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.     

Developing services to support parents caring for a technology-dependent child at home

BACKGROUND: A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents at home. AIMS: To explore the experiences of families caring at home for a technology-dependent child; to examine their needs for practical and other support; and to examine how far services are currently meeting these needs. Methods In-depth interviews were conducted with the parents of 24 technology-dependent children and with 44 health, social care and other professionals. RESULTS: Services in the community were not sufficiently developed to support this group of families. Major problems were identified in the purchasing and provision of both short-term care/home support services and specialist equipment/therapies in the community. Service provision could be poorly planned and co-ordinated at an operational level and few families had a designated key worker. Parents felt that professionals did not always recognize either the emotional costs entailed in providing care of this nature or their expertise in caregiving. Information-giving to parents was often described as poor and participants reported that hospital professionals failed to negotiate the transfer of caregiving responsibility to parents. CONCLUSIONS: Services need to work in partnership with families and with each other at both strategic and operational levels, to develop integrated and co-ordinated services that can meet the needs of this group of families.     

Absolute involvement: the experience of mothers of ventilator-dependent children

Home care for a technology dependent child is stressful, costly, and time consuming, yet there is little research concerning the maternal caregiver experience. Sixteen mothers whose children required ventilators participated in this study. Using grounded theory methods, 32 interviews were examined to identify the core variable of absolute involvement, describing the provision of a mother's self-determined standard of care for her child. The Model of Absolute Involvement consisted of the attributes of mothering, meeting the demands of caregiving, and employing strategies of care. Implications for nursing practice are discussed in terms of skills and strategies mothers used during day-to-day activity     

Nurses' experiences of caring for children in pain

Aim To describe nurses' experiences when caring for children in pain. Background Earlier studies have shown that nurses are key actors in pain management and that there is a need to focus on the nurses' own experiences of caring for children in pain. Method Semi‐structured interviews were conducted with 21 nurses at one paediatric clinic. The data were analysed by means of content analysis. Results The interviews suggested that when a child's pain followed an expected pattern and they complied with treatment, the nurses trusted their knowledge and felt comfortable. On the other hand, in unpredictable situations the nurses felt fearful, powerless, abandoned and distrustful. Conclusion The nurses were comfortable in predictable situations, but if a situation was unpredictable, they felt they had lost control over it. Implications for pain management To reduce feelings of abandonment, work shifts should be organized so that more experienced nurses can work side by side with those who are less experienced. Pain assessment tools and guidelines for pain management should be introduced into the daily work, and systematic reflection should be used for nurses' professional development.     

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.     

Easing the strain: assessing the impact of a Family Fund grant on mothers caring for a severely disabled child

Summary Measures of perceptions of care-related stress and maternal adjustment were used to assess the extent to which receiving help from the Family Fund eases the stress of caring for a disabled child. A sample of 162 mothers completed a questionnaire before and after receiving help from the Family Fund. The findings suggest that the Family Fund has a significant impact on mothers' perceptions of the stresses of caring for their child, as well as improving mothers' wellbeing and adjustment. However, receiving help from the Family Fund did not improve mothers' perceptions of the severity of the child's disability or the extent to which the disability had adversely affected their personal lives.     

Key worker services for disabled children: the views of staff

Provision of 'key workers' for disabled children and their families, working across health, education, and social services, has been recommended in the Children's National Service Framework. This study investigated the views of staff of key worker services concerning the organisation and management of the services. Interviews were carried out with key workers (N=50), managers (N=7) and members of multi-agency steering groups (N=32) from seven key worker services in England and Wales. A response rate of 62% was obtained. Major themes emerging from the interviews were identified, a coding framework was agreed upon, and data were coded using the qualitative data analysis programme Max QDA. Results showed that although the basic aims of the services were the same, they varied widely in the key workers' understanding of their role, the amount of training and support available to key workers, management and multi-agency involvement. These factors were important in staff's views of the services and inform recommendations for models of service.     

Legacies of caring: the experiences and circumstances of ex-carers

Although there is extensive literature on carers and their care-giving role, the circumstances of carers after care-giving remains largely uninvestigated. This paper documents the socio-economic and psychological legacies of care-giving among 157 ex-carers who were included in a larger national study of the effectiveness and targeting of social security help to carers, which was carried out in 1989. Therefore, the sample included only those whose care-giving responsibilities had been relatively substantial, that is, over 35 hours a week. Survey data covering the employment status and income levels of these ex-carers are presented, as is in-depth interview material on the psychological and social circumstances of a small group of ex-carers. The article concludes that there are long-term negative financial effects of caring, which the social security system appears to ignore. In addition, the psychological, social and physical health consequences of caring may leave some carers poorly equipped for life after care, a situation which might call for the development of support services in the immediate post-care period. Further investigation of the material and non-material circumstances of ex-carers, preferably on a longitudinal basis, should be a priority in health and social care research. Without such research, our knowledge of the costs of caring borne by individuals, and our assessment of the appropriate contributions that should be made by statutory welfare agencies, remains incomplete. Finally, given the prevalence of informal care-giving, our lack of knowledge of the legacies of care-giving limits our understanding of the causes of income and health inequalities between people approaching pension age and older.     

Safety in home care: a broadened perspective of patient safety.

BACKGROUND: Home care is the most rapidly growing segment of the Canadian healthcare system. Overwhelmingly, research on patient safety has been conducted within institutional settings, resulting in a significant knowledge gap about safety in homecare. Given the dramatic increase in the amount, acuity and complexity of health care being provided in the home and community, it is essential to develop our understanding of safety in this sector. OBJECTIVE: The objective of this paper is to describe the landscape of safety in home care in Canada. METHOD: This pan-Canadian initiative included three phases: a literature review, 20 key informant interviews and an invitational roundtable. Data were synthesized using a content analysis approach. RESULTS: Patient safety is a failure of systems rather than of humans; there are many change processes required to create safe environments; organizational culture and workplace factors are critical. Patients have a key role to play in their care and thus must be part of the patient safety discourse. Themes central to safety in home care are: the inextricably linked relationships and communication among clients/families and caregivers/providers; unregulated and uncontrolled settings, autonomy and isolation; the multidimensionality of safety (physical, emotional, social, functional); a diminishing focus on prevention, health promotion and chronic care; challenges of human resources and maintenance of competence. CONCLUSION: Addressing safety in home care and mitigating the risks presents unique challenges and requires a major rethink of underlying institutionally oriented assumptions and guiding frameworks.     

The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’

BackgroundIncreasing numbers of children with complex health‐care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home.MethodsWe conducted a thematic analysis of eleven in‐depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life.ResultsWe identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life‐threatening), co‐ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep‐deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal.DiscussionThe burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health‐care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others.     

中国老龄社会新形态的特征、影响及其应对策略 —— 基于“七普”数据的解读

  目的  分析长期护理保险对中国城市老人健康水平、医疗支出和家庭照护的影响,为长期护理保险制度完善和老年人健康水平提升提供依据。  方法  收集中国健康与养老追踪调查数据（CHARLS）2013年、2015年、2018年3期面板数据,从中抽取2 278名 ≥ 60岁城市老人,将其中11个长期护理保险试点城市的798人为研究组,非试点城市的1480人为对照组。采用双重差分法（DID）分析长期护理保险对城市老人健康水平、医疗支出和家庭照护的影响,以及低龄老人和高龄老人之间的异质性。采用倾向得分匹配法（PSM-DID）进行稳健性检验。  结果  研究组的自评健康得分显著高于对照组（2.92 ± 0.87 vs. 2.62 ± 0.95,P = 0.04）,流调中心抑郁量表（CESD-10）得分高于对照组（9.93 ± 8.05 vs. 10.24 ± 7.08,P = 0.04）,组间健康自评得分差值为0.30（P < 0.01）,心理健康差值为 – 0.32（P = 0.02）,说明长期护理保险对老年人身心健康有积极作用;研究组老人每月医疗支出高于对照组（449.08 ± 1 024.42 vs. 220.43 ± 605.62元,P = 0.03）;研究组老人每月接受家庭照护天数（3.47）或小时数（41.47）低于对照组（均P < 0.05）。异质性分析结果表明,长期护理保险对低龄和高龄老人健康状况均影响显著,影响程度相近;仅对低龄老人的月医疗费用影响显著,对高龄老人的月家庭照护天数或小时数方面影响更大。  结论  长期护理保险总体提高了城市老人的健康水平,减少了家庭照护时间,但在降低老人实际医疗费用支出方面的作用仍十分有限。     

Parenting children requiring complex care: a journey through time

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.     

Fear in children with visual impairments from the perspective of their parents

The aim of this study was to investigate fear in children with visual impairments (VI) from the perspective of their parents. The study was conducted in Jordan. One hundred and eight parents were surveyed. Results revealed that the main fear contents in children with VI are fear of voices and social communication fears. There were no statistically significant differences between male and female children. Fear content differed as a function of age: six-year-olds feared certain factors more than five-year-olds; seven-year-olds feared the same factors more than six-year-olds. Furthermore, first-born children fear social communication significantly more than later-born children. Finally, various domains differed significantly according to disability severity.