Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for ...their child. The challenges these parents are confronted with may lead to specific care needs. In this paper we explore the spiritual dimension of caring for a child with a life-threatening condition from the parents perspective.
We held an exploratory qualitative study with in-depth interviews with parents of children (0-21) with life-threatening conditions. Interviews were transcribed and subsequently thematically analyzed.
Twenty-four parents of 21 children participated in the interviews. The spiritual dimension is an important, although not always visible, aspect of the experience of parents dealing with their child's illness. The main domains with regard to spirituality were: 1) identity; 2) parenthood; 3) connectedness; 4) loss or adjustment of goals; 5) agency; 6) navigating beliefs and uncertainties; and 7) decision-making. Parents also reflected on their spiritual care needs.
The spiritual dimension plays a central role in the experiences of parents who care for children with life-threatening conditions, but they receive little support in this dimension, and care needs often go unnoticed. If we want to provide high-quality pediatric palliative care including adequate spiritual support for parents, we should focus on the wide range of their spiritual experiences, and provide support that focuses both on loss of meaning as well as on where parents find growth, joy or meaning.
This article describes a qualitative interview study exploring how parents of children (0-21) with a life-threatening condition experience the spiritual dimension. The results indicate that spiritual aspects play a central role in parental caregiving, however their spiritual needs often go unnoticed. Parents need more adequate spiritual care.
Aims
To evaluate the effectiveness of the hospital‐family holistic care model based on the theory of ‘Timing It Right’ in caregivers of patients with permanent enterostomy.
Design
A prospective ...randomized controlled trial.
Methods
One hundred and twenty‐five caregivers of patients with permanent enterostomy were recruited from 1 May 2017–31 August 2019. They were randomized into either intervention group (N = 62) or control group (N = 63). The control group received routine care and follow‐up, while the intervention group received routine care, follow‐up, and hospital‐family holistic care intervention based on ‘Timing It Right’. The care ability, psychological distress, and life quality of the caregivers were evaluated between the groups before the intervention, at discharge, and 3 and 6 months after discharge.
Results
One hundred and eleven caregivers completed the study (88.8%). At 3 and 6 months after discharge, the care ability and life quality in the intervention group were significantly better than those in the control group (t = 8.506/9.783, t = 22.652/26.179, p < 0.05) based on the t tests, and the psychological distress was lower than that in the control group. The ostomy adaptability of the control group was significantly lower than that in the intervention group (p < 0.001) based on the t tests, and the χ2 test showed that ostomy complication was more than that in the intervention group (23.81% vs. 12.90% and 34.92% vs. 19.35%; p < 0.05) at 3 and 6 months after discharge. The interaction between time and group showed that the effect of time factor varied with the group and the four evaluation indexes in the intervention group gradually improved with the extension of the observation time and were better than those in the control group based on generalized estimating equation model.
Conclusion
The hospital‐family holistic care model based on ‘Timing It Right’ can effectively improve the care ability of caregivers of patients with permanent enterostomy, reduce psychological distress, and improve the quality of life.
Impact
The caregivers of patients with permanent enterostomy showed dynamic changes in their care experience and needs at different stages of the disease. The hospital‐family holistic care intervention strategy based on ‘Timing It Right’ can effectively improve the caregiver's care ability, alleviate psychological distress, and improve the quality of life. Additionally, improving the patients' stoma adaptability and reducing the incidence of complications related to ostomy.
摘要
目的
评价基于“适时”理论的医院——家庭整体护理模式对肠造口患者护理人员的有效性。
设计
一项前瞻性随机对照试验。
方法
2017年5月1日至2019年8月31日期限, 共计招募125名永久性肠造口患者护理人员。此类护理人员被随机分为干预组 (N=62) 和对照组 (N=63) 。对照组接受常规护理和随访, 而干预组将接受常规护理、随访和基于“适时”理论的医院——家庭整体护理干预。应分别在干预前、出院时、出院后3个月和出院后6个月对两组护理人员的护理能力、心理压力和生活质量进行评估。
结果
共计111名护理人员完成本项研究 (88.8%) , 分别在出院后3个月和6个月进行t试验, 试验结果表明, 干预组的护理能力和生活质量明显优于对照组 (t=8.506/9.783,t=22.652/26.179,p<0.05) , 且心理压力明显低于对照组。t试验结果表明, 对照组的造口适应性明显低于干预组 (p<0.001) , 而χ2试验结果表明, 术后3个月和6个月, 对照组的造口并发症明显多于干预组 (23.81%对比12.90%,34.92%对比19.35%;p<0.05) 。时间与组间的交互作用表明, 时间因素的影响因组而异, 干预组的四项评价指标随观察时间的延长而逐渐改善, 并且根据广义评价方程模型, 治疗组优于对照组。。
结论
基于“适时”理论的医院——家庭整体护理模式能够有效地提高肠造口患者护理人员的护理能力, 缓解其心理压力, 并提高其生活质量。
影响
不同患病阶段, 永久性肠造口患者护理人员的护理经验和需要呈动态变化。基于“适时”理论的医院——家庭整体护理干预策略能够有效地提高护理人员的护理能力, 缓解其心理压力, 并提高其生活质量。此外, 可通过上述干预策略提高患者造口的适应能力, 并减少造口相关并发症的发生。
To explore adolescents' experiences of having a parent with heart disease.
This qualitative study was performed with semi-structured individual interviews.
Interviews were conducted with 33 ...adolescents between 13 and 19 years old, who either had a mother or father with one of these diagnoses: ischemic heart disease, arrhythmia, heart failure, cardiac arrest or heart valve disease. The parent had been ill for at least 6 months and up to 5 years. The study was carried out in Denmark, Norway and Sweden between 2019 and 2022. The analysis was inspired by Reflexive Methodology.
Three central themes emerged: Response to parental heart disease; Growing up ahead of time; and Strategies in a changed life situation. For the adolescents, heart disease was experienced as an acute and lethal disease that put their parents' lives in danger. New routines and roles not only changed everyday life within the family but they also enhanced maturity and appreciation of life. To maintain a balance in life, the adolescents pursued normality and sought a safe space to have a normal youthful life.
In a period known to be significant for development, life with parental heart disease appeared as a biographical disruption because adolescents renegotiated their identity to manage their new life situation.
It is important to help younger family members adapt to parental heart disease by informing them about possible reactions and supporting them in how to adapt to their new life by seeking breaks and normality.
No patient or public involvement.
In the midst of a ‘care crisis’, attention has turned again to families who are viewed both as untapped care resources and as disappearing ones. Within this apparent policy/demographic impasse, we ...test empirically theorised trajectories of family care, creating evidence of diverse patterns of care across the lifecourse. The study sample, drawn from a Statistics Canada national survey of family care, comprised all Canadians aged 65 and older who had ever provided care (N = 3,299). Latent Profile Analysis yielded five distinct care trajectories: compressed generational, broad generational, intensive parent care, career care and serial care. They differed in age of first care experience, number of care episodes, total years of care and amount of overlap among episodes. Trajectories generally corresponded to previously hypothesised patterns but with additional characteristics that added to our understanding of diversity in lifecourse patterns of care. The five trajectories identified provide the basis for further understanding how time and events unfold in various ways across lifecourses of care. A gap remains in understanding how relationships with family and social network members evolve in the context of care. A challenge is presented to policy makers to temper a ‘families by stealth’ policy approach with one that supports family carers who are integral to health and social care systems.
Often family members provide care‐giving, which allows older adults to remain in their homes. With declining health and increasing frailty, care‐giving of elderly people becomes a task of family ...caregivers (FC) in conjunction with home care nurses. It has been shown in both acute care settings and long‐term care facilities that family members prefer to be involved in decision‐making and care planning for their next of kin. Therefore, an integrative review was conducted to explore the body of knowledge of FCs’ involvement in home‐care settings from the FCs’ perspective. CINAHL, PubMed, and Cochrane databases was searched with the terms family caregiver, involvement, home care, and community dwelling. Studies written in German or English between 1996 and 2017 focusing on FCs’ caring for home‐dwelling older adults together with home care nurses were included and critically appraised. The extracted findings were analysed with concept analysis method. Twenty‐six studies were included and five themes were identified. Four themes formed the basis of assistance towards family caregivers by nurses and included “relationship building with professionals,” “negotiating with professional care,” “being professionally supported,” and “managing role expectations and knowledge sharing”. The fifth theme, “working together” described the mutual care for the care recipient. Although the first four themes were consistent with a pre‐existing conceptual model by Sims‐Gould and Marin‐Matthews (2010), the fifth required an expansion of the model with an additional contribution “collaborative practice”. The findings illustrate that involvement in care is an interactional process, which provides the basis for collaborative practices with the home care nurses for family caregivers. Family members often want to be part of the healthcare team, and nurses need contextual factors that allow providing their full range of skills and knowledge to involve family caregivers accordingly.
This study investigates determinants for offering help to family members, neighbours and friends, based on the Informal Care Model. We do so in pooled representative data for the Netherlands ...collected in 2014 and 2016 (persons >17 years, n = 13,165). One‐third provides informal care to a person with health problems or impairments: partners (4%, n = 671), parents or children (16%, n = 2,381), distant relatives (6%, n = 858), friends or neighbours (6%, n = 839). Marginal effects show differences in the associations of care‐giving relationships with sociodemographic factors, barriers and beliefs. Helping a partner is related to age, gender (older people and men are more likely to help) and household composition (singles help less often). Care for close family is given often by 45–64 year olds, women, multiperson households and those with strong family beliefs. Helping second‐degree relatives correlates with age (young people help more often), barriers (those living with children help less often) and beliefs (people with professional background in care and people who attend church or mosque helping more often). Providing non‐kin care is associated with age and education level (young people less likely to help, people with a high education more likely), barriers (having a fulltime job) and beliefs (work experience in care, church or mosque attendance and norms). The supply of care to partners and close family is mainly associated with sociodemographic factors and barriers while the provision of care to distant family and non‐kin is also correlated with beliefs. If desirable policy is to create more informal care, investment in the combination of work and informal care, childcare and supportive arrangements for older community living couples is recommended. It also might be worthwhile to enhance beliefs about the usefulness of helping each other in times of need.
Research has highlighted the importance of health and social care professionals' collaboration with family caregivers. In the field of mental healthcare, involvement of family members is perceived as ...beneficial to the recovery process of the care recipient. Furthermore, family care‐giving is an essential part of elderly care. It is well documented that family members need support to prevent negative consequences of care‐giving. Nevertheless, involvement of and support for family caregivers have not developed into a common practice, and research has identified professional barriers to collaboration with family caregivers in several areas. The aim of this study was to explore professionals' experiences of collaboration with family caregivers of older persons with mental health problems, and how they understood their responsibility towards families. We conducted three focus group interviews with 18 health and social care professionals working in community‐based services, in three rural municipalities in Western Norway. The thematic analysis by Braun and Clarke guided the analysis. The findings in relation to the professionals' role and responsibility towards family caregivers are presented in three themes: family caregivers – a resource that needs support; a responsibility with unclear boundaries; and balancing different needs. Professionals recognised family caregivers' need for support and acknowledged the importance of family relationships. However, they experienced dilemmas in performing their dual responsibility of caring for the older care recipient as well as the family member, which they described as having unclear guidelines. They also experienced that they had insufficient knowledge to take on this responsibility. We argue that the exercising of discretion is essential for the professionals' responsibility, and that clarification of their responsibility is needed. We recommend a stronger focus in education on developing competence in the family perspective. Furthermore, the apportionment of professionals' responsibility needs to be formalised, especially when several services are involved in providing care.
For families with children diagnosed with complex illnesses, the COVID-19 pandemic added many challenges. In order to mitigate inevitable disruptions in pediatric care settings, caregivers may need ...added supports and resources. The Keeping Hope Possible (KHP) Toolkit is a self-administered intervention intended to enhance caregiving experiences of parents with a child with multiple needs. However, little is known about effectively disseminating the Toolkit.
A qualitative, thematic analysis was conducted to explore the opinions and perceptions of pediatric nurses and allied healthcare providers (HCPs) in relation to the dissemination and use of the KHP Toolkit for use by families with complex medical needs. Structured interview data were analyzed from a sample of seven pediatric HCPs working in various care settings in one Canadian province.
Five themes were developed including: Recognising Importance of the KHP Toolkit; Needing Support and Direction; Implementation and Use of the KHP Toolkit; Realizing Important Considerations for Success; and, Emphasizing Connection through Isolated Times.
Participants recognized the importance of the KHP Toolkit for parents and extended family in a variety of settings to encourage self-care, daily structure, and connectedness. Thus, pediatric nurses' awareness and openness to the initial dissemination of the Toolkit is essential, and a subsequent interprofessional team approach will ensure consistent reminders and support for families.
Careful assessment of family readiness for learning about and using the KHP Toolkit is essential, along with an interprofessional approach to consistent inquiry and support at each family encounter.
•The KHP Toolkit has potential positive effects for a wide range of family members•Pediatric nurses can support dissemination of the KHP Toolkit, and advocate for interprofessional involvement throughout•Awareness, understanding, and openness to the Toolkit will support dissemination•Assessment of family readiness for learning about and using the Toolkit is critical
Introduction
China’s traditional culture makes rural women and men take on different family responsibilities.
Methods
Use “China Family Panel Studies” (CFPS) data and build Logit and propensity score ...matching models to empirically study the impact of children care and elderly care on rural married women going out to work. And explore the welfare effects of basic education public services in helping rural women take care of their families.
Results
The results show that caring for children has a significant hindering effect on rural married women’s job hunting. Especially for those in low-income families, the employment inhibition is most significant among women aged 20–30 with multiple children. Contrary to previous cognition, supporting the elderly has a certain weak stimulating effect. The kindergarten public services in rural areas can help women take care of their children and relieve their work pressure. The primary school public services have not played a role in alleviating them.
Discussion
This shows that there are still a large number of female laborers in rural China who are unable to go out to work due to family care. The improvement of rural basic education public services can promote more rural women going out to work. This finding will provide a policy reference for the introduction of a formal care system and the establishment of basic education public services in China.
PDF
