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.     

Evaluation of the processes of family‐centred care for young children with intellectual disability in Western Australia

Introduction Government early intervention services for children with intellectual disability (ID) in Western Australia have adopted the model of family‐centred care. The aim of this study was to evaluate how well it was being practised, to describe the pattern of service utilization and to identify factors influencing parental perceptions of family‐centred care. Methods The study included children aged 0–6 years with ID, who were registered clients of Disability Services Commission, Western Australia. Parents completed a postal survey questionnaire about the frequency and type of services received and their perceptions of services using the Measure of Processes of Care (MPOC‐56) questionnaire. Mean scores for the five MPOC domains were compared using anova against the independent variables of child age group, child diagnostic group, service type and frequency, place of residence, family and demographic variables. Significant variables in each domain were then entered into multivariate analyses. Results Of 292 eligible families, 165 (59%) returned a completed questionnaire. While over 50% of children had contact with occupational, speech and physical therapists at least once per month, less than 20% of children had at least annual contact with either psychology or dental services. Families rated their satisfaction highest for ‘respectful and supportive care’ and lowest for ‘providing general information’. Individual item analyses indicated less satisfaction with ‘co‐ordinated and comprehensive care’. Higher means were associated with more frequent contact with occupational therapy. Conclusion Overall respondents reported early intervention services for young children with ID in Western Australia provided satisfactory family‐centred care by means of the 56‐item MPOC. The frequency of contact with allied health professionals was positively associated with parental ratings of family‐centred care. The study indicates under‐servicing in dental care and psychology services.     

Is the Give Youth a Voice questionnaire an appropriate measure of teen‐centred care in paediatric oncology: a Rasch measurement theory analysis

Background

Adolescents have their own views about the cancer care they receive and how they feel they are treated, but their opinions are rarely solicited.

Objective

To determine whether the 56‐item Give Youth a Voice (GYV‐56), its subscales and its 20‐item short‐form, are clinically meaningful and psychometrically sound instruments that can be used to measure teen‐centred care (TCC) in paediatric oncology.

Design

Qualitative interviews and a questionnaire survey.

Setting and participants

Qualitative interviews with 38 childhood cancer survivors. GYV‐56 data collected from 200 paediatric cancer patients and survivors.

Main outcome measure

The GYV‐56, which measures the following four aspects of service delivery: Supportive and respectful relationships; Information sharing and communication; Supporting independence; and Teen‐centred services.

Results

Qualitative data provided broad support for the TCC conceptual framework and GYV‐56 items. After post‐hoc reduction of the response options from 7 to 3 (to correct for disordered thresholds), fit to the Rasch model was good, most items showed acceptable fit residuals and chi‐square P‐values, scale reliability were supported and item locations defined a continuum for TCC that was well‐targeted to the sample. By calibrating the items for each subscale and the short‐form to the full scale, the scores obtained on each measure are directly comparable.

Conclusion

Our study found initial support for use of the GYV with a reduced response option format for examining TCC in the adolescent oncology patients. in this paediatric population. Further research using the GYV is needed to elaborate upon our findings.     

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.     

Evaluation of family-centred practices in the early intervention programmes for infants and young children in Singapore with Measure of Processes of Care for Service Providers and Measure of Beliefs about Participation in Family-Centred Service

Background The primary purpose of this study was to report on an evaluation of the perceptions and beliefs of service providers towards family‐centred practices in 11 early intervention programmes for infants and young children in Singapore. Methods The Measure of Processes of Care for Service Providers (MPOC‐SP) and Measure of Beliefs about Participation in Family‐Centred Service (MBP‐FCS) were administered to 213 service providers made up of teachers, therapists, psychologists and social workers providing centre‐based therapy to children with special needs who were below the age of 6 years. Results Exploratory factor analyses were performed with both scales. Nineteen of the 27 MPOC‐SP items were retained and supported the original four‐factor structure model. The exploratory factor analyses on MBP‐FCS provided a less satisfactory outcome. Fourteen of the 28 items were retained and these loaded onto four factors. The two factors relating to Beliefs about benefits of FCS and Beliefs about the absence of negative outcomes from FCS failed to emerge as separate factors. Further multiple regressions indicated that more direct work with families and positive self‐efficacy in implementing FCS contributed significantly to explaining service providers' positive perception towards family‐centred practice in service delivery. Conclusions This is the first time MPOC‐SP and MBP‐FCS were administered to a population in an Asian context. While MBP‐FCS would benefit from further development work on its construct, MPOC‐SP offered important insights into service providers' perspectives about family‐centred practices that would have useful implications for professional and service development.     

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.     

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.     

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.