Paediatric 'care closer to home':stake-holder views and barriers to implementation

In this study we explore the views of NHS stakeholders on providing paediatric ‘care closer to home’ (CCTH), in community-based outpatient clinics delivered by consultants. Design: Semi-structured interviews and thematic framework analysis. Setting: UK specialist children's hospital and surrounding primary care trusts. Participants: 37 NHS stakeholders including healthcare professionals, managers, commissioners and executive team members. Results: Participants acknowledged that outreach clinics would involve a change in traditional ways of working and that the physical setting of the clinic would influence aspects of professional practice. Different models of CCTH were discussed, as were alternatives for improving access to specialist care. Participants supported CCTH as a good principle for paediatric outpatient services; however the challenges of setting up and maintaining community clinics meant they questioned how far it could be achieved in practice. Conclusions: The place of service delivery is both an issue of physical location and professional identity. Policy initiatives which ignore assumptions about place, power and identity are likely to meet with limited success.

Stressors, mediators, and health care outcomes of home enteral nutrition in family caregivers and their older adult care recipients

Family caregivers manage home enteral nutrition (HEN) for over 77% of an estimated 1 of every 400 Medicare recipients. Increasing usage of HEN in older adults combined with reliance on family caregivers raises concerns for the quality, outcomes, and costs of care. These concerns are relevant in light of Medicare limitations on nursing assistance and non-reimbursement for nutrition services, despite annual costs of over $600 million. This study applied stress process theories to assess stressor, mediator, and outcome variables salient to HEN and caregiving. In-home structured interviews occurred with a multi-ethnic sample of 30 caregiving dyads at 1–3 months after discharge on HEN. Care recipients were aged ≥60 (M = 68.4 years) and did not have dementia. Caregivers were aged ≥21, unpaid, and lived within 45 minutes of care recipients. Caregivers performed an average of 19.7 tasks daily for 61.9 hours weekly. Training needs were identified for 33 functional, care management, technical, and nutritional tasks. Preparedness scores were low (M = 1.73/4.0), and positively correlated with competence, self-rated quality of care and positive feelings, and negatively with overload, role captivity, and negative feelings (Ps < .05). Caregivers had multiple changes in lifestyle and dietary behaviors. Lifestyle changes positively correlated with overload, and negatively with preparedness and positive feelings. Dietary changes positively correlated with number of tasks, overload, role captivity and negative feelings, and negatively with preparedness (Ps < .01). Fifty-seven percent of caregivers aged >50 were at nutrition risk. Care recipients fared worse. Average weight change was −4.35 pounds (P < .001). Physical complications interrupted daily enteral infusions. Water intake was half of fluid need and associated with signs of dehydration (P < .001). Physical and social function was poor, with older subjects more impaired ( P < .04). Those with better prepared or less overloaded caregivers had higher functionality and QOL (P < .002). Complications, type of feeding tube, and caregiver preparedness correlated with frequency of health care utilization (Ps < .05). Efficacy of HEN in older adults requires specialized caregiver training, attention to caregivers' needs, and frequent monitoring from a highly skilled multidisciplinary team including dietitians. ^

A follow-up outcome evaluation of independent living services for foster care youth

This study aimed to evaluate the effectiveness of the Independent Living (IL) program targeting foster youths to prepare them for effective adulthood. The study employed a pre-post, two-group comparative research design. The IL group was composed of 49 young adults who participated in the IL or SIL (subsidized IL) program prior to their emancipation from foster care (mean age, 20.6 years). The comparison was made up of 18 young adults who experienced foster care but never participated in the IL or SIL programs (mean age, 20.2 years). Data were collected via a mailed survey that included the Daniel Memorial Independent Living Assessment (DMILA) and an additional questionnaire developed by the researcher. The study also examined: (1) why youth in foster care do not participate in IL programs, (2) how participating youth evaluate IL services and what recommendations they make to improve services, and (3) the internal consistency of the DMILA. Results suggest that the DMILA assessment has mediocre reliability. IL program participation is associated with better educational, employment, income, housing, early parenting-prevention, transportation, anger control, criminal-prevention, and self-evaluation outcomes. However, IL participation is not associated with better social support, perceived parenting competence, substance abuse-prevention, sexual risk-prevention outcomes, increased knowledge in money management skills, job seeking and job maintenance skills, interpersonal skills, or lower depression. Results also suggest that the outreach activities of the IL program may be flawed. IL participants reported the IL program was doing best in educational preparation, criminal involvement prevention, and money management preparation and least well in parenting preparation, housing preparation, employment preparation, and substance abuse prevention. To improve services, youths recommended primarily that IL counselors develop closer relationships with youths, that IL training better address organizational skills, and that monthly subsidy be raised and SIL eligibility requirements softened. The study's political context and limitations are also discussed and implications are derived regarding prevention, intervention, outreach, mentorship, empowerment, cross-systems collaboration, and future research. ^

From foster care to college: Young adults' perceptions of factors that impacted their academic achievement

Despite increased Federal, state, and local efforts in the United States to improve outcomes among young adults who emancipate from foster care, low educational achievement and attainment continue to characterize this vulnerable subpopulation. Approximately 50% of foster children do not obtain a high school diploma or a general equivalency diploma (GED). Only about 20% of former foster children enroll in college, compared to 60% of youth not in foster care. The purpose of this study was to explore, describe and explain the perceptions of college students who had lived in foster care regarding the external and internal influences that impacted their academic achievement and attainment. Interviews with a purposefully selected sample of 24 Florida college students were conducted; transcripts were coded and analyzed thematically. Findings included that participants experienced a particular set of external and internal influences at school, in foster care settings, and in the community. External influences include interactions with (a) multiple non-relative guardians and case workers, (b) relatives, especially siblings, (c) mentors, (d) teachers and school administrators, and (e) school counselors. Internal influences include the barriers of anger and bad behavior and a newly identified set of internal characteristics, called success strengths by the researcher, that promote academic achievement and college attainment. Implications are as follows: (a) Future theory on academic achievement concerning foster youth should reflect the importance of the affective aspect of school interactions. (b) Policy should mandate awareness training for educators, social workers, and other adults who work with former foster youth to increase professionals' awareness of the barriers, supports and success strengths that impact the academic lives of children and youth in foster care. (c) Adult educators and human resource development professionals should develop and implement appropriate new education and training materials and interventions. Future research may include a similar interview with former foster youth who graduated from college and with foster youth who leave school before graduating. Finally, a study with a nationally representative sample of college enrolled former foster children should be conducted to determine the relative importance of the barriers, supports and success strengths identified in this study.

From Foster Care to College: Perceptions of Young Adults on Their Academic Success

Perceptions of college students, all former foster youth, regarding influences that impacted their academic attainment are described. Themes involve external interactions and internal influences, including a newly identified set of internal characteristics, “success strengths,” that promote college attainment. The Foster Youth Academic Achievement Model is introduced.

Development of an education resource for families and clients navigating through end-of-life care with at-home palliation

Background: Community health nurses (CHNs) play a pivotal role in providing end-of-life care to clients diagnosed with a life-threatening illness. Providing quality end-of-life care is an ethical obligation. Eastern Health’s palliative end-of-life care program (PEOLC) offers nursing care, equipment, services, and support. However, the caregiver’s need for practical information about end-of-life issues is not addressed. Purpose: To develop an educational resource to assist clients and families during end-of-life and to provide a framework for new CHNs in home palliation. Methods: An informal Needs Assessment, a literature review, an environmental scan, and consultations with four CHNs involved with home palliation. Results: An educational resource was developed to address the practical end-of-life issues identified in the literature review and consultations. Conclusion: An improved delivery of care for at-home palliation in the community for clients and families, and a framework for new CHNs.

Home on a care order: who the children are and what the care order is for

Compared to children in other placements, there is much less known about the characteristics and needs of children in the UK who are returned to their birth parents with a care order still in place. That is in spite of evidence to suggest they face more difficulties than young people in other placements. Based on a 2009 census of looked after children in Northern Ireland, just under 10% (n = 193) were found to be living at home under a care order. Case file reviews were conducted for a quarter of these young people (n = 47) to generate descriptive statistics showing a very diverse population. That was followed by semi-structured interviews with members of eight families (ten children and eight birth parent/s), providing transcripts for thematic analysis. Nearly half of the young people whose case files were reviewed had experienced at least one home placement breakdown, but nearly two thirds had a stable last home placement. Care orders appeared to serve two functions: to give legal authority to social services for the monitoring of placements, and to facilitate family access to family support services. Replacing some care orders with supervision orders might better align legal status and actual function.

Care home managers’ knowledge of palliative care: a Northern Irish study

Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

GPs Experience of Caring for Children with Cancer Receiving Palliative Care at Home

Background The study being undertaken builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived by the family as the gatekeeper of care within the community. Aim The study is examining GPs perception of their role in caring for an individual child with cancer receiving palliative care and comparing this with families' perceptions of their GP's roles. Methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM) to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well as the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40–60 GPs will be involved in the QM. Findings Findings detailing GP experiences from the initial study along with the preliminary findings of the semi-structured interviews with parents and GPs will be presented. Papers' contribution The results will identify and clarify GPs perceptions of their roles, and what families perceive their GPs role to be, enabling development of strategies to support GPs roles. It is anticipated that findings will inform the wider field of palliative care generally and the practice of both hospital and community paediatricians.