Nursing Books on Families With Children With Chronic Illnesses
Highlights
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Children may better sympathise status management within the context of routines.
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Children develop perspectives about their condition and its management.
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Children'south reports are consistent with the family unit direction framework.
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Children may not have insight almost long-term implications of their status.
This qualitative study described children'due south (viii–xiii years onetime) perspectives of their chronic wellness weather condition (e.one thousand., asthma, diabetes, cystic fibrosis): how they perceived their condition, its direction, and its implications for their futurity. The study used the family direction way framework (FMSF) to examine child perspectives on the joint venture of status direction between the child and family. Children within this age group viewed condition management in ways similar to their parents and take developed their own routines around condition management. Futurity studies of this miracle comparing child and parent perspectives would farther our agreement of the influence of family direction.
Fundamental words
- Status management
- Chronic health conditions
- Schoolhouse-anile children
- Childhood
- Family
- Management
- Long-term conditions
CHILDREN WITH CHRONIC wellness conditions (CHCs) acquire how to manage their conditions through everyday life experiences with their families, peers, health providers, and others in their communities. While almost studies using children's perspectives describe disease specific management issues and tend to be more skill related, not-categorical or non-illness-specific issues are largely disregarded (
). Non-categorical studies, because they may exist applied to a multitude of weather condition, may be of special benefit to future clinical practise, health intendance policy, and inquiry (
Rolland, 1994
- Rolland J.S.
Families, disease, & inability: An integrative treatment model.
- Google Scholar
). The purpose of this qualitative descriptive report was to systematically describe the understandings of status direction from the perspectives of school-aged children (8–xiii years) with a variety of CHCs.
Schoolhouse-aged children are transitioning from concrete ways of thinking to cognitive thought processes that are more complex and intellectual (
Vygotsky, 1967,2004
- Vygotsky Fifty.South.
Imagination and creativity in childhood. [Article]. [Voobrazhenie i tvorchestvo v detskom vozraste,[1967].
- Google Scholar
). Children's agreement also varies co-ordinate to everyday experiences. The lives of children with CHC are filled with daily reminders and potential learning experiences related to their status (
,
). Although the family unit remains the chief source of information and guidance for the school-aged kid, sustained encounters outside the home and family environment provide opportunities for expanded experiences (
). Thus, school-anile children with CHCs begin to acquire how to navigate life and their conditions outside the home. Their families are and so challenged to expand condition direction from the home to include the school and the community equally their children engage in these settings and rely more on adults exterior the family structure (
).
The family management style framework (FMSF) (Figure 1) was developed using symbolic interactionism (
) to depict the process of family management, identifying how families define the condition, manage it, and perceive the consequences of the condition (
Knafl et al., 2012
- Knafl K.A.
- Deatrick J.A.
- Havill Due north.Fifty.
Connected evolution of the family management way framework. [Inquiry Back up, Due north.I.H., Extramural Research Support, Not-U.South. Gov't Review].
- Crossref
- PubMed
- Scopus (94)
- Google Scholar
). The FMSF has been used to explore family management of a variety of conditions in a non-chiselled or not-disease-specific manner and to identify the domains or categories that are common beyond disease entities, with findings applicative to a wide range of health conditions (
Knafl et al., 2012
- Knafl One thousand.A.
- Deatrick J.A.
- Havill N.L.
Connected development of the family management style framework. [Research Support, Due north.I.H., Extramural Research Support, Non-U.South. Gov't Review].
- Crossref
- PubMed
- Scopus (94)
- Google Scholar
). The major components within the framework, including definition of the state of affairs, management behaviors, and perceived consequences, provide us with the parents' perspectives on not-disease specific condition direction, that is, how they see the child and the condition, the amount of endeavor it takes to manage the status and the disruption the condition causes the family, and the way the parents are thinking about the kid's time to come (
Knafl et al., 2012
- Knafl G.A.
- Deatrick J.A.
- Havill N.50.
Connected development of the family unit management manner framework. [Research Support, N.I.H., Extramural Inquiry Support, Non-U.S. Gov't Review].
- Crossref
- PubMed
- Scopus (94)
- Google Scholar
). The FMSF was developed predominantly from data gathered from the parents of children with CHCs, but equally tin can be seen from the framework, differentiates family members and the person with the condition. This study adds the perspectives of schoolhouse-anile children with CHCs within the context of family direction and describes how these children understand their condition and incorporate it into their daily lives.
Blueprint and Methods
This qualitative, descriptive report identified the perspectives of schoolhouse-aged children with CHCs using directed content assay. Directed content analyses are based on an a priori framework that guide the creation of interview guide and analytic codes (
). The FMSF dimensions (defining, managing, and perceived consequences of the condition) directed the evolution of the interview guide also as the analysis of the interviews. Data were collected through interviews with children who had been diagnosed with a CHC for at least six months and were between 8 and thirteen years of age. A half-dozen-month lag from diagnosis ensured that the kid and family unit had time to sympathise the reality of the diagnosis and develop an approach to status management.
Setting and Sample
Thirty-two children with a variety of CHCs were recruited from three ambulatory clinics (endocrine, hematology, and pulmonary) in a large pediatric infirmary located in the northeastern U.Southward. Both the hospital and the university with which it is affiliated granted IRB approval for the study prior to any recruitment activities. A purposeful, maximum variation sampling strategy was used to recruit a sample with a wide variety of status experiences (
). A three-pronged approach to recruitment was used: one) clinic recruitment via posters in the waiting room and referral from the health intendance provider; 2) mailings to families meeting the inclusion criteria; and 3) word of mouth. Interested parents contacted the study via phone or render mail enquiry, were contacted by phone, provided exact consent, and and then provided screening information regarding inclusion criteria and condition characteristics. If the screening criteria were met an appointment for the home interview was fabricated. At the offset of the interview, the starting time writer who was principal investigator reviewed the report data with the parent and the child, answered any questions, and obtained informed consent/assent. It was made clear throughout the process that participation was voluntary.
Data Collection
The first author conducted the interviews betwixt June 2012 and January 2013. Most of the interviews (n = 30) were held at participants' homes, although two families preferred to meet at an alternative setting, i at the local YMCA and the other at the university. While the qualitative interview information were collected from the kid with a CHC, the parent completed demographic information and surveys virtually the child and the family (Table i). For reporting purposes a primary/recruitment CHC was identified for each child; all the same, over half of the children in the sample had more than one CHC.
Table 1 Characteristics of study population.
| Characteristic | Due north (%) or hateful (range) |
|---|---|
| Parent | 32 |
| Female parent informant | 30 (94%) |
| Age in years | 41 (32 to 51) |
| Household income (US dollars) | 11 (xxx%) less than $30,000/year |
| 3 (9%) $30,000–$59,000/year | |
| iv (13%) $60,000–$99,000/twelvemonth | |
| 13 (41%) over $100,000/year | |
| 1 (three%) Non reported | |
| Educational Level | 24 (75%) graduated from college |
| Race/Ethnicity | 10 (31%) Black |
| 1 (3%) Hispanic | |
| 21 (66%) White | |
| Child | 32 |
| Age in years | 10.4 (8 to 13) |
| Male | 18 (56%) |
| Primary diagnosis | |
| Asthma | thirteen (41%) |
| Diabetes | 8 (25%) |
| Cystic fibrosis | iv (13%) |
| Hemophilia | 2 (six%) |
| Hereditary spherocytosis | ane (3%) |
| Phenylketonuria | 1 (iii%) |
| Sickle prison cell disease | 1 (3%) |
| Eosinophilic gastrointestinal affliction | 1 (3%) |
| Chronic sinusitis | 1 (three%) |
| Interview location | |
| Home | 30 (94%) |
| Local YMCA | 1 (3%) |
| School of nursing | 1 (iii%) |
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The in-depth, semi-structured interviews were conducted using open up-ended questions focused on children's descriptions of their families, what information technology was like to be diagnosed with a CHC, what typical school and weekend days were like, and how they perceived their futures. The interview guide was adult with consideration for the developmental historic period and abilities of the children participating in the study. Initially, the interview guide was developed from the aims of the study, directly inquiring how the children perceived their condition, managed it, and understood its consequences. In consultation with researchers experienced in conducting interviews with children, the interview guide was revised to a more conversational format. The questions dealt with the child'due south everyday life, an area where they realized they in fact were the experts (Tabular array two). The interview guide was piloted with two children, and a few very small changes were made based on the feel of the interviewer and child feedback.
All interviews were digitally recorded and transcribed verbatim by a transcription service. Child interviews lasted between 23 and 81 minutes; although some children seemed a little shy at the beginning, none refused to be interviewed and, once they began telling their stories and realized that there were no wrong answers, they seemed much more than comfy.
Information collection stopped when saturation on major themes was reached and no new information emerged from the child interviews (
). The interviewer wrote field notes shortly after leaving the family homes/interviews to certificate impressions and reflections then as to amend the accuracy and thoroughness of the descriptions.
Data analysis
Analyses of the children'south responses were conducted using directed content analysis methods (
,
), which immune for the identification of categories related to the children'south perspectives on family unit management of their CHCs. We attempted to remain close to the children's own words and meanings while using our current cognition regarding the FMSF to guide or sensitize the inquiry (
). The initial code list was developed using the definitions of domains and categories within the FMSF, revised to reflect the likely perspective of children. Coding of the interviews began with receipt of the first verified transcript. Each subsequent transcript was read and coded for the child's perceptions of his or her condition, management behaviors, and consequences. Codes were then modified and grouped into categories. Constant comparison was used for subsequent interviews, allowing for analysis both of the individual information and across cases (
). Data drove was complete when saturation of major themes was identified (
). Atlas-ti (ATLAS.ti Scientific Software Development GmbH, Berlin, Germany), a qualitative data management software plan, was used to maintain and sort the interviews and related data.
Several strategies to ensure trustworthiness and brownie were used. The lead author conducted a methodical review of each interview and documented the conclusion process throughout the written report, using audit trails. An experienced qualitative researcher (JD) listened to interviews and conducted an audit of the analyses of the data, using the inspect trails equally a guide. In addition, the researcher participated in a weekly qualitative commonage—a group engaged in the study of qualitative methodologies—that provided feedback and confirmation of analysis process throughout the written report.
Results
The 32 children in the report were between 8 and thirteen years old (Chiliad = 10.4 years). In that location was a range of family unit incomes and diversity of race in the sample (Table 1). Although the child was the primary informant and focus of the written report, the parent (mother = 30) provided all of the demographic information as well equally the status feature information (Tabular array 3). Status characteristics were described as the 1) onset of the condition (acute or gradual), two) progression of the condition (relapsing/remitting, progressive, stable), and 3) stigma their child experienced due to the status. These characteristics provided a fashion to describe the multifariousness of the sample across specific diagnoses (Tabular array 3). These data show that the parent described the onset, progression, and stigma independently of the diagnosis. For instance, of the eight children with diabetes, five parents described the onset every bit acute, whereas three thought it was gradual; two described the course equally progressive, two as abiding, and four equally relapsing; and v identified the condition every bit stigmatizing whereas three did not. These data show the multifariousness of this sample regarding fundamental characteristics both within and across diagnoses and support the potential of these children to provide data regarding the cantankerous cutting issues regarding family management of their chronic wellness atmospheric condition.
Tabular array 3 Diverseness across conditions. a Adjusted from categorization of chronic illnesses by psychosocial type (Rolland, 1994).
| Condition (n) | Onset | Course | Stigma | ||||
|---|---|---|---|---|---|---|---|
| Astute | Gradual | Progressive | Abiding | Relapsing | Yes—Stigma | No—Stigma | |
| Asthma (13) | 5 | 8 | i | 4 | 8 | iii | 10 |
| Diabetes (8) | 5 | three | 2 | 2 | four | v | 3 |
| Cystic fibrosis (5) | 2 | 3 | i | 3 | one | 4 | 1 |
| Hemophilia (two) | 2 | 0 | 0 | ii | 0 | 1 | 1 |
| Other (iv) | ane | 1 | 0 | 3 | 1 | two | 2 |
| Totals (32) | |||||||
| 2 diagnosed at birth; no symptoms/no onset | 15 | 15 | four | 14 | fourteen | 15 | 17 |
| Full past Category | 30 a Adjusted from categorization of chronic illnesses by psychosocial type (Rolland, 1994). | 32 | 32 | ||||
| Genetic | 5 | 3 | i | 8 | ane | half dozen | 4 |
| Adult | 10 | 12 | 3 | six | 13 | ix | xiii |
a Adapted from categorization of chronic illnesses by psychosocial type ( Rolland, 1994 Families, illness, & disability: An integrative treatment model.
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The results of the directed content assay presented here are organized according to the FMSF'south three dimensions: 1) definition of the situation; 2) management behaviors; and 3) perceived consequences. Within each dimension, categories are identified that explicate the perspectives of the children with CHCs who participated in the written report. These categories have been named using a phrase from the child interview that best represented the child perspective.
Definition of the Situation
As the children described what their CHC meant for them, important elements related to having a chronic health condition were identified and defined. Children spoke virtually how they felt compared to their peers and siblings, what fabricated their twenty-four hours easier or harder, what they worried about in regard to the condition and what gave them feelings of conviction or command over the condition. Quotes from the children were used to identify the themes and are as follows: They desire usa to be similar regular kids, Sometimes I get scared, And so nosotros're good, It'due south pretty easy for us to handle/it'southward hard for us crusade it's not normal, and Mom and Dad agree/disagree. The school-aged children in this study readily described what information technology meant to them to take a CHC.
They (Parents and Providers) Want us to be Like Regular Kids
The interview began with a wide question asking the children to "…tell me a footling bit about yourself?" Only a few children included the CHC in their brief introductions. Instead, most gave their historic period and grade, and they talked virtually the activities they and their friends enjoyed. Almost children had to exist prompted to begin talking about their status even though they had had an agile role in the assent procedure and knew the written report was focused on how their status afflicted them, both at home and away from home. They too described their daily activities differently; some readily alluded to trips to the nurses' office for treatments during their school day, whereas others who also did those activities did not mention them.
Children talked about the things they were able to do that were typical and made themselves experience typical, comparison themselves to their siblings or friends. They also spoke near the means that the condition express them and their power to participate in activities and made them experience different. Children often described that management of their wellness status could be hard for them, either every bit hard for them to learn or hard for them to follow the recommended treatments, or both. They did, yet, recognize that their abilities and agreement had inverse over time as they had matured and developed.
Children discussed the way they and their friends dealt with the condition and the support the friends provided and how that fabricated them feel typical, specially friends who had the same condition. "…yous have to be able to push it bated…. you can't get 'oh, I can't go with my friends cause my diabetes is messed up.' You kind of don't accept to think about it all the time" (11-year-onetime, type 1 diabetes). For some children the condition was not a big problem, but rather something they recognized fabricated them unique and they were proud of. Other children had more than difficulty incorporating the condition into everyday life and stated that information technology was difficult, made them experience very different than those around them, and felt that people did not really understand what information technology was similar.
Sometimes I Get Scared
Reflecting their awareness of the seriousness of their condition, the children discussed whether their parents worried almost them or if they worried most themselves. They were particularly aware their parents worried about them within the context of remembering the reaction at diagnosis. Statements such as "…she wasn't worried about it at that time crusade I wasn't similar…older yet" (nine-year-old, type 1 diabetes) showed an sensation of the potentially serious nature of the diagnosis and the likelihood that information technology would change in the future.
In terms of the children's worries, equally i child with asthma stated, "Basically, when I'm swimming, sometimes I go scared and I'1000 similar 'Oh, no, what'south going to happen?' I get scared that I won't exist able to breathe" (thirteen-yr-former, asthma) There were also children on the other side of the spectrum who did non think the status was very serious. I male child with asthma stated, "Mine'due south merely really weak…. The asthma's weak. I don't even think I need the medication" (11-yr old, asthma).
A few of the children spoke of cognition they had regarding the status that fabricated them worry. Some children with diabetes were aware of the potential for amputations and renal failure when they were older, and a child with asthma told of knowing a friend who died because his asthma was non controlled. This information confirmed the seriousness of their status, merely equally one young boy stated, "That kind of scares me. That pretty much convinces me to become my claret carbohydrate downward all the time" (11-yr-erstwhile, type 1 diabetes).
And Then Nosotros are Good
Children'southward agreement of their status was axiomatic in their discussion of symptoms and symptom management. The children's agreement regarding their diagnosis, symptoms, and treatments varied widely. All knew the name of their condition. Though some children had an intimate understanding of the condition and why treatments were given, others did not know how they got the status, what medications they were taking, or what the medications did.
Children talked most doing things to decrease symptoms and manage the status, equally well as plans that were in place should something happen. Children with asthma spoke of stopping to remainder and catch their breath and of drinking water, and children with diabetes would check their blood sugar if they were not feeling well and prior to strenuous activities. Many children had cell phones that enabled them to keep in contact with their parents regarding condition updates while they were abroad from home. Having access to parents seemed to increment the children's confidence. 1 girl stated that access to her parents allowed her to handle her glucose levels when abroad from home and immune participation in activities with her friends without directly adult supervision. "I have my own emergency prison cell phone…. I always have it … call [female parent's] jail cell, I'm like, 'oh, I'g here,' or 'hullo, I'm low' or whatsoever. Then I'll go to sleep…l keep my phone right beside me… Examination, tell [female parent] my blood sugar, and and then nosotros're adept" (11-year-old, type 1 diabetes).
It is Pretty Easy for the states to Handle/It is Hard for us Because information technology is not Normal
The participants in the report spoke of their impression of incorporating management into daily intendance; what made having the condition easy or hard both within the home and during outside activities. Children identified having the family unit showing support and understanding, telling how the family let them exist in control relative to their handling regimen when possible, including planning for outings and activities, as things that made having the status easier. At school, children who described relative ease of management discussed having understanding teachers and nurses, an ability to integrate care into the everyday routine (e.g., keeping an inhaler in their desk, permission to have actress snacks), and a flexible schedule that immune the pupil to do what needed to be washed and still participate in the important classroom activities. As ane child with allergies said, "I don't have bad allergies…no, just similar I'thousand anaphylactic…so if I bear on information technology, I go a hive. If I eat it, then that's when I'll need an Epipen" (viii-year-old, cystic fibrosis, allergies).
Alternatively, some children expressed difficulty managing the condition and the style it fabricated them feel different. As some other child with cystic fibrosis confided, "I didn't really want information technology. It'southward non good. I don't like it and I desire to go rid of information technology" (9-twelvemonth-erstwhile with cystic fibrosis). Children reporting more difficulty conveying out management inside the home said it was hard for them to perform the treatment correctly and at that place was no one to remind them or assistance them problem solve. These children had trouble remembering treatments and medications. These kinds of incidents threw off the kid'south day and made it difficult to go back on track. At schoolhouse, teachers or staff who didn't sympathise their condition and prevented them from getting the treatment they needed made direction more hard. Although this grouping was a minority, they spoke of the frustration of non being listened to when they believed they needed to do something.
Mom and Dad Concur/Disagree
The majority of children believed that their parents ever agreed on the approach used in condition direction. Only one child in the study identified an area where his parents did not agree on a direction activity. This disagreement revolved around the child's power to give his own insulin injections: "…mom just doesn't want me to practice information technology, but I don't know why. She idea that I did information technology the wrong style … My dad, he does think I tin do information technology, just I call back no" (9-year-old, blazon 1 diabetes).
The rest of the children described agreement betwixt the parents with regard to direction and identified either one parent as their primary betoken person or shared responsibilities between both parents. Most often the mother was identified as the primary person, although the male parent was readily identified as existence the backup. Other children talked about each parent having discrete activities he or she took responsibility for or the child and parent sharing management responsibilities.
Management Behaviors
Management of the status refers to efforts directed toward caring for the condition and incorporating information technology into everyday life, both for children and their families. This section does non identify tasks associated with management that would be condition-specific, but rather describes the children's perspectives on overall condition management activities and how they make sense of them.
They Do It for My Health and Stuff
Children were able to discuss why condition management was important and connected to specific strategies for such management. As might exist expected given the developmental stage of the participants, the children had simply a very bones understanding of why condition management was important, but generally understood it was to continue them salubrious. They talked of activities such equally checking in to brand sure treatments were done, reminders about schedules, and actively getting treatments and medications ready.
The children besides reflected on the ways the family accepted and trouble solved the diagnosis and how it helped them frame the status for themselves. 1 child talked about how her parents were proactive in learning about the diagnosis and incorporating information technology as a normal part of their kid; "…he [Dad] [looked up Olympians with diabetes] said he looked them upward, 'Simply to let y'all know your dreams will never be crushed because of this.' That helped" (12-yr-one-time, type 1 diabetes). For this child it meant having diabetes did not mean she did not have to give up other aspirations and goals.
Children frequently talked nigh the goals they had playing games or sports, but were less likely to talk about goals in terms of condition management. One child, however, conspicuously identified his personal goal of remembering to take his pill every morning without being reminded. Children as well had treatment preferences based upon their priorities. One child with diabetes talked well-nigh changing the type of insulin she was taking so she could take more control and worry less most whether she could eat something. Two children with cystic fibrosis talked about the time it took for treatments and giving priority to a method that did the job only took less time. These children understood the need to keep healthy counterbalanced with their goals and desires in other areas of their lives.
I Exercise It, They Practise It, and We Practice It
Children discussed the way routines and related strategies for management of the condition were incorporated into everyday life. 3 means of doing things were apparent from the children'south perspectives. They used "I" statements to explain management activities they did on their own (e.k., I bank check my blood saccharide, I take my treatment, and I do it myself). Children used "they" statements to identify management activities outside of their control. Finally, children used "we" statements, talking about management every bit a joint venture betwixt them and their parents.
It is Just Kind of My Schedule
The children also described how they developed their own routines and related strategies for condition direction and incorporated them into everyday life. Ane child with asthma explained her strategy for participating in sports while keeping her asthma under control, assessing how her body felt, and doing things that helped her with endurance and relaxation;When I run, I but run like two laps. I run out of breath, I walk, then I run again, I run out of breath, so I walk for another couple of laps, then I jog while I breathe really heavy, and later on nosotros stretch a piddling fleck and in that location's this 1 stretch called the goalie stretch where you lot only lay down and you stretch your whole torso. That kind of relaxes me (10-twelvemonth-erstwhile, asthma).
Children in the written report often talked almost their view of condition direction in relation to the school solar day: what they did before, during, and after school. Furthermore, treatments were tied to schoolhouse and activity-related events, not clock fourth dimension (e.g., medications or treatments were done before lunch, during the second recess, or before taking the passenger vehicle home). This likewise carried over to afterward-school activities, where treatments were tied to going to practice, trip the light fantastic or instrument lessons, and bedtime. Children looked at their daily routines every bit a series of events. Children as well spoke of the endeavor they needed to accept care of their condition and how management was incorporated into the school day or disrupted school. For example, they spoke of having to leave grade early on to go to the nurse's office for treatments, blood glucose testing, or other medications at prescribed times during the twenty-four hours. Over the weekend or on non-school days, the major differences were stated in terms of the schoolhouse day.
Children also identified routines or schedules for occasional activities such every bit vacations or trips, and what had to happen or what planning needed to occur to ensure that the proper medications and technology were taken along. They also spoke of what needed to happen in club to slumber over at a friend's house or at the grandparents' home. Some children were also aware of the routines associated with appointments, describing the need to go every 3 months for an HbA1C check or once a year for pulmonary role tests. One student athlete with both diabetes and asthma reported that he often had to stop before, during, and later on practices or games to cheque his blood glucose level or take inhalation treatments, and also he had to take rescue inhalers on the sideline. Parents were oftentimes at the games, which provided assurance that medical needs could be handled.
To Tell or Not to Tell
Children spoke of the part that telling others played in the direction strategies. Some were very clear that others needed to know in order for them to maintain their health status. This was evident beyond all atmospheric condition when children spoke of participating in activities outside of the home and recognizing the risk of others not knowing in example they needed help. Two children stated that it was a group endeavour, and ane said his friends would actually ask him if he was okay sometimes: "If I'm interim similar upset or angry all the time, they'll but exist similar 'Okay, are you alright? Do you demand to do your matter or whatever?' I'm similar 'Yeah, I'll go test' and they're normally right" (11-year-old, blazon one diabetes).
Other children were more private, saying no ane actually needed to know. One girl said people knowing might injure your chances of getting a job you lot really need, and another explained a friend had teased her, so now she does not tell friends.
Children described the process that occurred inside the family in lodge to manage their status, and they reported varying personal command. Some of the participants had very little control beyond following the instructions they were given for status management by the health intendance provider or the caregiver or passively watching the caregiver, but all were aware of status management and the approaches and attitudes of the people around them.
If They Were Non Hounding Me, I Would Non be This Free
Children described the way their family incorporated condition management into family unit life and what it meant to them. The children spoke of their view of family life and also of their parents' and their own satisfaction with the management.
Many children spoke of the family'due south focus outside the realm of condition management, citing activities the family did together. Whether playing golf game, watching the Three Stooges, or traveling, children recognized when their family was focusing on family life and when they were also focused on their status. One kid suggested that families should have "check-ins" to recap the week in social club to place what worked well and what may demand to modify. This may be the kid'due south recognition that occasionally the family unit focus needs to come up dorsum to the condition for a brief period of time in order to evaluate the procedure.
Two children recognized that the focus was on the condition when parents were doing or assisting with treatments. Complexity was added for the caregivers when they were helping with treatments, and siblings were vying for the parents' attention. Children believed they should be the priority during that time and thought parents should control siblings.
Some children spoke of the attending or focus that was on the condition as a necessary part of family life, and that was accepted. One child recognized the family's adjustment to her condition every bit putting more than responsibility on everyone, but acknowledged that they were able to have on these additional challenges. Another kid explained her perspective when she contrasted her family unit's focus to that of another child she knew, explaining her family unit hounded her well-nigh the things she needed to do, but over time it allowed her to be gratis to do it all herself while her friend had no stability because his parents never helped him out and he was left to figure things out by himself. Other children told about the family nutrition that had changed for everyone, non only the child with the chronic condition, in conjunction with the diagnosis and diet restrictions.
Consequences
The consequences theme related to how children viewed the future in light of their CHC. This was a hard expanse for near children to address in relation to managing their status. The children did recognize the things they were currently doing were different from what they had done when they were younger, just had limited insight into what might be expected of them in the futurity. Some identified more than typical life changes that they expected to occur, such as going to college, getting married, having a family. A few children were very technology oriented and described changes that might occur if scientific advancement in status treatment was made.
I Might Have a Totally Different Life When I am Older
The future was not something many of this group of children spoke of readily inside the context of their CHC. Many children spoke of having more responsibilities or being more than responsible in the future, although what those responsibilities would be and what being more than responsible meant was largely left unsaid. Coupled with the expectation that responsibilities would increase was the implied understanding that parental responsibilities would subtract. As one kid stated when reflecting on the future, "…it's a little bit harder 'cause you have all the responsibilities., similar your parents don't assist you out with everything like when yous're my age" (11 twelvemonth old, type 1 diabetes).
Children spoke vaguely about the implications of their condition for their futurity and the family unit's hereafter. Expectations centered on changes in handling and changes in expectations for self and the family. Some of the school-aged children in the written report had "techie" looks at the future, imagining fourth dimension machines so they could await ahead and see the future. Ane child imagined "tech pads" that would test claret sugar, and another child seemed to be well versed in potential technological developments that may be on the horizon, talking almost the "bogus pancreas" and the FDA approval process.
Children expected change in the hereafter, although they did not explicate what form the modify would take. Children expressed dubiousness concerning the hereafter in terms of medication and treatment requirements, and they imagined a future in which their parents would non be readily assisting with their care and where they would possibly be living on their ain. Several children talked about future changes related to the need to be employed, and two children talked of having their own family one 24-hour interval. "I might accept a totally dissimilar life when I'grand older. Maybe I would get a house, maybe I would get a chore, and perhaps I would become a life" (8-year-sometime, hemophilia) was the poignant annotate of one child.
Word
The results of this written report support the applicability of the FMSF every bit a framework to explore the perspectives of school-aged children with a diverseness of CHCs. In telling their stories, the children discussed the meaning the condition had for their life, the management efforts required, and the expected consequences of the condition and management needs. Although not all areas were discussed with the same depth and description, the children provided rich descriptions of the significant and management components, and showed the beginning development of agreement of the condition consequences and future considerations.
Definition of the State of affairs, the first dimension of the FMSF, examines the subjective meaning family unit members attribute to of import elements of their situation (
). From the adult perspective, kid identity and view of status are foundational to family unit management as parents' behavior most the child's capabilities are tied closely to their understanding of the condition and the associated demands and limitations (
Knafl et al., 2012
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).
, in an analysis of adolescents with spina bifida, also noted the importance of identity for adolescence and the potential for this to influence the relationship between the adolescent and the family. This was similar to our findings with the children in our study, who were comparing themselves to siblings and classmates and talking of ways they were similar or different. Studies examining families of children with CHCs have institute that the connections betwixt families and children tin have great impact with positive family relationships leading to amend health outcomes (
Cohen et al., 2004
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,
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,
) and negative family relationships leading to declines in children's wellness (
,
). Children are making connections betwixt perceptions of how their family makes significant from the status and how they sympathize their condition. Additional research is needed to understand the human relationship betwixt family management, child identity and these important health outcomes.
Direction behaviors represents the efforts directed toward caring for the condition and adapting family life to condition related demands and incorporates family unit beliefs virtually the status in addition to the goals, priorities and values the guide the arroyo to management (
Knafl et al., 2012
- Knafl Yard.A.
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- Havill N.L.
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). Of special interest, the development of routines for managing the condition is an important attribute of condition direction that helps families (
).
Bedell et al., 2005
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and
also highlight the importance of having the whole family involved in these routines, and having routines both at abode and for condition-related responsibilities to be washed exterior of the domicile. Family rituals, whether exceptional (due east.g., birthday celebrations, holidays) or daily (mealtime, games, or reading), promote a positive family surround and health-related quality of life (
). Families and children with CHCs, recognizing the importance of rituals and routines as a way to integrate affliction intendance into family life and to subtract emphasis on the illness itself, can positively influence both family and child outcomes (
Knafl et al., 2013
- Knafl Yard.A.
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Patterns of family management of childhood chronic conditions and their relationship to child and family unit functioning. [Enquiry Support, N.I.H., Extramural Research Support, Not-U.S. Gov't].
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). For example, children with CHC in this study viewed their condition management around their daily activities, including before and later on school. Therefore, communicating about condition direction within the context of family routines may enable parents and children to problem solve their responsibilities and fulfill their roles.
Perceived Consequences examines the remainder between condition management and other aspects of family life and the implications for the child and family's future (
Knafl et al., 2012
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). When children talked about the status itself, it was not ordinarily oriented toward the future; rather, information technology was about changes over time since they had first been diagnosed or from when they were younger. Some spoke nearly the status existence easier to handle considering they were older and understood more about the status, whereas others spoke about how the status may have gotten better or worse over fourth dimension. Consequent with other studies in which older children demonstrated stronger linguistic communication skills and higher levels of cognitive functioning (
Coyle et al., 2007
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), the younger group tended to be more concrete and had relatively less insight into several of the dimensions. Although these findings are typical within the developmental expectations, of importance is the caste of insight and perspective of the older group. These findings prove the developmental progression and changes in cerebral agreement.
The findings also back up the expectation that condition management is a two way street, with both the child and the family unit having perspectives and influencing the procedure. Knowing that family management is a miracle that resonates with families and also with children with CHC provides the foundation for exploration of this unique perspective and its relationship to both family unit and kid outcomes. There are certainly other variables, including those in the contextual influences of the FMSF that are both ecology (i.due east., family unit situations, social determinants of health) and kid-specific (development, health condition) that place in context and influence these dimensions. Findings from this study near intra-family processes, however, are important for practitioners, researchers, and families to consider as we work to prepare children with chronic health conditions to become adolescents assuming more of their health care management on a daily basis.
Implications for Practise
In a report published by the World Health Organization,
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acknowledged, "In clinical interactions with younger children, management decisions are made 'adult to adult' by health professionals in consultation with parents, and mean solar day-to-day disease management is generally undertaken directly past parents." (p. viii). The findings here support the demand for health intendance professionals to include children at a much younger age, realizing that children with CHC are listening and forming perspective regardless of their intentional inclusion or exclusion. The American Academy of Pediatrics supports that approach, recommending children to be included in visits as early on as age four in society to get comfy speaking with the wellness care provider. The academy also recognizes that some children as young as 9 or x may have concerns or questions nearly their health that they want to discuss with the provider alone, although others this age may not be ready for this (
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). Including the schoolhouse-aged kid in discussions tin can help the child better understand and plan condition management when away from the parents and help the family create means to support the child in this developmental endeavor (
). One can imagine that a program to develop the necessary toolbox with the child and family will aid support and ease transitions from family-focused management to self-care in the adolescent and immature adult.
Concern is high regarding the transition of pediatric patients to developed intendance (
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); the goal is to have the transfer washed in a timely and safe manner. This is especially truthful of specialty pediatric practices that see children and families with particular chronic health atmospheric condition. The evidence in this study focuses on the issues that concerned school-aged children, peculiarly their cocky-identity, view of the condition, and management approach. Issues were not oft mentioned almost futurity responsibilities and expectations, ways to resolve disharmonize apropos condition management, and decision-making within the health care context. Efforts need to be placed on building upon a developmentally advisable awareness of future management goals to attain preparation for transition. For instance, children were able to accomplish the tasks of care, just were not aware of anticipated changes that may occur with puberty, as they enter centre school, or equally a general form of the condition. Helping to prepare children for anticipated changes and providing skills tin help children manage these changes.
Though schoolhouse-aged children with CHC are not ready to be the principal determination maker, they are enlightened of many limitations, implications, and useful strategies for management relative to their condition. If they are not included in goal setting, creating strategies to run across the goals, and evaluating the outcomes reflectively, they may non develop the appropriate skills for decision making as they enter adolescence and young machismo. Health care providers usually have years, starting at diagnosis, to help children with CHCs and their families focus on problems primal to condition direction and fix for the transition to adult care. It would be beneficial to develop the mindset that this training should include the child from the diagnosis forwards.
Limitations
There are some limitations to this study that must be acknowledged. Although there was considerable multifariousness in this sample of schoolhouse-aged children, the participants all were treated at the aforementioned big children'south hospital, which may accept led to some homogeneity in the treatment experience, especially within clinics. Additionally, these children were typical for historic period related to cognitive development, and children with cognitive impairments might have presented differently. Although the characteristics of the various conditions were various, the conditions were predominantly physical. Considering that some of the most prevalent CHCs among children are asthma, obesity, and mental health weather condition including ADHD (
), merely asthma was a primary diagnosis in this sample, and ADHD was a co-morbidity in four children. The diversity beyond race was also limited, and future studies should include participants with broader cultural experiences. The small sample size did not allow for comparing within and amongst subgroups marked by age, race, socio-economic status, or other of import variables. (Table 1)
Futurity Research
The electric current study shows that the FMSF tin can be used to investigate the perspectives of children with CHCs. Recently, iv unlike patterns of family unit management take been identified; family-focused, somewhat family-focused, somewhat condition-focused, and condition-focused (
Knafl et al., 2013
- Knafl M.A.
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- Knafl Thousand.J.
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- Grey Yard.
- Dixon J.
Patterns of family management of babyhood chronic conditions and their relationship to child and family performance. [Research Support, Due north.I.H., Extramural Research Support, Not-U.S. Gov't].
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). A mixed methods assay of the qualitative kid information and quantitative data from one of their parents is currently in progress. This analysis is exploring the similarities and differences between the parent and child perspectives of family management based upon the management blueprint.
Future enquiry to address the limitations of the current written report is needed. The electric current study sample was limited with respect to conditions represented and lacked cultural diverseness. As qualitative studies are often limited to a modest number of participants, the side by side step needs to be quantitative. Development of a family direction measure for children/adolescence would crave a larger sample and an opportunity to obtain a more diverse sample. With the evolution of a child measure to complement the family management measure (FaMM) we would have the ability to identify the strengths families and children accept to build on and weaknesses for which interventions might help to improve outcomes.
This study fills gaps in our science most school-aged children and their understanding of their CHC, how they and their families incorporate CHC into their daily lives, and family direction. The perspectives of children not merely adds important contextual understandings for the FMSF, but too helps us better encompass the family unit unit. In addition, the design of this study systematically considers choice of a sample based on the characteristics of the children's conditions and not on their medical diagnoses. These data, therefore, have the potential to be used to formulate a measure that fulfills a mandate set past the United States National Guideline Clearinghouse; that is, that we pattern measures and metrics that are sensitive to health phenomenon across populations and that tin be used to stratify subgroups in guild to examine whether disparities in health be amongst a diverse population of patients (
National Quality Measure Clearinghouse, 2014
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). Equally populations of children with CHC survive with more than and more intense and circuitous CHC, pediatric nurses are called upon to employ robust frameworks to identify those issues that not only take significance within specific settings but take the potential to be tested globally within and across potentially vulnerable and at risk children and families.
Conflict of Involvement
The authors take no conflicts of interest to declare.
Funding
The first author received fiscal support from the National Institute of Nursing Research, National Institutes of Wellness (T32NR007066; T32NR007100; F31NR011524; R01NR011589) and Sigma Theta Tau, 11 Affiliate.
Acknowledgments
The authors acknowledge and thank Phyllis A. Dexter for her editorial aid with this paper.
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Article Info
Publication History
Published online: November 14, 2014
Accepted: October 13, 2014
Received in revised form: October 7, 2014
Received: May 27, 2014
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DOI: https://doi.org/10.1016/j.pedn.2014.10.011
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© 2015 Elsevier Inc. Published by Elsevier Inc.
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