Parent and service providers' perceptions regarding the delivery of family‐centred paediatric rehabilitation services in a children's hospital

Background Family‐centred service (FCS) provision has long since been acknowledged as the ‘best‐practice’ model within paediatric rehabilitation with numerous reported benefits for both the child and their family. Although family‐centred care continues to be investigated worldwide using the Measure of Processes of Care (MPOC) survey, to date only two published studies have been conducted within an Australian context, neither of which were within a hospital setting. As a large number of Australian children attend hospital clinics to receive rehabilitation services, research that investigates FCS within this type of environment is required. This study investigated parent and service providers' perceptions of FCS provision within a large Australian metropolitan children's teaching hospital using the MPOC survey. Methods A total of 100 parents/caregivers (34% response rate) whose child had accessed hospital paediatric rehabilitation services over a 12‐month period completed the MPOC‐20 survey. Thirty‐two completed MPOC‐SP surveys (80% response rate) were received from the hospital's rehabilitation service providers. Qualitative data were sourced from service providers on their understanding of the term FCS. Results Parents' perceptions of FCS provision were generally positive, rating Respectful and Supportive Care the highest and Providing General Information the lowest. No significant differences were indentified in relation to location of residence, type of disability or number of disabilities per child. Service providers also rated Providing General Information the lowest and felt Treating People Respectfully was strength in the provision of services. Extended responses from service providers indicated that although they possessed a sound understanding of the meaning of FCS, delivering flexible and accessible services and fostering effective communication among all partners were not widely expressed themes. Conclusions These results show consistent strengths and weaknesses in FCS provision to children with disabilities and their families and the need to further address the demand for adequate provision of general information.     

A person‐centred approach to family carer needs assessment and support in dementia community care in Western Australia

This feasibility study aimed to identify and address the support needs of family carers (FCs) of people living with dementia and to assess whether the use of the Carer Support Needs Assessment Tool (CSNAT) intervention in home‐based care was acceptable and relevant to FCs. The CSNAT intervention comprised two FC support needs assessment visits, 7 weeks apart, plus associated actions addressing prioritised needs by the Client Care Advisors of a community care service in Western Australia in 2015. Telephone interviews were conducted with FCs on their experience using the CSNAT at the end of the intervention. Twenty‐one FCs were involved in the intervention and 15 of them completed the feedback interviews. Care recipients had moderate to severe dementia. The top five support needs reported by FCs were: having time to yourself in the day; knowing what to expect in the future; practical help in the home; looking after your own health and dealing with your feelings and worries. Three themes summarised their experience: a straightforward structured approach; awareness, acknowledgement and acceptance of their situation; and provision of support. FCs appreciated the opportunity to be heard and acknowledged, to have their practical and psychosocial support needs facilitated, to identify what is important to them and to receive a response in a timely manner. The CSNAT approach offered a structured carer‐led, person‐centred, supportive intervention that facilitated discussion between the family carer and the service provider about support needs and strategies to address them.     

Person‐centred care dialectics—Inquired in the context of palliative care

Although a widely used concept in health care, person‐centred care remains somewhat ambiguous. In the field of palliative care, person‐centred care is considered a historically distinct ideal and yet there continues to be a dearth of conceptual clarity. Person‐centred care is also challenged by the pull of standardization that characterizes much of health service delivery. The conceptual ambiguity becomes especially problematic in contemporary pluralistic societies, particularly in the light of continued inequities in healthcare access and disparities in health outcomes. Our aim was to explicate premises and underlying assumptions regarding person‐centred care in the context of palliative care with an attempt to bridge the apparently competing agendas of individualization versus standardization, and individuals versus populations. By positioning person‐centredness in relation to the hermeneutics of the self according to Paul Ric?ur, dialectics between individualization and standardization, and between individuals and populations were constructed. The competing agendas were related in a dialectic manner in the way that population health is of importance for the individual, and standardization is of importance for the population. The analysis suggests that person‐centred care is an ethical stance, which gives prominence to both suffering and capability of the individual as a person. The dialectic analysis points towards the importance of extending person‐centred care to encompass population and societal perspectives and thereby avoiding a problematic tendency of affiliating person‐centred care with exclusively individualistic perspectives. Considerations for person‐centred palliative care on micro‐, meso‐ and macrolevels conclude the paper.     

Measurement of family‐centred care: translation,adaptation and validation of the Measure of Processes of Care (MPOC‐56 and ‐20) for use in Japan

Background The Measure of Processes of Care (MPOC) that was developed in Canada is a widely used quantitative measure of parents' perceptions of the extent to which family‐centred care is conducted. The purpose of this study was to assess the validity and reliability of the Japanese version of the MPOC. Methods The translation of the MPOC was performed according to international standards for translation of questionnaires. The Canadian validation procedures were followed, consisting of concurrent validity, construct validity and test–retest reliability. The Japanese version of the MPOC was completed by 261 families with children receiving rehabilitation services. Results The Japanese version of the MPOC showed adequate internal consistency with Cronbach's alpha, varying between 0.76 and 0.94. The construct validity was examined with confirmative analysis of each scale structure. Correlations between the MPOC scale scores and satisfaction questions scores were positive, and that to a question about parents' stress was negative. For test–retest reliability, the intraclass correlation coefficients were between 0.76 and 0.89. Conclusions The Japanese version of the MPOC has good psychometric properties and can be recommended for evaluation of the processes of child rehabilitation in Japan.     

Patient‐centred care training needs of health care assistants who provide care for people with dementia

It is well documented that Health care assistants (HCAs) provide the most hands‐on care to residents in aged care facilities, and play a critical role in the provision of care to dementia residents. Over the last 25 years, a philosophy of person‐centred care has become the preferred approach to care and this has meant that HCAs are encouraged to get to know the resident very well. This paper reports the experiences of HCAs in caring for people at end‐of‐life, identifies the skills required for their work and examines the education provided against these skills. Semi‐structured interviews were conducted in 49 facilities (n = 34) across New Zealand and data analysed thematically, with the aim of critically examining the adequacy of education for health care assistants which meets their needs within a person‐centred environment. The results confirm that the skills include traditional tasks of care (showering, feeding, toileting, and dressing) but the increasingly important communication and de‐escalation skills, both verbal and non‐verbal, have become central to their care skills. Education provided has not sufficiently shifted focus to include these more complex skills. Provision of educations that acknowledges the increased complexities of their role needs to be provided. As well, facilities need to be challenged to reconsider the HCA's position in the facility care tem.     

Reconciling concepts of time and person‐centred care of the older person with cognitive impairment in the acute care setting

The aim of this analysis was to examine the concept of time to rejuvenate and extend existing narratives of time within the nursing literature. In particular, we hope to promote a new trajectory in nursing research and practice which focuses on time and person‐centred care, specifically of older people with cognitive impairment hospitalized in the acute care setting. We consider the explanatory power of concepts such as clock time, process time, fast care, slow care and time debt for elucidating the relationship between ‘good care’ and ‘time use’. We conclude by offering two additional concepts of time, plurotemporality and person‐centred time (PCT) which we propose will help advance of nursing knowledge and practice. Nurse clinicians and researchers can use these alternative concepts of time to explore and describe different temporal structures that honour the patient's values and preferences using experiential, observation‐based nursing research approaches.     

Reflecting on the efficacy of cognitive mapping for decision‐making in intellectual disability care: a case study

The central aspect of this study is a set of reflections on the efficacy of soft operational research techniques in understanding the dynamics of a complex system such as intellectual disability (ID) care providers. Organizations providing services to ID patients are complex and have many interacting stakeholders with often different and competing interests. Understanding the causes for failures in complex systems is crucial for appreciating the multiple perspectives of the key stakeholders of the system. Knowing the factors that adversely affect delivery of a patient‐centred care by ID provider organizations offers the potential for identifying more effective resource‐allocation solutions. The authors suggest cognitive mapping as a starting point for system dynamics modelling of optimal resource‐allocation projects in ID care. The application of the method is illustrated via a case study in one of the ID care providers in the Netherlands. The paper discusses some of the practical implications of applying problem‐structuring methods that support gathering feedback from vulnerable service users and front‐line workers. The authors concluded that cognitive mapping technique can assist the management of healthcare organizations in strategic decision‐making. Copyright © 2013 John Wiley & Sons, Ltd.     

Family‐centred care: a qualitative study of Chinese and South Asian immigrant parents' experiences of care in paediatric oncology

Background Over the past two decades, there is increasing emphasis being placed upon providing family‐centred care (FCC) in paediatric oncology settings. However, there is a lack of knowledge of FCC in paediatric oncology from the perspectives of immigrant parents. The purpose of this paper is to describe Chinese and South Asian immigrant parents' experiences of FCC in paediatric oncology settings in Canada. Methods This study adopted a constructivist grounded theory approach. Fifty first generation Chinese and South Asian parents of children with cancer who were at least 6 months post‐diagnosis were recruited from six Canadian paediatric oncology centres. Interviews were conducted in English, Cantonese, Mandarin, Urdu, Punjabi or Hindi, and transcribed into English. Analysis involved line‐by‐line, focused and theoretical coding, and the use of the constant comparison method. Results Findings indicated that overall parents were highly satisfied with the care and services they received, and their experiences were reflective of the key elements of FCC. However, there were some areas of concern identified by participants: parents not perceiving themselves as a member of the medical team; inconsistency in the quality and co‐ordination of services among healthcare providers; disrespectful and mechanical manner of a few healthcare providers; and parents' discomfort with healthcare providers communicating sensitive health‐related information directly with their child. Conclusions In order to successfully provide family‐centred services to immigrant parents of children with cancer, better communication of the elements of FCC between healthcare staff and families is needed to negotiate a clear role for the parents as partners of the healthcare team. Moreover, a better understanding of how family relationships are structured in immigrant families will assist healthcare providers to balance the best interests of the child with that of the family as a unit.