Families' experiences of caring for technology-dependent children: a temporal perspective

In the present study, families' experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple 'technological', 'social' and 'natural' rhythms and routines around which the families' lives were variously structured. A purposive sample of 36 families with technology-dependent children who used one or more medical devices on a daily basis was recruited. Devices included feeding pumps, suction machines, dialysis machines and ventilators. Using mainly qualitative methods, children, parents and siblings were interviewed to establish what the care routines involved and how these impacted on family members. The authors found that the rhythms and routines of care varied across the sample, depending on the type and number of devices used, the individual child's needs, and who provided technical care during the day and/or at night at home and in other settings. While the children's health and quality of life benefited from the technology, the time demands of the care routines and lack of compatibility with other social and institutional timeframes had some negative implications for the children and their families, limiting their participation in school, employment and social life in general. The need to use and oversee the use of some medical technologies at night also meant that many parents suffered regular disruption to their sleep. In conclusion, the authors argue that the care of technology-dependent children at home places considerable time demands on families. Families have little or no access to suitably trained carers who can provide technical care required in the home or away from the home to give parents and the whole family a break from caring where required. More trained carers and short-term care provision, better coordination of services and improvements in the design of devices would all help to reduce the negative effects of the care routines on families.     

Families' experiences of caring at home for a technology-dependent child: a review of the literature

Recent medical advances have led to the emergence of a group of chronically ill children who are dependent upon technology for their survival. Many of these children are cared for at home by their parents. This paper presents an overview of the literature that has examined the experiences of families caring for a technology-dependent child at home. The social, emotional and financial impact on families and their perspectives on the services supporting them at home is described. The paper concludes by identifying areas where further research is needed.     

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

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

Towards integrated paediatric services in the Netherlands: a survey of views and policies on collaboration in the care for children with cerebral palsy

AIM: Worldwide, family-centred and co-ordinated care are seen as the two most desirable and effective methods of paediatric care delivery. This study outlines current views on how team collaboration comprising professionals in paediatric rehabilitation and special education and the parents of children with disabilities should be organized, and analyses the policies of five paediatric rehabilitation settings associated with the care of 44 children with cerebral palsy (CP) in the Netherlands. METHODS: For an overview of current ideas on collaboration, written statements of professional associations in Dutch paediatric rehabilitation were examined. The policy statements of the five participating settings were derived from their institutional files. Documents detailing the collaborative arrangements involving the various professionals and parents were evaluated at the institutional level and at the child level. Involvement of the stakeholders was analysed based on team conferences. RESULTS: Also in the Netherlands collaboration between rehabilitation and education professionals and parents is endorsed as the key principle in paediatric rehabilitation, with at its core the team conference in which the various priorities and goals are formulated and integrated into a personalized treatment plan. As to their collaborative approaches between rehabilitation centre and school, the five paediatric settings rarely differed, but at the child level approaches varied. Teams were large (averaging 10.5 members), and all three stakeholder groups were represented, but involvement differed per setting, as did the roles and contributions of the individual team members. CONCLUSION: Collaboration between rehabilitation and education professionals and parents is supported and encouraged nationwide. Views on collaboration have been formulated, and general guidelines on family-centred and co-ordinated care are available. Yet, collaborative practices in Dutch paediatric care are still developing. Protocols that carefully delineate the commitments to collaborate and that translate the policies into practical, detailed guidelines are needed, as they are a prerequisite for successful teamwork.     

Developing a health interview tool for Medicaid home and community-based services clients and home care aides through a community-engaged approach

We describe a community-engaged approach to develop and pilot a home care aide (HCA) administered health interview with Medicaid Home and Community-based Services clients. Stakeholders identified five priority health topics and selected a card sorting methodology for interviews. A barrier to interviewing clients was decreased communication skills among HCAs, and we modified health interview training to include communication training. Stakeholders reported the interview methodology was feasible within usual care, acceptable to clients, and contributed to increased knowledge on providing person-centered care. Stakeholder engagement resulted in valuable insights regarding the health interview methodology and relevant training needs.     

The FORTUNE training school in China: a support for mentally retarded children and their parents

A school for mentally retarded preschoolers has proved to be a support for their parents and families.     

Promising outcomes in teen mothers enrolled in a school-based parent support program and child care center

BACKGROUND: This study described a cohort of teen mothers and their children attending an urban high school with a parent support program and school-based child care center. Specific aims of the study were to describe maternal characteristics and outcomes, and child developmental and health outcomes. METHODS: A volunteer sample of 65 adolescent mothers enrolled in the parent support program and their children were interviewed, surveyed, and assessed. Fifty-three mothers had children enrolled in the school-based child care center and 12 mothers had their children cared for by family members. Maternal characteristics assessed included self-esteem and depressive symptoms, social stressors and support, self-perceived parental competence, parent-child teaching interactions, and subsequent childbearing and maternal educational outcomes. Child outcomes included child developmental assessments and health outcomes. RESULTS: About 33% of teen mothers were mildly to moderately depressed and 39% of the sample had experienced transitional homelessness. Social support networks were small; in the past 12 months, mothers experienced a mean number of 13.2 +/- 11.9 negative life events. Maternal self-report measures and mother-child observation measures indicated positive levels of parental competence. Maternal educational outcomes were positive, and only 6% of mothers had subsequent childbirths within 2 years. The mean scores on developmental assessments of children fell within the normal range, although there were 7 children identified with developmental delays. CONCLUSIONS: For at-risk teen mothers, this parent support program and school-based child care setting appears to offer promising opportunities to help young mothers with parenting, avoid rapid subsequent pregnancies, and stay engaged with school, while their children are cared for in a close and safe environment.     

Listen to me, too! Lessons from involving children with complex healthcare needs in research about multi-agency services

BACKGROUND: Children with complex healthcare needs are often excluded, both from active involvement in research projects and from direct consultation in services. During a 3-year research study into multi-agency services for children with complex healthcare needs, the authors involved children in a number of innovative ways and endeavoured to discover what impact, if any, multi-agency working made to them. METHODS: The researchers 'spent time' with 18 children with complex healthcare needs. They used a variety of methods to engage with the children in a meaningful way. More than half of the children had no verbal communication, so it was necessary in some cases to work with an advocate, usually the parent, to aid the process. RESULTS: Children with complex healthcare needs can take part in research as long as the research is set up sensitively and flexibly. In terms of the impact of multi-agency working, the authors concluded significant advances had been achieved for this group: almost all the children were living at home and attending school. However, there were significant gaps in addressing children's human rights in relation to communication, independence and relationships. In addition, many of the children had very little effective direct consultation with the multi-agency services. CONCLUSIONS: There are significant advances in involving disabled children in research and in service delivery, but there is still some way to go in involving those with complex healthcare needs. The challenges are considerable, but the benefits far outweigh these, not least being the value that parents, carers and the children themselves place upon being listened to.     

Assessing the written information given to families prior to their attendance at a child development centre

Summary This paper describes an analysis of the written information given to parents of pre-school children with developmental delay prior to their attendance at a Child Development Centre. Texts were analysed for their readability and human interest, and the usefulness of the information was assessed through consultation with parent consumers. The discussion of the results includes suggestions for staff who are involved in the development of client leaflets and booklets.     

The impact of a complex care clinic in a children's hospital

Background The number of medically complex and fragile children (MCFC) cared for in children's hospitals is growing, necessitating the need for optimal care co‐ordination. The purpose of this study was to describe the impact of a nurse practitioner/paediatrician‐run complex care clinic in a tertiary care hospital on healthcare utilization, parental and primary care provider (PCP) perceptions of care and parental quality of life. Methods MCFC and their parents were recruited for ambulatory follow‐up by the hospital team to complement care provided by the PCP in this mixed methods single centre pre‐ or post‐evaluative study. Parents participated in semi‐structured interviews within 48 h of discharge; further data were collected at 6 and 12 months. Healthcare utilization was compared with equal time periods pre‐enrolment. Parental health was assessed with the SF‐36; parental perceptions of care were assessed using the Larsen's Client Satisfaction Questionnaire and the Measure of Processes of Care; PCPs completed a questionnaire at 12 months. Parental and PCP comments were elicited. Comparisons were made with baseline data. Results Twenty‐six children and their parental caregivers attended the complex care clinic. The number of days that children were admitted to hospital decreased from a median of 43 to 15 days, and outpatient visits increased from 2 to 8. Mean standardized scores on the SF‐36 increased (improved) for three domains related to mental health. A total of 24 PCPs responded to the questionnaire (92% response); most found the clinic helpful for MCFC and their families. Parents reported improvements in continuity of care, family‐centredness of care, comprehensiveness and thoroughness of care, but still experienced frustrations with access to services and miscommunication with the team. Conclusion A collaborative medical home focused on integrating community‐ and hospital‐based services for MCFC is a promising service delivery model for future controlled evaluative studies.     

Different meanings of respite: a study of parents, nurses and social workers caring for children with complex needs

AIM: To examine the meaning of respite care to parents of children with complex conditions and providers. METHODS: In-depth interviews, participant observation and document review were used to collect data from nineteen mothers and seven fathers of children between the ages of 8 and 16 years who required complex care and from their respite providers, including thirteen nurses, and four social workers from three counties in North-west England. RESULTS: Parents described three categories of respite: short breaks provided by the extended family or friends, short breaks (3-4 h) by an outside agency, and overnight respite outside of home. They highly valued overnight respite outside the home. There was some overlap but also notable differences between parents' and providers' categorizations of respite care and the value attached to different forms of respite provision. Parents and nurses valued overnight respite outside the home unlike social workers who preferred to provide respite without separating children from their families. DISCUSSION: Appropriate provision of respite care and communication with parents requires understanding of the meaning of respite to parents. The meanings attached to respite care by parents and providers should be considered in attempts to understand and address problems of inappropriate provision and/or dissatisfaction with respite services.     

Developing a novel peer support intervention to promote resilience after stroke

Stroke can lead to physical, mental and social long‐term consequences, with the incidence of stroke increasing with age. However, there is a lack of evidence of how to improve long‐term outcomes for people with stroke. Resilience, the ability to ‘bounce back’, flourish or thrive in the face of adversity improves mental health and quality of life in older adults. However, the role of resilience in adjustment after stroke has been little investigated. The purpose of this study is to report on the development and preliminary evaluation of a novel intervention to promote resilience after stroke. We applied the first two phases of the revised UK Medical Research Council (UKMRC) framework for the development and evaluation of complex interventions: intervention development (phase 1) and feasibility testing (phase 2). Methods involved reviewing existing evidence and theory, interviews with 22 older stroke survivors and 5 carers, and focus groups and interviews with 38 professionals to investigate their understandings of resilience and its role in adjustment after stroke. We used stakeholder consultation to co‐design the intervention and returned to the literature to develop its theoretical foundations. We developed a 6‐week group‐based peer support intervention to promote resilience after stroke. Theoretical mechanisms of peer support targeted were social learning, meaning‐making, helping others and social comparison. Preliminary evaluation with 11 older stroke survivors in a local community setting found that it was feasible to deliver the intervention, and acceptable to stroke survivors, peer facilitators, and professionals in stroke care and research. This study demonstrates the application of the revised UKMRC framework to systematically develop an empirically and theoretically robust intervention to promote resilience after stroke. A future randomised feasibility study is needed to determine whether a full trial is feasible with a larger sample and wider age range of people with stroke.     

Network Supports and Resiliency among U.S. Military Spouses with Children with Special Health Care Needs

Understanding how military families who have children with special health care needs (CSHCN) successfully cope in the context of exceptional demands of the military lifestyle can inform scholarship, policy, and practice to the benefit of families. Using data from 775 female civilian parents (mothers serving as Key Spouses) married to active duty Air Force members, this study examined differences on dimensions of network support and spouse resiliency between mothers who do and do not have CSHCN, as well as the relative contribution of formal and informal network support to variation in self-reports of resiliency among mothers with CSHCN. Mothers with CSHCN experience significantly less formal and informal network support than their counterparts. Despite this, they reported equivalent overall resiliency, with lower perceived resiliency on only one of four resiliency outcomes. More formal and informal network support was generally associated with higher resilience. Implications for policy, practice, and research are discussed.     

Factors for Accessing a Medical Home Vary Among CSHCN from Different Levels of Socioeconomic Status

Purpose The purpose of this research study was to identify factors that are associated with receiving care in a medical home for children with special health care needs (CSHCN) and to identify how these factors vary among different socioeconomic levels. Methods Data were obtained from the National Survey of Children with Special Health Care Needs, 2000–2002. Access to a medical home was derived using an algorithm. This survey analysis also included demographic characteristics, geographical location of household, severity of condition, and social factors. Multiple logistic regression models were constructed for socioeconomic status (SES) levels defined by federal poverty level (FPL): <133%; 133–199%; 200–299%; ≥300%. Results Age group was significant in all but the 200–299% of FPL stratum. Severity of condition was significant in all strata. Race was significant in all but the ≥300% stratum. Maternal education was borderline significant in the lowest and highest strata. Insurance type/status was significant in all but the 133–199% of FPL stratum. Geographical location was significant in the lowest and highest strata. The language of the interview was only significant in the lowest stratum. The relationship of the respondent to the child was significant in the middle two strata. The total number of adults in the household was significant in the highest stratum, and the total number of children in the household was significant in the 200–299% of FPL stratum. Conclusions Factors affecting access to a medical home differed among socioeconomic groups. Future research should explore the CSHCN population by income groups to better serve this population.