Occupational therapists' attitudes toward family -centered care

The purpose of this study was to examine pediatric occupational therapists attitudes towards family-centered care. Specific attributes identified by the literature (professional characteristics, educational experiences and organizational culture) were investigated to determine their influence on these attitudes. Study participants were 250 pediatric occupational therapists who were randomly selected from the American Occupational Therapy Association special interest sections. ^ Participants received a mail packet with three instruments to complete and mail back within 2 weeks. The instruments were (a) the Professional Attitude Scale, (b) the Professional Characteristics Questionnaire, and (c) the Family-Centered Program Rating Scale. There was a 50% return rate. Data analysis was conducted in SPSS using descriptive statistics, correlations and regression analysis. ^ The analysis showed that pediatric occupational therapists working in various practice settings demonstrate favorable attitudes toward family-centered care as measured by the Professional Attitude Scale. There was no correlation between professional characteristics and educational experiences to therapists' attitudes. A moderate correlation (r = .368, p < .05) was found between the occupational therapists attitudes and the organizational culture of their workplaces. A factor analysis was conducted on the organizational culture instrument (FamPRS) as this sample was exclusively pediatric occupational therapists and the original sample was interdisciplinary professionals. Two factors were extracted using a principal components extraction and varimax rotation, in addition to examination of the scree plot. These two factors accounted for 50% of the total variance of the scores on the instrument. Factor 1, called empowerment accounted for 45.6% of the variance, and Factor 2, responsiveness accounted for 4.3% of the variance of the entire instrument. Stepwise regression analysis demonstrated that these two factors accounted for 16% of the variance toward attitudes clinicians hold toward family-centered care. These factors support the tenets of family-centered care; empowering parents to be leaders in their child's health care and helping organizations become more responsive to family needs. ^ These study findings suggest that organizational culture has some influence on occupational therapists attitudes toward family-centered care (R 2 = .16). These findings suggest educators should consider families as valuable resources when considering program planning in family-centered care at preservice and workplace settings. ^

Patient-centred care in Maternity Services : a critical appraisal and synthesis of the literature

CDL thanks the School of Health Sciences (HESAV) at the University of Applied Sciences Western Switzerland for their support.

Examining the Influence of the Patient Declaration of Values on Hospital Policies and Practices

The purpose of this study was to explore how a leading Ontario hospital operationalizes their Patient Declaration of Values (PDoV) in policy and in practice. This was a single case study, which took place in a leading patient-centred Ontario hospital. The study included 18 individual interviews with employees and patient experience advisors, as well as, document analysis of strategic planning reports (n=10). Five themes emerged: (1) setting the stage, (2) inspiring change, (3) organizational structures, (4) organizational and environmental barriers, and (5) reflection and improvement. This study has highlighted the role of the PDoV within a leading Ontario hospital. It lends itself to providing a process with core strategies for creating change in an acute health care organization; to embed a culture of patient and family centred care.

Coconstruction des composantes d'un programme d'intervention en soutien à la résilience de familles dont un adolescent est atteint d'un traumatisme craniocérébral

La vie de famille avec un adolescent comporte son lot de défis. Les émotions de l’adolescent qui se présentent parfois comme des montagnes russes peuvent rendre les relations tendues et difficiles au sein de la cellule familiale, voire même au-delà de celle-ci. Par son caractère inattendu, l’avènement d’un traumatisme craniocérébral (TCC) chez l’adolescent vient fragiliser encore davantage la dynamique familiale. En outre, la myriade d’impacts engendrés par le TCC contraint la famille à modifier son projet de vie en s’investissant ensemble pour le reconstruire. La résilience devant une situation de traumatisme ne se manifeste pas de la même façon pour toutes les familles qui y sont confrontées. Certaines d’entre elles réussissent à se transformer positivement, tandis que d’autres n’y parviennent pas ou manifestent plus de difficultés. Il convient alors d’actualiser des approches de soins interdisciplinaires centrées sur la famille qui favoriseraient la reconnaissance des éléments pouvant soutenir son processus de résilience à travers cette épreuve et, enfin, aider à transformer son projet de vie. Avec comme perspective disciplinaire le modèle humaniste des soins infirmiers (Cara, 2012; Cara & Girard, 2013; Girard & Cara, 2011), cette étude qualitative et inductive (LoBiondo-Wood, Haber, Cameron, & Singh, 2009), soutenue par une approche collaborative de recherche (Desgagné, 1997), a permis la coconstruction des composantes d’un programme d’intervention en soutien à la résilience familiale, avec des familles dont un adolescent est atteint d’un TCC modéré ou sévère et des professionnels de la réadaptation. Le modèle de développement et de validation d’interventions complexes (Van Meijel, Gamel, Van Swieten-Duijfjes, & Grypdonck, 2004) a structuré la collecte des données en trois volets. Le premier volet consistait à identifier les composantes du programme d’intervention selon les familles (n=6) et les professionnels de la réadaptation (n=5). La priorisation et la validation des composantes du programme d’intervention, soit respectivement le deuxième et troisième volets, se sont réalisées auprès de ces mêmes familles (n=6 au volet 2 et n=4 au volet 3) et professionnels de la réadaptation (n=5 aux volets 2 et 3). Le processus d’analyse des données (Miles & Huberman, 2003) a repéré cinq thèmes intégrateurs, considérés comme les composantes du programme d’intervention en soutien à la résilience familiale à la suite du TCC modéré ou sévère d’un adolescent. Ce sont : 1) les caractéristiques de la famille et ses influences; 2) les stratégies familiales positives; 3) le soutien familial et social; 4) la prise en charge de l’aspect occupationnel et; 5) l’apport de la communauté et des professionnels de la santé. Les résultats issus de ce processus de coconstruction ont produit une matrice solide, suffisamment flexible pour pouvoir s’adapter aux différents contextes dans lesquels évoluent les familles et les professionnels de la réadaptation. Cette étude offre en outre des avenues intéressantes tant pour les praticiens que pour les gestionnaires et les chercheurs en sciences infirmières et dans d’autres disciplines quant à la mise en place de stratégies concrètes visant à soutenir le processus de résilience des familles dans des situations particulièrement difficiles de leur vie.

La familia del paciente en Unidad de Cuidado Intensivo (UCI)

Introducción: Ingresar a la UCI no es una experiencia exclusiva del paciente; implica e involucra directamente a la familia, en aspectos generadores de estrés, estrategias de afrontamiento, temores, actitudes y expectativas, la participación de la familia en el cuidado y el rol del psicólogo. Objetivo: Revisar de los antecedentes teóricos y empíricos sobre la experiencia de la familia en UCI. Metodología: Se revisaron 62 artículos indexados en bases de datos. Resultados: la UCI es algo desconocido tanto para el paciente como para la familia, por esto este entorno acentúa la aparición de síntomas ansiosos, depresivos y en algunos casos estrés post traumático. La muerte es uno de los principales temores que debe enfrentar la familia. Con el propósito de ajustarse a las demandas de la UCI, los familiares exhiben estrategias de afrontamiento enfocadas principalmente en la comunicación, el soporte espiritual y religioso y la toma de decisiones. El cuidado centrado en la familia permite una mejor comunicación, relación con el paciente y personal médico. El papel del psicólogo es poco explorado en el espacio de la UCI, pero este puede promover estrategias de prevención y de rehabilitación en el paciente y su grupo familiar. Discusión: es importante tener en cuenta que la muerte en UCI es una posibilidad, algunos síntomas como ansiedad, depresión pueden aparecer y mantenerse en el tiempo, centrar el cuidado en la familia permite tomar las decisiones basados en el diagnóstico y pronóstico y promueve expectativas realistas. Conclusiones: temores, expectativas, actitudes, estrategias de afrontamiento, factores generadores de estrés permiten explicar y comprender la experiencia de la familia del paciente en UCI.

Integrating a sense of coherence into the neonatal environment

Background: Family centred care (FCC) is currently a valued philosophy within neonatal care; an approach that places the parents at the heart of all decision-making and engagement in the care of their infant. However, to date, there is a lack of clarity regarding the definition of FCC and limited evidence of FCCs effectiveness in relation to parental, infant or staff outcomes. Discussion: In this paper we present a new perspective to neonatal care based on Aaron Antonovksy's Sense of Coherence (SOC) theory of well-being and positive health. Whilst the SOC was originally conceptualised as a psychological-based construct, the SOCs three underpinning concepts of comprehensibility, manageability and meaningfulness provide a theoretical lens through which to consider and reflect upon meaningful care provision in this particular care environment. By drawing on available FCC research, we consider how the SOC concepts considered from both a parental and professional perspective need to be addressed. The debate offered in this paper is not presented to reduce the importance or significance of FCC within neonatal care, but, rather, how consideration of the SOC offers the basis through which meaningful and effective FCC may be delivered. Practice based implications contextualised within the SOC constructs are also detailed. Summary: Consideration of the SOC constructs from both a parental and professional perspective need to be addressed in FCC provision. Service delivery and care practices need to be comprehensible, meaningful and manageable in order to achieve and promote positive well-being and health for all concerned.

Who owns the child in hospital? A preliminary discussion

Aim. To 'own' a person is considered an infringement of human rights, but we suggest that concepts of ownership influence interactions between parents and staff when a child is admitted to hospital. This paper aims to stimulate debate and contains an explanation of the exploration of the literature for research and discussion of ownership of the child. Method. A wide variety of library indexes, databases and populist media were examined although it was impossible to examine all literature which may have contained references to this topic, and, apart from databases which contained abstracts in English, we could not include literature written in any language other than English, Swedish, and Icelandic. Findings. We found no research that examines how concepts of ownership of a child affects communication between health professionals and parents and, ultimately, the delivery of health care. This paper begins discussion on the issues. Discussion. Historical literature shows that ownership of humans has been a part of many cultures, and parents were once considered to own their children. Ownership of another has legal connotations, for instance in guardianship struggles of children during marriage breakup and in ethical debates over surrogacy and products of assisted conception. Within health care, it becomes a contentious issue in transplantation of body parts, in discourse on autonomy and informed consent, and for religious groups who refuse blood transfusions. In health care, models such as family centred care and partnership in care depend on positive communication between parents and staff. If a hospital staff member feels that he/she owns a child for whom he/she is caring, then conflict between the staff member and the parents over who has the 'best interests of the child' at heart is possible. Conclusion. We encourage debate about concepts of who owns the hospitalized child - the parents or the staff? Should it be argued at all? Is the whole concept of ownership of another, be it adult or child, the ethical antithesis to modern beliefs about human rights? Comment on this issue is invited.

‘They rush you and push you too much … and you can't really get any good response off them’: A qualitative examination of family involvement in care of people with dementia in acute care

Aim: To explore the role and needs of the family carer across different acute care contexts and their level of involvement in the care of their relative with dementia in this setting. Method: A pragmatic, exploratory-descriptive qualitative approach. A convenience sample of 30 family carers across three sites completed semi-structured interviews. Results: Family carers wanted to be involved in the acute care of their family member with dementia. They acknowledged the importance of a central source of information, educated staff, guidelines on roles and processes, and positive communication, as well as respect from staff for the carer’s knowledge of the older person and their needs. They also highlighted the need for medical staff to discuss with them the family member’s treatment and care. Conclusion: There is a need for family-focused interventions to improve communication and involvement of family in the care of family members with dementia in the acute setting.

Family Caregivers and Palliative Care: Current Status and Agenda for the Future

The quality of life of the person confronting the end stages of their life may be severely compromised without the support of family caregivers. Indeed, most people requiring palliative care would not be able to fulfill their preferences, such as care at home, without significant family caregiver input. As a consequence, health services are mandated to support the family alongside the person diagnosed with a life-threatening illness. In short, palliative care is supposed to be family centred. However, the quality and type of support made available to family caregivers has been questioned. The purpose of this review is to outline a succinct and empirically informed account of family caregiving within the context of palliative care and to propose an agenda for the future. The appraisal is underpinned by several systematic reviews, and other seminal publications from the last decade.

Person centred nursing care in radiation oncology : a case study

Purpose The aim of this case study is to describe clinical staff perceptions of implementing a person-centred model of nursing in an outpatient radiotherapy treatment department, using a Primary Nursing/Collaborative Practice framework. The questions are: 1) what are the nursing and radiotherapy staff perspectives of the changed model of care, 2) what factors impacted on aspects of the evolving model?, and 3) how was interdisciplinary collaboration influenced by the new model? Methods An instrumental case study addressed the multiple perspectives of several radiotherapy health professionals, within a qualitative approach, to assess the new model of nursing care. Interview data were obtained from thirteen clinical staff over a six month period approximately one year after the model was implemented. Results The new model supports nurses to work more closely with the individual patient, with some perceived positive patient outcomes. Nurses reported increased satisfaction with their work, more autonomy and responsibility, and improved working relationships with medical staff. They also became more aware of the holistic approach to support positive patient outcomes. However, this study acknowledged that education was required for nurses to provide holistic care, especially in the context of complex interdisciplinary relationships. Conclusions A person-centred nursing approach in radiotherapy represents a radical change to the functional approach, providing some benefits for patients. However, the challenges of providing holistic care in the context of complex interdisciplinary relationships are evident, and this study acknowledges the importance of a team approach to addressing changes in practice in the future.

Circles of care : should community development redefine the practice of palliative care?

Specialist palliative care, within hospices in particular, has historically led and set the standard for caring for patients at end of life. The focus of this care has been mostly for patients with cancer. More recently, health and social care services have been developing equality of care for all patients approaching end of life. This has mostly been done in the context of a service delivery approach to care whereby services have become increasingly expert in identifying health and social care need and meeting this need with professional services. This model of patient centred care, with the impeccable assessment and treatment of physical, social, psychological and spiritual need, predominantly worked very well for the latter part of the 20th century. Over the last 13 years, however, there have been several international examples of community development approaches to end of life care. The patient centred model of care has limitations when there is a fundamental lack of integrated community policy, development and resourcing. Within this article, we propose a model of care which identifies a person with an illness at the centre of a network which includes inner and outer networks, communities and service delivery organisations. All of these are underpinned by policy development, supporting the overall structure. Adoption of this model would allow individuals, communities, service delivery organisations and policy makers to work together to provide end of life care that enhances value and meaning for people at end of life, both patients and communities alike.

Patients' outcomes related to person-centred nursing care in radiation oncology: A case study

Abstract Purpose The aim of this case study is to describe patients' responses to nursing care following the implementation of a person-centred model in a radiation oncology department. Method An instrumental case study design utilised surveys to collect data on a range of key patient outcomes: patient satisfaction (PSS), informational issues (RSEP), quality of life (FACT_G), comfort (RTCQ), and emotional status (HADS). This occurred at the beginning of, and twelve months following, the implementation of the new model of care. Results This study demonstrated that, although adverse effects of radiotherapy continue to affect patient well-being in the latter part of their course of radiation therapy, patients continue to be satisfied with nursing care. There were significant differences between groups in perceptions of the care environment and the use of the nurse as an acknowledged source of information are noteworthy, since these variables were key targets of the new model of care. The finding that nurses were seen by the post-implementation cohort as more likely to be a source of information is an important indicator that the nurses' presence was noted by patients, and they generally reported high levels of functioning despite undergoing a curative course of radiotherapy. Conclusion The person-centred nursing approach in the radiotherapy setting has contributed to some improvements in the provision of patient care. Aspects of this study may assist in planning further nursing interventions for patients undergoing radiotherapy for cancer, and continue to enhance the contribution of the radiation oncology nurse to improved patient outcomes.