Use of the measure of process of care for families (MPOC-56) and service providers (MPOC-SP) to evaluate family-centred services in a paediatric disability setting

BACKGROUND: The value of family-centred principles in paediatric professional caregiving services is widely acknowledged. However, the degree to which such services adhere to these principles is not well documented. AIM: To examine the perceptions of both families and service providers of the extent to which family-centred services were being implemented by a paediatric disability service provider and to pinpoint areas for improvement. METHOD: A sample of 158 families receiving services from the Cerebral Palsy Association of Western Australia completed the Measure of Processes of Care for families (MPOC-56) and 43 clinicians (most of them physiotherapists, speech pathologists and occupational therapists) completed the Measure of Processes of Care for service providers (MPOC-SP). RESULTS: As in previous studies, the families rated 'respectful and supportive care' highest and 'providing general information' lowest. Clinicians rated 'showing interpersonal sensitivity' highest and 'providing general information' lowest. Analysis of individual items revealed that the following areas of family-centred services were in need of improvement: provision of general written information to families on a range of issues, continuity of care, greater involvement of the family in therapy and provision of more detailed information about therapy issues and provision of more general support to whole families. CONCLUSIONS: The MPOC tools have been found useful in enabling disability service providers to identify areas for improvement and move towards providing services that are more family centred.     

Familienhebammen

Early intervention appears to be effective in terms of primary prevention for infants born to vulnerable families. Family midwives increasingly provide support for these families during the first year of life. The study investigates acceptance, availability, cooperation among providers and satisfaction of the clients. Health promotion for mothers and their infants is the overall goal of the program. Within a design of qualitative interviews and/or standardized questionnaires a sample of 67 families, 11 family midwives, 9 providers in other professions, 50 counseling services and 7 hospitals were involved. The results show that both acceptance and availability of family midwives ranked high within the views of service users. Health promotion, with a focus on the health of babies, was named as special trait of the support given by family midwives, associated with psychosocial support. A wide range of maternal needs and different forms of support received by the mothers was reported. Case control studies should follow.     

Occupational therapy and early intervention: a family-centred approach

The purpose of this study was to identify factors that encourage or inhibit family-centred practice in the occupational therapy intervention process. A qualitative paradigm using grounded theory methodology was utilized to gather and analyse data. Participants included six families and four occupational therapists. Data analysis from the family interviews identified six categories: education, communication, relationship, parental roles, follow through, and scheduling. With further analysis two central themes of time and support were extracted from these categories. Analysis of the occupational therapists' interviews revealed six categories: education, communication, relationship, sibling/family participation, follow through, and empowerment. The central themes emerging from these categories are time and natural routine. The themes obtained from the families and occupational therapists were then compared and family individuality was identified as the core concept. Viewing families as a unique entity is necessary to assist occupational therapists in providing the most effective family-centred occupational therapy.     

Towards family-centred practice in paediatric occupational therapy: A review of the literature on parent–therapist collaboration

The importance of parent involvement in intervention with children has always been recognised by occupational therapists. Current trends in paediatric service delivery have been towards family-centred care, with a central component of this approach being parent–therapist collaboration in planning and evaluating intervention. This paper reviews issues and provides suggestions for clinical practice from the literature on parent–therapist collaboration, including consideration of parents' diversity and unique perspectives, development of effective parent–therapist relationships, establishment of shared goals and priorities when planning intervention, and development of services that support parent–therapist collaboration. Further research is needed in Australian settings to explore the nature of parent–therapist partnerships, the impact of parent participation throughout the intervention process and the extent to which collaboration with parents results in better therapy outcomes for the child and their family.     

‘That would have been beneficial’: LGBTQ education for home‐care service providers

This paper reports qualitative findings from a pilot study that explored the lesbian, gay, bisexual, transgender and queer (LGBTQ) education needs of home‐care service providers working in one large, urban Canadian city. The pilot study builds upon research that has documented barriers to health services for diversely situated LGBTQ people, which function to limit access to good‐quality healthcare. LGBTQ activists, organisations and allies have underscored the need for health provider education related to the unique health and service experiences of sexual and gender minority communities. However, the home‐care sector is generally overlooked in this important body of research literature. We used purposeful convenience sampling to conduct four focus groups and two individual interviews with a total of 15 professionally diverse home‐care service providers. Data collection was carried out from January 2011 to July 2012 and data were analysed using grounded theory methods towards the identification of the overarching theme, ‘provider education’ and it had two sub‐themes: (i) experiences of LGBTQ education; and (ii) recommendations for LGBTQ education. The study findings raise important questions about limited and uneven access to adequate LGBTQ education for home‐care service providers, suggest important policy implications for the education and health sectors, and point to the need for anti‐oppression principles in the development of education initiatives.     

‘I'm allowed to experiment’: the role of people with psychiatric disorders in facilitating students' learning

Fieldwork education brings students into close contact with the people who use occupational therapy services and is an important avenue for socializing students into professionally accepted views of, and behaviours towards, these people. Drawing on narrative data from a naturalistic study of nine Australian occupational therapy students' fieldwork experiences in psychiatric hospital settings, this paper explores the role of people with psychiatric disorders in facilitating students' learning. Two terms are used by the authors to represent students' understanding of these people for educational purposes, namely, as learning resources and as demonstration models. From students' narratives, examples of the attributes they sought to acquire and demonstrate through involvement with people with psychiatric disorders are discussed. There are indications from these data that students' educational needs may foster a view of people with psychiatric disorders as objects in the service of students' learning. Copyright © 1998 Whurr Publishers Ltd.     

Factors affecting family-centred service delivery for children with disabilities

BACKGROUND: The provision of family-centred services (FCS) emphasizes a partnership between parents and service providers so that families are involved in every aspect of services for their child. There is evidence that providing FCS is associated with improvements in parents' satisfaction with services, decreased parental stress, and positive child outcomes. METHODS: The purpose of this study was to examine factors that are most important in determining parent perceptions of the family centredness of care and parent satisfaction with service. A cross-sectional survey was completed by 494 parents, 324 service providers, and 15 CEOs from 16 organizations delivering children's rehabilitation services. Analyses were completed using a structural equation modelling approach. RESULTS: Survey return rates ranged from 77 to 94%. Findings indicate that the principal determinants of parent satisfaction with services are the family-centred culture at the organization and parent perceptions of FCS. Parent satisfaction with services was also influenced by the number of places where services were received and the number of health and development problems experienced by their child. CONCLUSION: Parent satisfaction with services is strongly influenced by the perception that services are more family centred, fewer places where services were received and fewer health and development problems for their child. Ways in which organizations can improve satisfaction through carrying out family-centred behaviours are discussed.     

Diverging perspectives on children’s rehabilitation services: a mixed-methods study

Background: Family-centred ideology is increasingly regarded as a conceptual foundation in services to children with disabilities.

Objective: First, to examine the extent to which parents and therapists perceive the service as family-centred; second, to explore factors affecting parents’ perceptions of the service; and third, to explore how parents understood service aspects typically characterising family-centred services (FCS), such as the goal-setting process.

Material and methods: Parents of 236 children and 25 therapists completed questionnaires (MPOC-32; MPOC-SP). Five parents shared their experiences in an open interview.

Results: On average parents and professionals consider the service to be family-centred from a ‘fairly great’ extent (Respectful and Supportive Care/Treating People Respectfully) to a ‘small’ extent (Providing General Information). Parents’ experiences were influenced by their child’s age, functional performance, and type of disability. Analysis of interview data revealed three categories: Experiencing trust and respect, Collaborating or just following instructions?, and Balancing therapy with daily activities.

Conclusion: Parents praise interpersonal relations but lack of information limits their possibilities to make informed choices about services. In order to translate better into the daily life of the family the intervention should focus more on their activities, routines and participation within the communities they live in.     

“I’m Sure She Chose Me!” Accuracy of Children’s Reports of Mothers’ Favoritism in Later Life Families*

Abstract: We used data from 769 mother‐child dyads nested within 300 later life families to explore the accuracy of adult children’s perceptions of mothers’ patterns of favoritism in terms of closeness and confiding. Adult children were generally accurate regarding whether their mothers preferred a specific child, but often had difficulty identifying whom mothers favored. Multivariate analyses indicated that overall accuracy of children’s reports was positively related to similarity of religious participation and negatively related to parental status of the adult child and family size. Because parental favoritism may affect adult children psychologically and have implications for later life care for parents, family practitioners should be aware of mothers’ patterns of favoritism and the sometimes inaccurate perceptions adult children have concerning this favoritism.     

The transition experience to pre‐school for six families with children with disabilities

The purpose of this qualitative study was to gain an understanding of how families receiving related therapy services experience the transition from early intervention to pre‐school special education. Participants were six families with a child who received early intervention services and became eligible for pre‐school special education services. Data was collected using in‐depth interviews over 3 months. Grounded theory lead to theoretical insights and supported the development of three themes and a metatheme. ‘Transition is scary’, describes the families' feelings about the transition itself and their own perspectives of how their families fared. ‘Therapy is central to progress, but not to transition’, reflects how therapy remained central to their children's progress, but did not help families acclimate to the pre‐school environment. ‘Communication is key to comfort’, expresses the importance of communication with all relevant parties. The metatheme ‘The Outsiders’ describes how the transition represents a significant status change for the family in terms of their involvement in their children's education, but also highlights the ways in which families continue to meet the needs of their children outside of the pre‐school milieu. Findings suggest that families perceive the transition as difficult despite the presence of policies designed to make it easier for them. A deeper examination of policy and its influence on everyday practice related to the transition must occur to help reconcile the reasons for this difference. Copyright © 2010 John Wiley & Sons, Ltd.     

Parents' voices: ‘why and how we advocate’. A meta‐synthesis of parents' experiences of advocating for their child with autism spectrum disorder

Parenting a child with autism spectrum disorder (ASD) can be stressful, and accessing services can add to this stress. Self‐efficacy, agency and advocacy are important for parents when accessing and using services. To develop insight into parental advocacy, a meta‐synthesis was undertaken to consolidate the literature focussing on parents' experiences of advocating for their child with ASD. A qualitative meta‐synthesis was conducted. Fifteen databases were systematically searched by using key terms related to ASD, children, parents/carers, advocacy and qualitative studies. Twenty‐four studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesized into themes through the steps of review, meta‐aggregation, integration and interpretation. Two overarching concepts emerged, illustrating both the challenging nature of advocacy and the associated personal and societal benefits. These two concepts are supported by eight themes: a life‐long, all‐encompassing challenge; advocacy as a parental coping strategy; advocacy involving working to create a future; balancing roles and needs; isolation versus support; personal impacts of advocacy; benefits of advocacy; and the barriers to advocacy. The experience of advocacy for parents with a child with ASD is complex and intensive, presenting both personal and societal benefits, as well as challenges for parents. In supporting individuals with ASD and family well‐being, service providers need to have an understanding of the advocating role of parents and ensure that opportunities exist for their voices to be heard during service delivery.     

Parents' and service providers' perceptions of family-centred practice in a community-based, paediatric disability service in Australia

BACKGROUND: For children who have physical disabilities and their families, involvement with a variety of providers of rehabilitation services is the norm rather than the exception. Despite family-centred practice (FCP) being recognized as the 'best practice' model, families experience models of service provision that range from 'expert' to 'collaborative'. After adopting FCP at Novita Children's Services in South Australia, it was imperative to determine the effectiveness of the implementation of FCP. Aim To investigate parents' and staff's perceptions of FCP at Novita as part of ongoing quality assurance activity, and to identify any gaps in the services provided. METHODS: The Measures of Processes of Care (MPOC) for parents/caregivers and service providers were utilized. A total of 189 families stratified by the three age groups of clients (<6, 6-12 and 13-18 years) and home location (metropolitan and rural) completed the MPOC-20 questionnaire. A total of 145 staff, allied health therapists, rehabilitation engineers, managers and other staff who have direct contact with clients and their families completed the MPOC - service providers (MPOC-SP) questionnaire. RESULTS: Parents generally rated the family-centred behaviours of staff as positive. Respectful and supportive care received the highest rating, while providing general information received the lowest. There were significant differences in scores for all five scales of the MPOC between metropolitan and rural families and the age of the child. Service providers also generally rated their family-centred behaviours as positive. There were significant differences among the professions in areas of showing interpersonal sensitivity and providing general information. CONCLUSIONS: The findings suggest that parents and service providers perceive FCP as positive at Novita, with some areas for improvement. The MPOC-20 and MPOC-SP can be used to measure FCP and to identify service delivery gaps, which warrant further exploration.     

What New Mothers Need to Know: Perspectives from Women and Providers in Georgia

Identifying the educational and resource needs of new mothers is of paramount importance in developing programs to improve maternal and child health outcomes. The primary purpose of this study was to explore the educational needs of new mothers and identify opportunities to enhance healthcare providers’ current educational efforts. A two-part methodology was utilized to qualitatively explore the topic of parenting information needs for new mothers in Georgia. Data collection included information from 11 focus groups with 92 first-time, new mothers and 20 interviews with healthcare providers who serve new mothers. Discussions with both new mothers and providers clearly indicated that new mothers face a significant informational deficit, especially regarding very basic, daily infant care information and health literacy challenges. Educational materials already exist; however, mothers report difficulty accessing and understanding this information. For this reason, both the mothers and the providers stressed a focus on developing programs or interventions that allow in-person education and/or alternative modalities to access information, as opposed to development of new written materials solely. Information from the focus group and interviews provided important insight regarding what improvements need to be made to help new mothers and their families during the early stages of parenthood. By improving the education of new mothers and their families, it is proposed that maternal and infant health status could be improved.     

Profiles of family needs of children and youth with cerebral palsy

Background To identify profiles of family needs of families of children and youth with cerebral palsy (CP), and determine whether profile membership is related to child, family and service characteristics. Methods Participants were mostly mothers (80%) of 579 children and youth with CP. A family member completed modified version of the Family Needs Survey and questionnaires about their child, family and services. Research assistants determined the Gross Motor Function Classification System levels. K-means cluster analysis identified profiles of needs. Cluster membership was analysed to examine differences in clusters based on selected characteristics. Results Four profiles of needs were identified: Low needs, Needs related to community and financial resources, Needs related to child health condition and High needs. Profile membership was differentiated based on child/youth gross motor function, adaptive behaviour, family relationships, family income, access and effort to co-ordinate services. Conclusion Despite heterogeneity among individuals with CP and their families, four profiles of family needs were identified. In total, 51% of families had low needs suggesting that they are effectively managing their children's health conditions while 11% of families had high needs that may require high levels of services and supports. Service providers are encouraged to partner with families, provide anticipatory guidance and co-ordinate services.     

Six month follow‐up: the crucial test of multidisciplinary developmental assessment

Participation of parents in the developmental assessment process is thought to be beneficial in promoting understanding of their child's disability, and improving consensus between parents and professionals about appropriate intervention programmes. If costly multidisciplinary assessments are to be justified, it is necessary to establish long-term benefits for the child. This highlights a need for research identifying how families use services after diagnostic assessment and what they understand to be important for their child. Poor parent–professional agreement about diagnosis may be a factor contributing to low compliance with recommendations. The major purpose of the current study was to follow-up families 6 months after developmental assessment, in order to investigate use of recommended intervention services. In addition, mothers’ opinions about diagnostic findings, recommendations and early intervention services were examined. Subjects were 40 pre-school children who presented for developmental assessment, and their mothers. The majority were diagnosed with developmental problems in multiple domains. Results indicated that most mothers recalled and agreed with their child's diagnosis, but underestimated the severity of developmental delay. Families had not accessed the range of multidisciplinary intervention programmes recommended, given the complexity of their children's disabilities. Speech therapy was considered the service of highest priority by mothers, and was the treatment most frequently received. Mothers recognized a need for more therapeutic interventions for their child. An unexpected finding was the high prevalence of families who organized nonprescribed therapies. Possible explanations of the findings and implications for service delivery are discussed.     

Family Advocates’ Perspectives on the Early Academic Success of Children Born to Low‐Income Adolescent Mothers*

Qualitative analyses were conducted to examine family factors related to individual differences in the early school success of children born to low‐income adolescent mothers from the perspective of paraprofessional family advocates. These families were participants in a 5‐year family support program. Achievement test scores and teacher ratings were used to identify the most successful and least successful students in first grade. Interviews with the advocates about the life experiences of children in each of these groups revealed differences between them in the areas of caregiving practices, maternal characteristics, child characteristics, and contextual sources of stress and support. Given that family service providers are rarely used as informants in this way, the possible strengths and limitations of this approach are discussed.     

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.     

The impetus for family-centred early childhood intervention

In this article, the current climate of early intervention is considered, advocating the necessity for it to remain a cutting-edge service that attends to the changing needs profiles of children and their families. The article reviews the difficulties experienced by families in the UK, where, as the government acknowledges, life chances are still unequal. It emphasises that early interventions can increase the likelihood of the family being able to engage or re-engage with mainstream societal services, thus reducing the long-term costs to society. It discusses the past and present UK policy context from 2004, when Sohns reported that the UK was the only country without a national policy of infrastructure in relation to early childhood intervention, until the present when, a raft of legislation is in place acknowledging its importance and the need for priority. Central to many effective early intervention programmes is the goal of establishing shared communication in the infant-key carer dyad, using alternative communication and therapy-based interventions. The article discusses parent-inclusive programmes which meet the needs of both parents and children, and receive endorsement from parents. Finally, the article considers evaluation of early childhood services, and the necessity of increasing the centrality of the family in service delivery in order to provide services which are integrated, relevant and efficacious.     

Understanding where we come from: Occupational therapy with urban Indigenous Australians

Background:  This article outlines issues of service provision for Indigenous families in Brisbane, Australia. It presents guidelines for the development of a socially and culturally appropriate occupational therapy service for urban Indigenous children.
Methods:  A mixed methodology was used in two independent components of the research. Part 1 comprised a survey of paediatric occupational therapists in Brisbane. Part 2 consisted of focus groups and interviews with recipients of a newly established occupational therapy service for Indigenous children.
Results:  Survey findings indicated that very few Indigenous families access mainstream occupational therapy services. Issues and strategies for developing culturally appropriate practice emerged around five main themes. These were the need to develop effective relationships, develop particular personal qualities, understand the background of both the client and the therapist, both gain and give knowledge, and address logistical issues of service delivery.
Conclusions:  Service providers need to understand the social and cultural context of both their Indigenous clients and themselves. Recommendations for future education and practice are provided.