet the complex care needs of their child. The provision of respite across diversity in geography; medical condition; social and cultural needs remains a challenge.

The Impact of Formal and Informal Respite Care on Foster, Adoptive, and Kinship Parents Caring for Children Involved in the Child Welfare System

This paper reports the results of a quantitative 42-item survey that explored foster, adoptive, and kinship parents’ (N = 160) utilization of different types of respite services (formal, informal, and a mixture of formal and informal), as well as their impressions of the impact of respite care on aspects of their lives related to family cohesion and stability, caring for their children, and their personal wellbeing. An exploratory cross-sectional, survey design was used to assess both the formal and informal respite care experiences of the foster, adoptive, and kinship caregivers. Two-tailed Fisher’s exact tests were used to examine the relationship between the type of respite received and caregivers’ respite experiences. Findings indicated that parent experiences differed depending on the type of respite services they received. Specifically, parents who used a mixture of formal and informal respite reported positive experiences related to respite more frequently than the other two types of respite groups, while those who received only informal respite reported less benefit than others. Parents who used formal respite (either alone or mixed with informal respite) reported greater stress reduction. The greatest increase in family stability was reported by parents who received a mix of informal and formal respite. While this study revealed clear benefits for families to using both informal and formal respite services, the findings suggest that formal respite care was helpful to parents regardless of whether used alone or in combination with informal care.

Service use and family-centred care in young people with severe cerebral palsy: a population-based, cross-sectional clinical survey

Purpose: To assess healthcare use and family perception of family-centred care in children and young adults with severe cerebral palsy (CP) within a geographical region of the UK. Method: Young people (4–27years) with severe forms of CP; Gross Motor Function Classification System levels IV and V, were recruited via an established case register. Data were collected in the participant’s home using a standardised background proforma and validated questionnaires. The Measure of Processes of Care was used to assess the family’s perception of family-centred care. Results: One-hundred and twenty-three children, young people and their families/guardians participated. Results showed high accessing of specialist services in childhood with a considerable decrease in young adults. Use of generalist services remained relatively constant. The reported use of formal respite services and support groups/youth clubs was relatively poor. Family-centred care was poor in the area of “providing general information” (2.8 ± 1.73) but more moderate in the areas of “providing specific information about the young person” (4.2 ± 1.94), “enabling and partnership” (4.2 ± 1.9), “co-ordinated and comprehensive care” (4.3 ± 1.95) and “respectful and supportive care” (4.7 ± 1.75). Conclusions: The accessing of specialist services and respite care notably decreases amongst adolescents with severe forms of CP and the perception of family-centred care amongst families was fair at best. In particular, the results highlight the need for families to be provided with more general information and advice.Implications for RehabilitationIn a quest to enhance the rehabilitation process in young people with severe forms of cerebral palsy:Commissioners and service providers need to a adopt a more rationalised, needs led approach to service provision across the lifespan of people with severe forms of cerebral palsy, to include an effective and efficient transitional period.Habilitation specialists working with young adults need to continue to recognise the importance of family-centred care in managing this complex and chronic condition.Professionals working within the healthcare system must provide better communication and improve their dissemination of information to the families of children and young people with complex needs.

Assessing the Need for a Medical Respite: Perceptions of Service Providers and Homeless Persons

For homeless persons, posthospitalization care is increasingly provided in formal medical respite programs, and their success is now reported in the literature. However, there is a dearth of literature on posthospitalization transitional care for homeless persons in the absence of a respite program. Through this formative study, we sought to understand the process of securing posthospitalization care in the absence of a formal homeless medical respite. Results demonstrated a de facto patchwork respite process that has emerged. We describe both human and monetary costs associated with patchwork respite and demonstrate opportunities for improvement in homeless health care transitions.

Development of a Respite Care Program for Caregivers of Pediatric Oncology Patients and Their Siblings

Children with chronic health care needs, including those with cancer, require complex care under direct caregiver supervision. This intensive care management may result in increased stress and psychological distress for the caregiver and family. Respite care services are needed in providing alleviation of caregiver stress among families of children with complex health care needs. This report describes the feasibility of a pilot hospital-based respite care program for caregivers of pediatric oncology patients and their siblings and development of a permanent, expanded service to include both inpatient and outpatient units under the supervision of hospital volunteer services. During the feasibility pilot, 39 respite care requests were made by caregivers for care of patients, with 67% of these requests for care of infants and toddlers. The respite care providers were hospital volunteers. Reasons for the caregiver respite care request included a need to leave the hospital for running an errand, eating a meal, taking a mental break, or talking with the medical team. At the completion of the pilot, caregivers and staff were surveyed and expressed a strong desire for continuation of the service. The success of the pilot led to the implementation of a formal respite care program, Helping Hands, which provides services 7 days a week for inpatients, outpatients, and their siblings. Although this respite care service is specific to children with cancer, the program model is feasible within most pediatric care facilities.

“We Don't Have a Back-Up Plan”: An Exploration of Family Contingency Planning for Emergencies Following Stroke

Little research has explored emergency preparedness among families coping with stroke. In this longitudinal qualitative study, we explored contingency caregiving planning by interviewing (N = 18) family caregivers providing care for a stroke survivor at home during the first 6 months post-discharge from the hospital. Emergent themes showed most families did not have a concrete “back-up plan” for a crisis or disaster situation involving the primary caregiver being unable to provide care. Furthermore, they assumed formal respite services or long-term care would be available should the need arise. Despite increased awareness over time, most caregivers had not devised contingency plans at 6 months.

Support for families coping with stroke or dementia: special considerations for emergency management

Public resilience, an important determinant of effective disaster management, is dynamic, and families coping with debilitating illnesses, such as stroke or dementia, experience unique vulnerabilities as a result of their caregiving responsibilities. When social networks cannot sustain care, family caregivers turn to formal respite programmes for support. This has tremendous implications on demands for respite services in any disaster response. With an ageing population, the demands for family caregiving are increasing, and more people face the challenges of balancing work and family responsibilities. This includes members of the response community who have family members who need assistance with daily living. Without support, many responders may struggle to fulfil their professional roles, creating a threat to response capacity. Preparedness interventions should focus on building resilience and encourage families to explore possibilities for respite care as well as other standard strategies to ensure self-sufficiency in the early phases of a disaster.

Achieving a restorative mental break for family caregivers of persons with Alzheimer's disease

Background/Aim: This phenomenological exploration of how caregivers of persons with Alzheimer's disease achieve a mental break defined them as distinct periods of freedom from caregiving concerns and conceptualised them as the essence of respite and as a restorative occupation. Methods: Four in‐depth interviews each with 15 family caregivers revealed two categories. Results: Factors associated with achieving a mental break included: social support, traditional respite, relief‐enhancing conditions, techniques for momentary stress reduction, and respite impediments. Achieving a mental break included mental break techniques and experiencing a mental break. Conclusions: Restorative mental breaks are often within caregiver control, are achievable independent of formal respite services, and involve both rest and engagement in absorbing activities. Restorative breaks are often pleasurable, support productivity, may be entwined with caregiving activities, and importantly, do not compromise care recipient well‐being.

Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario.

To describe the use of formal respite services among caregivers of children with cerebral palsy in Ontario and discuss the factors that may contribute to respite use and non-use. A total of 468 caregivers were interviewed about their experience with formal respite services. Interviews were part of a larger cross-sectional study on caregiver health. Caregivers were asked about their knowledge of formal respite services; their use of formal respite services in the past year; financial implications relating to formal respite use; perceived barriers to formal respite service use; and reasons for not using formal respite services (if applicable). Nearly half (46%) of caregivers in the sample reported using respite services in the past year. Most of the caregivers who used respite services used more than one source of respite, had services provided in their home, often for less than 1 day, and reported using them more than six times. The most commonly cited reason for using formal respite services was for a planned break. Many factors influenced caregivers' use of formal respite services. Caregivers who had a child with a lower level of function, with multiple additional conditions, or who was male, were more likely to use formal respite services. Although over 90% of caregivers indicated that respite use is beneficial for both their family and child, over 60% reported facing many barriers while attempting to access respite services. Results from this cross-sectional study indicate that caregivers who used respite services used them frequently for breaks from caregiving. Caregivers described facing many barriers while attempting to access respite services therefore to improve caregiver's experience with respite services, strategies are suggested.

Community-Based Services for the Taking but Few Takers: Reasons for Nonuse

This study examined reasons for not using nine community-based services and characteristics associated with these reasons among a sample of 293 older person–caregiver dyads in a Canadian province. The most frequent reasons were that the older person's health did not necessitate use, family/friends provided assistance, and the caregiver was unaware of the service. Cognitive impairment was associated with not using homemaker and/or cleaning services, in-home nursing services, and home-delivered meals as family/friends provided assistance; higher caregiver burden also emerged as significant for these services and personal care services. Male caregivers and caregivers with less education were more likely to be unaware of the availability of day centers, day hospitals, and formal respite services. Implications for future research and practice are highlighted.

Effects of respite care on patients with dementia and their caregivers.

The purpose of the literature review discussed in this article was to determine the effect of formal respite care on patients with dementia and their caregivers. Three computerized databases were searched for relevant English language articles published from 1975 to 1994, and the bibliographies of retrieved articles were systematically reviewed for additional references. Five studies met the following inclusion criteria: original research; controlled trial of a defined respite intervention; sample including a dementia population; and at least one outcome measure relating to at least one of eight specified caregiver and patient variables. Four studies met validity criteria and were included for the review. There was little evidence that formal respite care has a significant effect on caregivers' burden, psychiatric status, or physical health; or on patients' cognition, function, physical health, or rate of institutionalization. However, given the small number of controlled studies found and their methodological and conceptual limitations, these data should be interpreted with caution.

Determinants of the Need for Respite Among Carers of People with Dementia

Respite is effective in alleviating the stress caused by caring for a person with dementia. A questionnaire survey examined the factors associated with the use of, and unmet need for, respite. In the past year, one third of carers had used respite monthly or more; 20% indicated an unmet need for respite at least monthly. Frequent users were likely to be female, providing care for a more elderly person, and obtaining respite from family and friends rather than from formal sources, Unmet need was associated with depression, restricted social activities, family illness, and negative perceptions of formal respite services. Flexibility may be the key element in enabling formal respite services to reduce unmet need.

Respite care for Alzheimer's families: Research findings and their relevance to providers

A research project to evaluate a respite care program for caregivers of patients with Alzheimer's disease and related conditions provided information relevant to service providers of respite care. Providers must under-stand the psychological needs of caregivers that enter into their willingness to use respite care. Caregiving equity, caregiving modeling, the moral imperative of caregiving, caregiving as a challenge, caregiving as role continuity, and resignation to caregiving are themes that may be accountedfor in designing and marketing respite care. People use formal respite as a supplement to the caregiving relief provided byfamily members. Although respite care was highly valued by most who used it, persistent problems involve the cost of care as well as the reluctance of many to entrust their impaired relative and their home to a relative stranger. Training and selectivity in recruitment of respite workers are essentialfor consumer acceptance.