________________________________________ The following chart should help you with parenting styles. It was adapted and changed a bit from Parent Child Relations, 2nd ed., by Phyllis Heath (Saddle River, NJ: Pearson, 2009), p. 29. Characteristics of Five Parenting Styles _____________________________________________________________________________________ Parenting Style Emotional tone Parental support Parental Control Common outcomes ________________________________________________________________________________________ Authoritative: warm high Moderate highest levels of academic democratic, family strictness achievement, cooperative with meetings peers and family, psychosocial maturity, less likely to have behavior problems. Authoritarian: cold low Very strict, Dependent, passive and Dictatorship, “my physical conforming, low self esteem, turn way or the punishment to parents for answers. Have never highway” been trusted. Are more likely to turn to crime and delinquency than children of authoritative parents. Permissive or warm high Very little control Low academic achievement, poor Indulgent: and no standards impulse control, immaturity, less “whatever” are set socially responsible, do whatever peers suggest Traditional: warm high Very strict Good racial and cultural identity (like your outcomes, good problem solving grandmother) skills, strong attachment to family, excellent type of parenting when living in a dangerous neighborhood Indifferent: cold Very little or no Very little control Peer rejection, poor academic Neglectful parental support or no control performance, higher rates of (parent never there delinquency, drug, and alcohol and uncaring) problems, earlier sexual involvement. ___________________________________________________________________________________ Original Article doi:10.1111/j.1365-2214.2007.00790.x Parenting children requiring complex care: a journey through time H. MacDonald* and P. Callery† *University of New Brunswick, Fredericton, Canada, and †School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK Accepted for publication 23 April 2007 Abstract Keywords developmental map, parental needs, parenting children requiring complex care, respite Correspondence: Heather MacDonald, RN, MScN, PhD, University of New Brunswick, PO Box 4400, Fredericton, NB, Canada, E3A 5A4 E-mail: heatherm@unb.ca 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. Introduction The transition of children requiring complex care from institution to home started in the 1980s and continues today as a means of closing institutional beds and being more costeffective (Kirk & Glendinning 1998; McNally et al. 1999). Such a move is also believed to be more developmentally normal for the children and their families. There are health and social consequences for parents giving long-term, intensive care in the home; care that would previously have been provided in institutions by professionals (Baldwin & Glendinning 1983; Leonard © 2007 The Authors Journal compilation © 2007 Blackwell Publishing Ltd et al. 1993; Dowdell 2004; Emond & Eaton 2004; Abbott et al. 2005; Hewitt-Taylor 2005; Barlow et al. 2006). One of the most important consequences is the potential for parental fatigue and the need for a break from care giving (Emond & Eaton 2004; Hewitt-Taylor 2005; Thurgate 2005; Johnson et al. 2005). To date, research has focused on the day-to-day experiences of parents caring for children requiring complex care (Gravelle 1997; Noyes 1999; Dobson et al. 2001; Olsen & Maslin-Prothero 2001) with less attention on the impact of caring over time. There has been limited discussion in the literature of the changing needs of children as they develop, and the associated 207 208 H. MacDonald and P. Callery changes in parents’ views about respite. This paper presents a developmental map of care giving over time that was constructed from parents’ retrospective accounts of parenting a child requiring complex care. The developmental map describes the trajectory of care for children with complex needs from infancy through young adulthood and the parents evolving need for respite care. Methods The developmental map reported in this paper was one of the findings from a study investigating respite for parents of children requiring complex care (MacDonald, unpublished Thesis, University of Manchester, 2006). The study used an ethnographic approach that involved in-depth interviews, participant observation, eco-maps and document review. Following ethical approval from four Local Research Ethics Committees, participants were recruited using a purposive sampling approach. Nineteen mothers (four grandmothers) and seven fathers (three grandfathers) were recruited from respite facilities and community databases of ‘special needs children’. Thirteen nurses and four social workers were recruited from respite facilities, local authorities, hospital-based respite units and ‘special needs’ schools. In total, 43 self-selected individuals participated in the study. The children, whose parents participated in the study, had a variety of diagnosis. However, the children were selected by one of the investigators (H.M.)based on the care they required rather than their diagnoses. Care needs crossed diagnostic boundaries. These care needs included: administration of complex medications, suctioning, special diets, enteral feedings, bowel care, oxygen therapy and catheterization. The children were physically dependent on others for activities of daily living including mobility, speech, basic hygiene, feeding and toileting – activities where independence would typically be achieved by his/her developmental age. Although it was not one of the inclusion criteria, all of the children had major cognitive impairments. The participants and the interviewer (first author) mutually agreed on the interview setting. All parents were interviewed in their homes and all nurses and social workers were interviewed in their place of work. The interviews followed a conversational style in which participants were encouraged to talk about their experiences with respite care. A topic guide was used to prompt discussion of specific respite issues. In-depth interviews of 1–2-h duration were audio-taped, transcribed and coded. All data were stored and coded using a computerized qualitative data analysis programme, NUD*IST 6 (N6). Table 1. Initial coding Codes using participants’ words: Feeling desperate Stop the world I want to get off It got really bad for us It gave family breathing space Need to re-charge batteries Initial reluctance Need to give our heads a break Initially, the data were reduced into descriptive codes. These descriptive codes were derived from participants’ actual words or phrases, and rather than simply being used as labels, they both labelled and provided linkages between the data and my ideas (Morse & Richards 2002). Table 1 provides an example of the coding derived from parents’ responses to my question: ‘tell me about your feelings about respite’. Initially these were coded as free nodes (a file within N6 in which codes were simply listed and not placed into the hierarchical structure). Careful examination and questioning of the free nodes or codes ensued in order to identify possible connections. This questioning involved moving back into the data to reflect on the code, both within its greater context and up out of the data to possible linkages. Sample questioning included: are these feelings limited to before ever receiving respite or did these feelings arise every time a break was due? Did both mothers and fathers experience these feelings? How does initial reluctance fit with these feelings about need? The descriptive codes were then organized into categories from which explanatory schemas were formulated. The code ‘initial reluctance’ seemed different from the other codes. As the data analysis was concurrent with data collection, it influenced the ongoing revision of topic guides. Therefore, on subsequent interviews, participants were asked what respite was like when they were first provided the service compared with the present time. This type of questioning that requires the participants to reflect upon and talk about now and then is what Spradley (1979) refers to as contrast questions. Examination of the data and constant comparison led to the development of a coding frame. Data were examined in their context (‘thick description’). To achieve thick description the data (interviews, observations and field notes) were summarized, synthesized and extracted such that they reflected the essential components of the context (Morse & Richards 2002). Using the example of the topic node cited previously, ‘feelings about a break’ was looked for across all sources of data and then to the literature ‘needs for a break’ and ‘benefits of respite’ to make any theoretical links. The multiple sources of data and the different approaches to analysis added © 2007 The Authors Journal compilation © 2007 Blackwell Publishing Ltd, Child: care, health and development, 34, 2, 207–213 Journey through time depth and dimension to the phenomenon under study. Findings related to care giving over time and the need for respite care follow. Findings: a developmental map of caring for a child requiring complex care So you tend to sort of have a mental image of yourself drifting along just looking after a baby really, until she changed schools, secondary schools, and I suddenly realized well she’s not a little girl and a baby anymore, you know she’s a teenager now. (Mother 14S Lines 350–354) Parents of children requiring complex care described their role in care giving as a process that began with the birth of their child with an illness or disability and continued indefinitely. ‘And you know, [I’ve] sort of grown up with this child with a disability. Yes, I mean I’ve never known any different, that’s sort of how she was when she was born’ (Mother 14S). Considerable similarity was noted between parents’ descriptions of their experiences, with only a single parent presenting as an alternate case. This parent was actually the child’s grandparent. As her son had died, the grandmother had invested her caring with a particular moral and emotional context that may explain the differences in her account. Commonalities in experiences crossed categorical boundaries. As parents reflected on their experiences there were identifiable strands that were best captured in a map. The map identifies broad periods of transition for children requiring complex care and the corresponding response from parents. According to the parents, nurses and social workers, the need for respite evolved over time. The parents vividly recounted their evolution from initial reluctance to use respite services, to feelings of desperation for a break. Although parents’ retrospective accounts relied on memories that can alter over time, the pattern that emerged was consistent with nurses’ and social workers’ descriptions of the changes in children’s needs and parents’ responses over time. The developmental map illustrates how developmental changes in the children are intricately related and cumulative in terms of parental needs, services and policies. Parents explained their care giving in terms of key developmental transitions experienced by their children. These developmental transitions were broader than established developmental categories but explained transitions for this selected group and included infancy, starting school, infant to junior school and high school through young adulthood. At each transitional point, the child requiring complex care changed to a new environment, changed in physical growth, but continued to 209 require care that was consistent with infancy. The transitions were developmental and predictable. Throughout the child’s developmental transitions, the parents were responsible for meeting the care needs of the children. The care needs of the child created psychosocial needs for the parents along with environmental and home needs. Table 2 illustrates the developmental transitions experienced by the children and the implications of these changes for parents. The map demonstrates that parental needs, like the transitions, were repeated across the sample, so they may be predictable and assist service providers to anticipate needs and plan supports. Using the anticipated needs as a guide, service providers could then work with families in developing an individualized plan for support. As a result of the aforementioned children’s and, therefore concomitant parents’ needs, the families were in contact with support services. In Table 2, the key formal and informal supports are documented to correspond with the developmental transitions along with parents’ and professionals’ experiences with respite services. Finally, the policies that impact on each developmental phase are presented. Infancy Infancy, the initial stage of care giving that parents described, is a period when the child’s special needs are obscured by the normal needs of all infants. ‘I’ve never known any different because she’s been like that since a baby, and people expect babies to keep you awake at night’ (Mother 14S Lines 280–281). Disabilities and care needs are disguised by the characteristic dependency associated with the infant stage of development. During this early phase of caring, parents received support from family and friends who were comfortable in assisting, for much of the care fit with ‘normal’ infant care. Parents suggested that health visitors focused on the typical aspects of infant care and this allowed parents to uphold an appearance of normalcy. Healthcare professionals recognized the need for intervention at this early stage in order to prevent crises later on, but limited resources prevented them from doing so. Policy statements influencing the care and services available to such parents identified these as ‘parents in need’ but unless parents requested intervention, intervention was not forthcoming. There was no legal requirement for the development of a registry of parents who had children requiring complex care, and information about respite was not readily available. Parents described a continuation of infant care until their children started school, at which time it became much more obvious that their children were different. During this stage © 2007 The Authors Journal compilation © 2007 Blackwell Publishing Ltd, Child: care, health and development, 34, 2, 207–213 Infancy Normal infant care plus technology. Frequent illness. Physical regime additional but not onerous. Accommodating special needs within normality. Watching development and recognizing delays. Adult relationship tensions. Infant supplies. Safety measures for young child. Grandparents, neighbours, friends within ‘normal’ range of infant care. Hospitalization for frequent illnesses. Health Visitors (HV) focus on normal infant care (perceived lack of confidence in additional aspects).‘Parental collusion’ with HV normalization Perceived importance of this phase to prevent later crisis but limited resources to intervene. Parental roles and responsibility. Children in need. Focus on care in home (principles). Influencing factors Care needs of child Psychosocial responses of families Environmental and home adaptations Family experiences of support Parents’ experiences of services Professionals experiences of services Policy statements influencing care and services Table 2. A developmental map: caring for a child requiring complex care © 2007 The Authors Journal compilation © 2007 Blackwell Publishing Ltd, Child: care, health and development, 34, 2, 207–213 Statementing. Children Act; health and safety of paid carers does not apply to parental carers. Formalized care (school) highlights differences. Tensions in kin/friend: end infant care and adaptation to age. Child does not have friends of same age. Constant presence of child. Play schemes viewed as childminding and vulnerable to cuts therefore unreliable. Entrée to formal support limited. Waiting. Some using respite. Initial reluctance. Concerns about ‘knowing the carer’. Vigilance. Trust versus Mistrust. Contact with school nurse begins. Adopt diagnostic approach (i.e. denial, grieving). Status of school nurse (care entrepreneurs, continuity). Planning. Fear of future for child. Fear of loss of support and services. Fear of long-term future for child without parents. Refers to caring as managing business. Continuance of care but increasingly intense. Feelings of desperation. Loss of identity and recognition of lost dreams. Feelings of entitlement towards respite. Caring is a job. Concerns about quality. Fragmentation telling story over and over at assessment, no follow up, lacking continuity. Need to demand or negotiate. Respite means overnight stay. Need a break but miss child and worry about quality of care. Later, enjoys respite and feels dependent on it. Play schemes viewed as respite. Social workers concerned that assessment raises expectations. Rely on parents. Perceived parental loss of identity. Assessment mandatory but provision not. Informal disappearing due to growth of child and ageing grandparents (some emotional but no physical support). Respite important. Age 18 change to adult status. Inequity as a result of parental articulateness. Compensation driven by being fair. Feelings of inequity a lever to obtain more services. Flexibility and appropriateness a high priority. Parent enjoys respite. Fear losing services and protects what they have. Home institutional-like. Organized around child’s needs and equipment. Reliant on services. Overnight respite important. Change to adult services at 18 years. Care needs procedural, timely, very intense, dominate family life Growing bigger. Infant needs highly visible. Intense supervision. Continuing dependence Physical regimen more burdensome due to growth. Fewer illnesses. Appearance changing with obvious differences. Beginning acceptance. Maternal reports of feelings of depression loneliness, isolation and fatigue. No time for other children. Constant responsibility. Caring is full-time work. Continuance of safety and supplies Lifts, hoists, special fluids. Highly organized. Institutional-like High school – young adulthood Infant-junior school Starting school 210 H. MacDonald and P. Callery Journey through time known as ‘starting school’ parents reported that care giving was increasingly onerous. Mary explained the increasing difficulty in caring for her daughter: I can’t imagine giving up caring for her, although I’m sure a time will come as she gets older, I mean she’s a lot heavier now, she’s quite a big girl, she weighs about eight stone and I do find that moving around, even changing a nappy, is getting more and more difficult. It’s not like lifting a baby’s legs up anymore. She’s heavy physically; she’s become more of a problem. (Mother 07 Lines 180–185) Parents experienced fatigue, depression, boredom, isolation and an inability to work outside of the home. The continuation of infant care combined with the special needs made it difficult for parents to allocate time to siblings. Family and friends were less involved. Jackie commented: ‘Coz you don’t get family or anybody, people say when they’re babies, and they put them in a buggy, oh I’ll take him off you, but now that he’s older, like talking, they don’t want to know’ (Mother 01L Lines 208–211). Some parents accessed respite at this time but most were reluctant to seek such formal support. They were vigilant in their care giving and experienced difficulty in acknowledging that they needed help in caring for their own children. Parents utilized play schemes but associated these with ‘childminding’ rather than respite. At this time, parents had their first interaction with school nurses. Meanwhile, health professionals used diagnostic terms such as ‘denial’ and ‘grieving’ to describe parents. Parents expressed frustration with the ambiguities in policies that supported the health and safety of paid workers but not for parents. Infant-junior school Moving to ‘infant-junior school’ highlighted the next major transition for the children. The children were growing bigger and infant care needs were highly visible. Intense supervision was required. Parents described feelings of desperation, a loss of identity and recognition of their lost dreams. Family homes became institutional-like with lifts, hoists, special chairs, special fluids and supplies. Space in the home was limited and therefore highly organized. Informal support was disappearing. In some cases, family and friends were uncomfortable caring for children with complex care needs, while in other cases the parents did not want to impose on them. Mary explained: they would say, oh God no, I can’t possibly do that, and it was a lot of people’s attitude, and you forget that some 211 people that aren’t used to dealing with children like that, are frightened that they’re going to do something wrong. And even now, tube feeding, you know, and a lot of our family wouldn’t give her a tube feed, and naturally it’s a lot easier and safer than feeding her, when she was choking. (Mother 07 Lines 399–408) Parents typically began to seek formal support in the form of respite at this time. It took them time to develop trust in outside carers but their desperation for a break triumphed over their feelings of guilt and caution. Claire described the tension parents experienced between needing a break and feelings of guilt and caution: About 9 [started respite]. She hated it, and she wouldn’t eat or drink. She constantly vomited, she was only ever in for one night, and although it had got to the stage then that Tom and I were getting really tired, and we knew she hated it, and we knew she was going to make herself vomit and she wouldn’t eat, and the next day we spent the whole day giving her drinks to re-hydrate her. We just needed a night a month off. I know it sounds bad . . . Quite a few times we felt like saying we’re just not bringing her back. But you go through another month, and you’ll be absolutely wrecked, you know tired out. (Mother 14S Lines 505–528) Parents reported fragmentation of respite services. They became frustrated with having to repeat their story. Healthcare professionals found themselves in a dilemma. National policies mandated an assessment of families within a defined time frame; yet, limited resources prevented assigning the family respite care. Healthcare professionals believed that the assessment gave parents a sense of false hope when the reality was that they could be on a waiting list for years. Another tension arose out of differing opinions. Parents equated respite to an overnight break where their children left home whereas some healthcare professionals recognized play schemes, short (2–3 h) breaks and in-home assistance as respite. High school through young adulthood The final stage ‘high school through young adulthood’ was discernible by the increased intensity of the care giving. Family life evolved around the care of the child. The home was highly organized. Parents were using respite services but were increasingly worried about the future care of their children. At age 18, care services changed and both parents and healthcare profes- © 2007 The Authors Journal compilation © 2007 Blackwell Publishing Ltd, Child: care, health and development, 34, 2, 207–213 212 H. MacDonald and P. Callery sionals reported this as a period where there existed a huge gap in services. Joe expressed the typical parental concern about the future: I think the diligence is borne out of, she’s our child, it’s borne out of affection and I don’t think you can ever hope to replicate that in a respite environment or a hospital environment or in a living residential care environment. We’re looking ahead. Hannah’s 15 now, what’s the situation going to be like when she’s eighteen, twenty, twenty-one, are we going to look after her forever or are we going to let go, and that’s quite sad. (Father 10 Lines 363–373) Creation of the developmental map enabled a portrayal of the broad illness trajectory, the consequences of care giving over time and services experienced by the parents. Discussion In this paper, a developmental map presented describes the trajectory of care for a group of children with complex needs. Previous studies have examined the course of a chronic illness over time (Gravelle 1997), the transition from child to adult services (Beresford 2004), the difficulties in acquiring respite (Beresford 1996; Olsen & Maslin-Prothero 2001) and the meaning of respite (MacDonald & Callery 2004). Respite has been discussed as an unmet need, but there has been limited consideration of how the need for respite may change over time. As in many cases, parents are caring for children with complex needs from infancy through the death of either child or parent, it is to be expected that respite needs will change as children develop, parents themselves grow older and their family circumstances change. The developmental map of caring for a child requiring complex care outlines parents’ retrospective reports of these changes in care giving. The developmental map is organized around the care needs of the child, the psychosocial responses of families, environmental and home adaptations, family experiences of supports, parents’ and professionals’ experiences of services and policy statements influencing care and services as children progress through four broad developmental stages. Inclusion of the children, their parents, professionals and policies, and the interplay between each of these factors in the matrix of the map allows for a more complete overview of transitions that occur while caring for children requiring complex care at home. Such a comprehensive overview of caring for children requiring complex care may provide the basis for a holistic approach to the provision of care. The developmental map illustrates how parents’ views on respite change over time. Timing is a factor that impacts on the provision of appropriate respite care. Uptake of respite services by parents closely follows the development of the children. During infancy, when care giving is consistent with the norms of infant care and when the children are physically smaller, short breaks provided by family, friends and outside agencies were reported by parents as being beneficial. Later, as the children grew bigger and heavier, care giving became more physically demanding. As a result of the physically demanding care and the ageing of relatives (grandparents), family support with physical elements of care diminished. These factors were cumulative, resulting in parents who were physically and mentally exhausted and who equated respite with survival (MacDonald & Callery 2004). As a result, short breaks were no longer adequate in giving them a break. At this point, parents described out-ofhome, overnight respite as a necessity. As noted, the developmental map links with a number of policy statements that influence parents caring for children requiring complex care. Nurses and social workers, involved in respite services, perceived the policies as sometimes being difficult to implement without generating false hope for the parents. For example, the Quality Protects (DOH 1999) policy that mandated a parental assessment within 7 days was perceived as being misleading to parents. The initial assessment might lead parents to believe that respite care was imminent when in actuality they could be on a waiting list for respite for months or years. Parents may benefit from regular reviews that identify their changing needs and assist in matching resources to these needs. Care plans, based upon the developmental map, could develop along with the family experience in care giving. In that way, resources may be better matched to parents’ needs and in many cases service needs could be anticipated. Indirectly, parents may benefit from professionals and services who are assigned to them soon after presentation of their children’s special needs. Early intervention and continuity would enable the professionals to work from knowledge of the full trajectory of care giving rather than from a given point in time. Nurses and social workers could use this knowledge to provide parents with anticipatory guidance as they approached transitions in their children’s developmental stages and the resulting care needs. While parents in the study did not ask for forecasts of their future in caring for children requiring complex care, they did express frustrations about the contingent nature of the respite supports they received. The developmental map may provide a framework for discussing parents’ changing needs over time and how services might be adapted to meet them. © 2007 The Authors Journal compilation © 2007 Blackwell Publishing Ltd, Child: care, health and development, 34, 2, 207–213 Journey through time Conclusion A developmental map of care giving was developed from a study investigating respite for parents of children requiring complex care. The map (Table 2) identifies broad periods of transition for the ‘child in need’ and the corresponding impact on the parents who are the carers. According to the parents and nurses in the study, the need for respite evolves over time. Given this evolution of need, a developmental map might prove beneficial to parents as well as service providers. Further study on the utility of the developmental trajectory is necessary. Such inquiry could lead to the further recognition of the changing needs of parents and provide a tool that will be useful in planning and coordinating care. Acknowledgement We want to thank Dr Cheryl Gibson for reviewing the paper. Key messages • Current literature focuses on the day-to-day issues of caring for children requiring complex care with little attention to the long-term experience for the parents. • The respite needs of parents of children requiring complex care change over time. • Changes in respite needs follow the trajectory of care for such children and are plotted as a developmental map. References Abbott, D., Townsley, R. & Watson, D. 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