________________________________________ 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 adult ...
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