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

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Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario
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  Original Article © 2004 Blackwell Publishing Ltd 77 Blackwell Science, LtdOxford, UKCCHDChild: Care, Health and Development1365-2214Blackwell Publishing Ltd, 2004 2004 30 17786 Original Article Formal respite service use in OntarioG.Damiani et al. Correspondence:Peter Rosenbaum, CanChild   Centre for Childhood Disability Research, Institute of Applied Health Sciences, McMaster University, 1400 Main Street West, Rm. 408, Hamilton, Ontario L8S 1C7, CanadaE-mail: rosenbau@mcmaster.ca Original Article Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario G. Damiani, P. Rosenbaum, M. Swinton and D. Russell CanChild   Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, CanadaAccepted for publication 30 September 2003 Abstract 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. Keywords formal respite services, cerebral palsy, services in Ontario, caregivers Introduction Providing care for a child with a disability can takeconsiderably more commitment and resourcesthan caring for a child without a developmental orphysical delay (Smyth-Staruch et al  . 1984; Neufeld et al  . 2001). As a result of the extra demands,parents of children with disabilities must rely onhealth care and social services, such as home-careand respite, to assist them with their caregivingroles.Formal respite services, provided by for-profitand non-profit organizations, are defined as:‘services which provide alternative care arrange-ments for persons with disabilities to allow theircarers a short-term break from care commitments.’  78 G. Damiani et al  . © 2004 Blackwell Publishing Ltd, Child: Care, Health & Development  , 30 , 77–86 (Australian Bureau of Statistics 1999). Formalrespite services must be differentiated from infor-mal respite, which is provided to caregivers by rel-atives, friends and others who are not   affiliatedwith any particular organization and are often notpaid for services.The length of time formal respite services areprovided varies; it may be offered on an hourly basis or for several weeks. Services can be providedin or out of the home, by either a trained worker(e.g. a nurse or occupational therapist) or by acommunity person (e.g. a paid babysitter). Unlikehome-care services, which focus solely on aidingcaregivers with activities of daily living for thechild, the focus of respite services is to providecaregivers with a temporary break from their daily caregiving duties and enable them to participate insocial activities. However, because most respite ser-vices are provided along with home-care services,caregivers often use respite services to aid withactivities of daily living.A review of findings from international studieshas shown that formal respite use may decreaseboth caregiver burden and stress (Rimmerman et al  . 1989; Chan & Sigafoos 2001). It may alsoprovide support, enhance coping resources andself-esteem in caregivers and increase family cohesion and adaptation (Rimmerman et al  .1989).Few studies have been conducted in Canada onthe characteristics of respite users. Only two cross-sectional studies were carried out in the last13 years and they focused solely on Western Can-ada. One of these studies (Neufeld et al  . 2001) hada very low response rate (21%) and the other (Marc& MacDonald 1988) was an evaluation study of aspecific respite provider. Thus, a study was neededto assess formal respite use in Ontario and examinethe characteristics of users and non-users of theseservices. As stated in the Canadian Institute of Child Health document The Health of Canada’sChildren  (Kidder et al  . 2000), ‘. . . a comprehensivestudy is urgently needed [in Canada]which . . . identifies what services . . . are required[by children with disabilities and theircaregivers] . . . there is urgent need for more dataon the need and availability of supports for familiesincluding enhanced respite . . .’ (pp. 229–230).We aimed to fill this research gap by providinginformation from our cross-sectional study on theutilization of formal respite services by caregivers(individual(s) self-selected as the most responsiblefor the day-to-day decision-making and provisionof care for the child) of children with cerebral palsy from across Ontario. This paper includes informa-tion on: (i) rates of respite use; (ii) reasons forrespite use and non-use; and (iii) relationshipsbetween respite use and demographic characteris-tics of families using respite services. Methods This study was carried out as part of a larger study of caregiver well-being, which is described briefly here. In April 2000, the CanChild   Centre for Child-hood Disability Research at McMaster University undertook a study entitled ‘Caring about Caregiv-ers: Health and Well-Being of Caregivers of Chil-dren with Cerebral Palsy’. The sample of caregiversin the ‘Caring about Caregivers’ study wasrecruited from a cohort of 632 families who hadparticipated in a previous CanChild   study assess-ing the motor development in children with cere-bral palsy (the Ontario Motor Growth or OMGstudy). To ensure a representative sample of chil-dren with cerebral palsy, the OMG study samplewas obtained using stratified random sampling of children of various ages and disability levels, from18 of 19 children’s rehabilitation centres through-out Ontario. (For further details on the OMGstudy sampling strategy, please refer to Rosenbaum et al  . 2002.) Data collection for the Caregiver Study occurred between March 2001 and May 2002.The initial recruitment strategy involved mailingfamilies a recruitment letter, a consent form, and abrochure describing the study. Caregivers werethen telephoned by a member of the research teamto ascertain participation. Consenting caregiverswere interviewed in their homes and provided witha self-administered questionnaire to complete.Of the 632 families approached to participate inthe Caregiver Study, 42 families were lost to follow up and unable to be contacted. Of the 590 familiesthat were contacted, 20 families were ineligible and67 refused. In the end, 503 (88.2%) agreed to par-ticipate in the study. Of the 503 caregivers who  Formal respite service use in Ontario 79 © 2004 Blackwell Publishing Ltd, Child: Care, Health & Development  , 30 , 77–86 agreed to participate, 35 (6.9%) were unable to beinterviewed or were lost. The final sample con-sisted of 468 caregivers. Questionnaire and structured interview  The child’s level of function was obtained usingtheir most recent GMFCS classification from theOMG study, the Gross Motor Function Classifica-tion System for Cerebral Palsy (GMFCS) (Palisano et al  . 1997; Wood & Rosenbaum 2000). Informa-tion on the caregiver’s knowledge and use of respiteservices was collected in a face-to-face interview using a series of structured questions based on therespite literature. These questions were developedby the investigators because of the absence of avalid and reliable respite needs assessment tool.The questionnaire and structured interview included additional questions on sociodemo-graphic information and the caregiver’s level of support. Statistical analysis Statistical analyses were conducted to examine thecorrelates of respite use among child, family, andsupport variables. Chi-square tests were used fornominal and ordinal variables, and independent t  -tests were used for continuous data. Univariateanalyses were performed to enable the selection of independent variables to include in a multivariatelogistic regression model of respite use. Results Caregiver sociodemographic information Four hundred and sixty-eight caregivers of chil-dren with cerebral palsy completed both the inter-view and the questionnaire. The majority of caregivers in the sample were female (94%), spokeEnglish (98%), were married or living with a part-ner (81%), had completed some vocational orpost-secondary schooling (61%), and were thechild’s biological mother (89%). The average age of the caregivers was 40 years. Almost half (49.6%) of the caregivers in the study reported that their childwith a disability was their first parenting experi-ence (for more details about this population, seeTable 1). Child sociodemographic information The average age of the children was 10 years. Morethan half (56%) were male, and had at least onecondition or diagnosis in addition to their cerebralpalsy.The children had a wide range of functional abil-ities. Of the 468 children, 28.1% were classified inLevel I in the GMFCS Classification System (themost functional level of cerebral palsy in this clas-sification system); 11% in Level II; 19% in Level III;21% in Level IV; and 20.6% in Level V (the leastfunctional level). Formal respite services Respite service use in the past year  Of the 468 caregivers interviewed, 46% reporteduse of formal respite services. In the past year, car-egivers reported a total of 389 episodes of respiteuse. Among those who reported using respite ser-vices, 40.7% had to pay out of pocket. For morethan one-third (39%) of these caregivers, theamount they had to pay limited the amount of respite they used.Just over half (51%) of the caregivers who usedrespite services accessed more than one source of respite service. Fifty-two per cent of all the episodesof respite use were provided in the caregiver’shome, 25% in a place outside the home, 11% in thehome of a non-relative, 6% in a relative’s home,and 6% in various places.Of the respite episodes reported, over half (52%)were provided by a professionally trained worker,44% by another person (such as a paid babysitter,friend or student), and 4% by another family through Extend-a-Family. Nearly three quarters(73%) of the caregivers who used a respite servicereported using it more than six different times,20% reported using it from two to six times, and7% reported using it only once.Over half (57%) of the caregivers reported thattheir child was in respite care for less than 1 day (for more information, see Fig. 1).  80 G. Damiani et al  . © 2004 Blackwell Publishing Ltd, Child: Care, Health & Development  , 30 , 77–86 Caregivers reported a number of reasons foraccessing respite services, the most commonbeing for: (i) a planned vacation or break (40%); and (ii) assistance with daily living(19%). Other reasons included socializing forthe child (10%), coping with a crisis (5%), abreak for the siblings (5%), and for combinedreasons (21%). Table 1. Demographic characteristics of the caregivers ( n  = 468) and their children with cerebral palsy (%) Caregivers GenderAge of caregivers Female94.420–29 years6.4Male5.630–39 years41.040–49 years43.6 ≥ 50 years8.8Missing0.2 Marital statusEducation level of caregivers Never married5.3Elementary2.1Married/with partner81.0High School30.9Separated7.3Some college/technical training43.6Divorced4.1Some/completed university (undergraduate)19.5Widowed2.4Some/completed university (graduate)3.9 Gross household incomeNumber of people in the home No income0.04 £ 2 people8.3 <  $50000.063–4 people54.7$5000–$99993.75–6 people33.1$10 000–$14 0006.47–8 people2.8$15 000–$19 0005.59–14 people1.1$20 000–$29 0008.2$30 000–$39 0009.2$40 000–$49 00012.0$50 000–$59 00012.9$60 000–$79 00017.3 ≥ $80 00023.6Missing1.1 Relationship of caregiver to childCaregiver’s current main activity  Mother89.7Caring for family37.0Father5.3Working for pay1.1Relative0.5Caring for family and working for pay58.1Foster parent3.2Other3.8Other1.3 Caregivers’ children Child’s genderChild’s age Male56.06–9 years41.5Female43.810–13 years40.8Missing0.0214–17 years17.5Missing0.2 Type of cerebral palsyMost current GMFCS level  Spastic74.1Level I (walks without restrictions28.0Dystonic/athetonic5.8Level II (walks without assistive devices)11.1Ataxic3.2Level III (walks with assistive devices)18.8Low tone-hypotonic4.3Level IV (self-mobility with some limitations)21.4Mixed9.2Level V (self-mobility with severe limitations)20.5Not applicable3.0Missing0.2Missing0.4 Children with additional conditionsNumber of additional conditions Additional conditions57.70 conditions42.3No additional conditions42.31–2 conditions45.73–4 conditions10.15–9 conditions1.9GMFCS, Gross Motor Function Classification System for Cerebral Palsy.  Formal respite service use in Ontario 81 © 2004 Blackwell Publishing Ltd, Child: Care, Health & Development  , 30 , 77–86 Parents’ perceptions of respite services Nearly all ( >  90%) of the caregivers who usedrespite services agreed that these services were ben-eficial for their family and their child.Caregivers were evenly split on whether they thought the respite services they were receivingwere adequate for their child and family. Forty-six per cent agreed that they had adequate respite ser-vices for their child and family, while 47% did not.Seven per cent of respondents were uncertain. Barriers encountered by respite users Many of the caregivers (63%) stated that they found respite services difficult to obtain and iden-tified a number of barriers encountered while try-ing to access them.The five most commonly cited barriers to formalrespite service use were: respite resources were lim-ited (for 50% of caregivers); respite services wereoften difficult to arrange (47%); the service theirfamily needed was difficult to find (44%); caregiverswere concerned about the quality of care their childwould be receiving (29%); and information regard-ing respite services was difficult to find (11%). Reasons for not using respite services in the past year  Of the 254 (54%) caregivers who did not use respiteservices, 72% reported that they did not need them.The top five remaining reasons for not using respiteservices were: for 52% of caregivers other relief carewas available; 24% did not have enough informa-tion about respite services and how to get them;21% of caregivers did not know the service existed;16% found services to be limited or were concernedthat their child would not get sufficient care; 11%were either concerned that the worker/caregiverlacks supervision or were not given a choice aboutwhat would suit their family’s needs.At the time of the interview, 9% of the caregiverswho had not used respite services in the past yearhad applied for services but services had not yetbeen arranged. Factors associated with respite use in the past year  Child characteristics Formal respite service usewas significantly associated with the child’s gender,GMFCS level and number of additional medicalconditions.Caregivers of male children were more likely tobe using respite services in the past year than car-egivers of female children ( c 2  = 3.783, P   = 0.052).Furthermore, caregivers of children who had alower level of function (measured by a higherGMFCS classification level) were also more likely to use respite services than caregivers whose chil-dren were higher functioning ( c 2  = 105.504, P   = 0.000) (for all GMFCS levels, see Fig. 2).Caregivers of children with additional healthconditions were also more likely to use respiteservices than those whose child had few, or no,additional conditions ( c 2  = 9.367, P   = 0.001 and c 2  = 15.989, P   = 0.043, respectively). However, theage of the child was not a predictor of respite use( t   = 0.263, P   = 0.793). Caregivers of younger chil-dren were equally as likely to use respite services ascaregivers of older children. Family characteristics Respite use was not statisti-cally associated with any of the following family variables in the study: caregiver age ( t   = 1.550, P   = 0.122), marital status ( c 2  = 7.796, P   = 0.099),education level of the caregiver ( c 2  = 9.694, P   = 0.643), caregiver’s main activity ( c 2  = 9.054, P   = 0.171), caregiver’s relationship to child( c 2  = 6.464, P   = 0.373), household income( c 2  = 14.321, P   = 0.216), the number of children inthe household ( t   = 4.090, P   = 0.129), or the birthorder of the child with cerebral palsy ( c 2  = 1.847, P   = 0.397). Social support  Some studies on respite have sug-gested a possible relationship between respite use Figure 1. Duration of episodes of respite care ( n  = 389). 57%9%20%4%2%8% Less than a day (57%)Overnight (9%)Two to three days (20%)One week (4%)More than one week (2%)Other (8%)
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