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

OBJECTIVE: 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. METHODS: 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). RESULTS: 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. CONCLUSION: 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.     

Respite care:outcomes for kinship and non-kinship caregivers

This study reports the outcomes associated with the use of formal respite care services among a sample of kinship, foster and adoptive caregivers of special needs children involved in the child welfare system. It uses pre-post survey research data collection methods to evaluate changes in caregivers' ratings of their quality of life, health, stress, support, objective and subjective burden, stress, and family relations. Caregivers reported reduced stress, improved quality of life, and significantly decreased feelings of objective burden as a result of respite. Suggestions for improving and evaluating respite care outcomes are provided. doi:10.1300/J045v22n03_06.     

Respite care--an explorative study of demand and use in Dutch informal caregivers

Recently, there has been increasing concern for the well-being of informal caregivers. Attention is directed at the development of respite care programs that provide support and relief by (temporarily) easing the burden for the caregiver. Yet, little is known about caregivers' needs, desires and use of respite care facilities. A survey was conducted among a population of informal caregivers, to investigate demand for and use of the four most common types of respite care, namely in-home respite care, day-care, short-stay and special holiday arrangements. The 273 caregivers that participated in this study were reasonably well informed about existing services, especially out-of-home services; least informed was a subgroup that needs but currently does not make use of respite. About one-third of caregivers made use of respite care. These caregivers experienced substantial burden and expected burden (60.7 on a 0-100 scale) to increase substantially in case respite care would no longer be available (+31 on a 0-100 scale). Caregivers and care recipients were generally satisfied with the respite care they receive. About half of the non-users indicated to need or desire respite care, in general those non-users experiencing a relatively high burden. The main impeding factor for use of respite care was care recipient resistance against respite (38%). A majority of carers (62%) anticipated that respite care could substantially decrease their subjective burden (-29 on a 0-100 scale). Mostly respite care facilities reach the caregivers most in need of support, but not all caregivers in need make use of respite. Improvements are possible in terms of information provision and focus on combined caregiver-care recipient needs and desires. More research is needed into the (cost-)effectiveness of respite care.     

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.     

An investigation of factors related to the use of respite care services for children with severe motor and intellectual disabilities (SMID) living at home in Japan

Limited time away from the child is cited as the main factor that increases the burden for the primary caregiver of severely disabled children. The aim of this study was to quantitatively elucidate the factors related to the desire to use social services and the actual use of respite care services by the primary caregivers of severely disabled children in Japan. In this study, we investigated the use of respite care services in accordance with the primary caregivers’ wishes by examining inhibiting or promoting factors associated with respite care service use only among those who wished to use social services. A total of 169 Japanese mothers participated and answered the questionnaires. We conducted a logistic regression analysis and a multiple regression analysis to investigate the factors related to respite care service use. The most important factors affecting a primary caregiver's desire to use social services were the belief that the child would enjoy using social services and the family's approval of the social service use. The most important factors affecting respite care service use were the family's approval of the use and a large care burden on the primary caregiver. Respite care services should be sought out before the care burden becomes too great to enable the primary caregiver to more easily contribute to the continuation of home care. A background of mother–child separation anxiety disrupted the use of respite care. However, believing that the child enjoys using social services may reduce primary caregivers’ psychological resistance to being separated from their child, which is supported by tradition. Thus, it is also important for respite care service providers to provide information about the children to their primary caregivers and families while they are using respite care services.     

Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome

Background   International research in recent years has begun to focus on the medical problems of individuals with intellectual disabilities and on family stress in accessing health services for persons with developmental disabilities. Less is known about the needs of individuals in different diagnostic groups, or about their experiences of systems of care. Therefore, we report the results of focus groups with parents of children or adults with fragile X syndrome, autism or Down syndrome.
Methods   Semi-structured group interviews with parents of children, youth or adults from each of three diagnostic groups probed perceptions of challenges and successes in obtaining and negotiating healthcare services in Ontario, Canada.
Results   Parents described diverse barriers to care, the need for advocacy in securing services, perceptions of service delivery and the role of healthcare professionals in regulating access to a wide range of services. Diagnostic services represented one area of central concern to parents from all three groups.
Discussion   Focus group data yielded a wide range of concerns. Suggestions for enhancing the system included expanding syndrome-specific education for medical students and health professionals and creating a centre that could offer service-related information for parents.     

Quality of life, health satisfaction and family impact on caregivers of children with developmental delays

Objective   To study the quality of life, health satisfaction and family impact on caregivers of children with developmental delays in Taiwan.
Design   Cross-sectional study.
Subjects   The caregivers of children with diagnoses of developmental delays recruited from a teaching hospital in northern Taiwan.
Methods   The main caregivers of 48 male and 22 female children with developmental delays were recruited. WHOQOL-BREF for health-related quality of life (HRQOL), PedsQL-Health Satisfaction for health satisfaction, PedsQL-Family Impact Module and Impact on Family Scale for family impact were evaluated. The correlation of caregivers' HRQOL, health satisfaction and family impact were also studied.
Results   Caregivers in nuclear families had higher health satisfaction scores (78.2 for nuclear families vs. 66.9 for extended families, P  < 0.05) when assessed by the PedQL-Health Satisfaction questionnaire. Children's age was negatively correlated with family impact, including parent (−0.272, P  = 0.023), family (−0.262, P  = 0.029) and total scores (−0.281, P  = 0.018) as assessed using the PedsQL-Family Impact Module.
Conclusion   A negative relation between impact of burden and child's age suggests that family members gradually adapt to the delayed developmental status in their children as they grow. Caregivers in nuclear families having higher health satisfaction than those in extended families may be due to Chinese cultural effects.     

Barriers and Facilitators to Caring for a Child with Cerebral Palsy in Rural Communities of the Western Cape,South Africa

Family members of children with disabilities have become more involved in their children’s care and have adopted the role of primary caregiver. Due to the varying degrees of the condition, children with cerebral palsy (CP) often require greater involvement from their caregivers. Fifteen caregivers for children with CP residing in rural communities of the Western Cape, South Africa, were interviewed to explore the barriers and facilitators that they encountered. Thematic analysis revealed that some progress has been made in terms of service provision to caregivers from previously disadvantaged communities. However, a lot more needs to be done to help caregivers with children with CP. Social support, increased public awareness of the causes of disability, financial support by the government and access to disability friendly services, such as respite care, special education and transport-related services, have been identified as essential. It is important to take this into consideration when designing future interventions in order to provide caregivers with support and services necessary to make an impact.     

Care for a break? An investigation of informal caregivers' attitudes toward respite care using Q-methodology

OBJECTIVE: To investigate informal caregivers' attitudes toward respite care. METHOD: Interviews with informal caregivers during open-house support groups (three) for informal caregivers, conducted late 2004 at Informal Care Support Centres in the city of Rotterdam, The Netherlands. A Q-methodological study was conducted. Informal caregivers were asked to rank-order 39 statements regarding motivation for providing informal care; supporting capacity; physical, psychological, practical, financial, relational and social obstacles; subjective burden; need for support; experienced support; and propensity and impediments to make use of respite care. In addition, respondents explained their Q-sort in writing and completed a questionnaire regarding characteristics of the caregiver, the care recipient, and the objective and subjective burden of their care giving situation. Individual Q-sorts were analysed using PQMethod 2.11 (statistical method factor analysis with a varimax rotation). Objective of Q-analysis was to reveal a limited number of corresponding ways the statements were sorted. For the factors identified, composite sorts were determined. Factors were interpreted and described using the composite sorts, differences and similarities in rank value of statements between factors and the explanations by respondents. RESULTS: We found three distinct groups of caregivers: informal caregivers who need and ask for respite care, those who need but won't ask for respite care, and those that do not need respite care. Caregivers in the first two groups experience substantial burden, while those in the third group enjoy sufficient support and appear to manage pretty well. Caregivers in the second and third group derive considerable satisfaction from care giving. On balance, caregivers in the first two groups would sometimes rather have someone else take over their task. The first group feels misunderstood and undervalued by health and welfare organisations and has problems obtaining respite. The desire for respite of caregivers in the second group is not unambiguous, affected by care recipient resistance against respite. CONCLUSIONS: Respite care programmes should target caregivers in the first two groups. Regarding the second group, effort should be directed to both caregiver and care recipient. They need to be convinced that it is in their mutual interest to make the care giving task manageable in the long run, because they report serious burden from care giving coupled with a resistance to respite care.     

Psychiatric home care of elderly persons with depression: unmet caregiver needs

The purpose of this study was to explore what nursing interventions are currently being provided to family caregivers of elderly persons with depression as a part of standard home health care; and identify unmet needs of these family caregivers. Unmet caregiver needs were examined from both the family caregiver and staff nurse perspective, using caregiver structured interviews and staff focus groups. Ten caregivers participated in structured interviews and nine staff nurses participated in three focus groups. Caregivers reported unmet needs concerning support and respite, dealing with their own feelings, learning more about care-related tasks and role changes, and stress management. Similarly, nurses speculated that nursing interventions should focus on increased counseling, family and community support, assisting caregivers with their learning needs and care-related responsibilities. These findings contribute toward a better understanding of interventions currently provided to caregivers of depressed elderly persons, as a part of standard psychiatric home care; identify unmet caregiver needs; and suggest areas for future psychiatric research in home care settings.     

"Between the devil and the deep blue sea": the beliefs of caregivers of people with dementia regarding the use of in-home respite services

This article details results from qualitative research with caregivers in regard to the beliefs they associate with the use of in-home respite services. Outcomes are perceived by caregivers in relation to care recipient personal safety and the avoidance of negative consequences through the provision of supervision in the caregiver's absence. Use of in-home services challenges normative beliefs for some caregivers, particularly for spousal caregivers who feel it is their role to provide assistance that is needed in the home. Likewise, perceived inflexibility and the inability of in-home services to provide responsive and personalized care make the use of in-home services difficult and may inform control beliefs. Implications are discussed in relation to community care pathways and the promotion and development of in-home respite services to better target caregiver beliefs and respond to caregiver perceived needs.     

Problems With Access to Dental Care for Medicaid-Insured Children: What Caregivers Think

OBJECTIVES: This study aimed to gain insight into the experiences, attitudes, and perceptions of a racially and ethnically diverse group of caregivers regarding barriers to dental care for their Medicaid-insured children. METHODS: Criterion-purposive sampling was used to select participants for 11 focus groups, which were conducted in North Carolina. Seventy-seven caregivers of diverse ethnic and racial backgrounds participated. Full recordings of sessions were obtained and transcribed. A comprehensive content review of all data, including line-by-line analysis, was conducted. RESULTS: Negative experiences with the dental care system discouraged many caregivers in the focus groups from obtaining dental services for their Medicaid-insured children. Searching for providers, arranging an appointment where choices were severely limited, and finding transportation left caregivers describing themselves as discouraged and exhausted. Caregivers who successfully negotiated these barriers felt that they encountered additional barriers in the dental care setting, including long waiting times and judgmental, disrespectful, and discriminatory behavior from staff and providers because of their race and public assistance status. CONCLUSIONS: Current proposals to solve the dental access problem probably will be insufficient until barriers identified by caregivers are addressed.     

“Between the Devil and the Deep Blue Sea”: The Beliefs of Caregivers of People With Dementia Regarding the Use of In-Home Respite Services

This article details results from qualitative research with caregivers in regard to the beliefs they associate with the use of in-home respite services. Outcomes are perceived by caregivers in relation to care recipient personal safety and the avoidance of negative consequences through the provision of supervision in the caregiver's absence. Use of in-home services challenges normative beliefs for some caregivers, particularly for spousal caregivers who feel it is their role to provide assistance that is needed in the home. Likewise, perceived inflexibility and the inability of in-home services to provide responsive and personalized care make the use of in-home services difficult and may inform control beliefs. Implications are discussed in relation to community care pathways and the promotion and development of in-home respite services to better target caregiver beliefs and respond to caregiver perceived needs.     

Meeting Children's Mental and Physical Health Needs in Child Welfare: The Importance of Caregivers

Caregivers in the child welfare system are an important element in ensuring that mental and pediatric health services for their children are utilized appropriately. The high prevalence of mental and physical health problems of children in the child welfare system along with the inadequate utilization of health services make the role of caregivers essential for improving health outcomes. This article explores the barriers to meeting the health needs of this vulnerable population of children and how different types of caregivers (unrelated foster, kinship foster, and birth parents) utilize mental and pediatric health services. Child welfare caseworkers need to increase their communication with caregivers, assess adherence to health care recommendations, and help alleviate barriers to care.     

Engaging Caregivers in the Treatment of Youth with Complex Developmental and Mental Health Needs

Caregivers of youth with coexisting cognitive and mental health problems face difficult treatment decisions for their child and have unique challenges engaging in shared decision-making. Many stakeholders can influence care management decisions, and the child’s cognitive impairment often prohibits their inclusion in the shared decision-making process. In-depth interviews and focus groups with 37 caregivers elicited their experiences with care management related to their child’s educational, mental health, and other care needs. Four themes that describe the process of engagement were awareness, activation, formulating a strategy, and action. Findings show psychoeducation, and peer-to-peer support could enhance caregivers’ awareness of the condition and encourage activation, which would help in navigating complex service sectors. Coordinated services could enhance capabilities for formulating a strategy jointly with multiple providers and stakeholders. Ultimately, this would contribute to shared decision-making around a common treatment goal that hopefully leads to better quality of care in the least restrictive setting.     

Family-centred care and health-related quality of life of patients in paediatric neurosciences

Background   Little is known about the influence of contextual factors such as health services characteristics on health-related quality of life (HRQL) for children with a neurological condition. To address this gap, we conducted an exploratory study of the relationship between family-centred care (FCC) and HRQL outcomes in children from neurosciences clinics in a large acute care hospital.
Methods   A total of 187 family caregivers completed questionnaires regarding their socio-demographic status, the severity of their children's condition (FIM™), perceptions of their children's HRQL (PedsQL 4.0) and their experiences of FCC (MPOC-20). Hierarchical regression analyses explored the hypothesis that FCC is a significant predictor of children's HRQL, independent of illness severity.
Results   Illness severity and FCC jointly explained one-third of the variance in children's total HRQL. When FCC was controlled for illness severity, it remained a significant predictor of physical, psychosocial and total HRQL scores.
Conclusions   This study provides evidence that the level of FCC is positively related to paediatric HRQL independent of neurological illness severity. The implication is that the uptake of FCC practices by service providers can positively impact the quality of life of children with neurological disorders.     

How is Taking Care of Caregivers of Children with Disabilities Related to Academic Achievement?

Respite care services have been linked to variety of positive outcomes for caregivers and families alike. The purpose of the current study was to examine the association of receiving respite care with academic achievement for children with disabilities across time. The study employed a nationally representative sample of children to examine this relationship using structural models. Results indicate a positive association between receiving respite care services and academic achievement across time for children with disabilities. In an era of high-stakes achievement testing, these results link respite care services to those academic achievement outcomes while complementing previous research.     

Integrating community health workers into a community hearing health collaborative to understand the social determinants of health in children with hearing loss

BackgroundChildren with hearing loss (HL) require coordination of care to navigate medical and social services. Strong evidence supports the role of community health workers (CHWs) to identify and address social barriers.ObjectiveThe goal of this study was to evaluate the impact of integrating CHWs into the medical teams of children with HL and identify the social needs associated with their caregivers at a large urban hospital center.MethodsA retrospective chart review was conducted for 30 children with HL whose caregivers enrolled in a CHW program between August 1, 2017 and December 31, 2019. Baseline demographic data were collected, including social circumstances such as food and housing insecurity, status of social security supplemental income (SSI), and need for referral to early intervention (EI) or preschool/school services. Caregivers were assessed for confidence in self-management; baseline distress level was measured via a distress thermometer.ResultsOf the 30 charts reviewed, 93% demonstrated social needs including food insecurity (24%) and educational service needs (45%). Eighty-seven percent of caregivers reported a sense of control over the child's condition, yet 73% reported a stress level of four or greater on the distress thermometer scale. At 3 months follow-up, 70% of patients completed referrals; a significant number of patients had obtained hearing aids and cochlear implants compared to baseline (p = 0.017).ConclusionsCaregivers of children with HL face multiple social obstacles, including difficulties connecting to educational and financial resources. CHWs are instrumental in identifying social needs and connecting caregivers to services.     

Caregivers' unmet needs for support in caring for functionally impaired elderly persons: a community sample

Few estimates have been made of the extent to which the needs of caregivers are met. In addition to the inadequate capacity of services, many caregivers lack adequate financial resources, social resources, or other means to access them. Caregivers who provide services to minority or poor elderly may be particularly needy since their care receivers tend to be less healthy and are less likely to use institutional facilities. To address this issue, the authors studied a community sample of 124 caregivers who identified correlates of their perceived unmet caregiver needs and their use of supportive services available for their caregiving. Results indicated that 51.8 percent of women and 67.4 percent of men reported needs for one or more community services that were not met. It was concluded that caregivers who are poor or who required financial assistance are at the highest risk for needing assistance while providing caregiving services. Community services may more effectively target potential needs of caregivers through routine screenings.     

Parenting children requiring complex care: a journey through time

Background Parents of children requiring complex care provide intense and demanding care in their homes. Unlike professionals who provide similar care in institutions, parents may not receive regular breaks from care giving. As a result, parents, over time, experience health and social consequences related to care giving. Respite care, one form of a break from care giving, is frequently cited as an unmet need by such parents. Method Given the paucity of literature on the impact of care giving over time, an ethnographic approach that involved in‐depth interviews, participant observation, eco‐maps, and document review was used. Parents of children requiring complex care, nurses and social workers participated in the study. Results A developmental map of care giving over time was constructed from the parents' retrospective accounts of parenting a child requiring complex care. The developmental map describes the trajectory of care for the children from infancy through young adulthood and the parents' evolving needs for respite care. Conclusion Existing literature focuses on the day‐to‐day experiences of parents, who are carers, rather than their experiences over time. As parents of children requiring complex care are providing care from infancy through the death of either child or parent, respite needs will change. This developmental map identifies how a group of parents reported these changes in care giving and their perceived needs for respite care.