A partnership approach to service needs assessment with family caregivers of an aging relative living at home: A qualitative analysis of the experiences of caregivers and practitioners

Background

As the global population ages, support for family caregivers who provide the bulk of care to community-dwelling older people is becoming ever more important. However, in many countries, homecare-service practitioners currently do not follow a systematic approach to assessing and responding to caregiver needs.

Objectives

The aim of this study was to explore the experiences of caregivers and practitioners who took part in a field test of the Family Caregivers Support Agreement (FCSA) tool, a modified version of the Carers Outcome Agreement Tool (COAT) initially developed as the result of an Anglo-Swedish study. Both the COAT and the FCSA are designed to facilitate partnerships between caregivers and practitioners so that needs assessment and subsequent support services are negotiated and agreed so as to meet caregiver expectations.

Design and participants

A qualitative design was adopted and data were collected through focus groups with six practitioners (nurses and social workers) working in two Local Community Service Centres in the province of Quebec (Canada). These practitioners had previously completed the FCSA tool with 17 primary caregivers of frail elderly relatives who were clients of homecare services. Individual interviews were conducted with the caregivers to explore their experiences. Data were analyzed to identify significant themes, from the perspectives of caregivers and practitioners, which provided insights into their experiences and the strategies used by practitioners to facilitate partnership working.

Findings

To facilitate meaningful exchanges, practitioners adopted strategies such as sensitive listening and the use of enabling questions to identify and contextualize caregiver needs and to highlight the ability of caregivers to find their own creative solutions to the challenges they face. The caregivers described experiencing a climate of trust that allowed them to express their concerns, to reflect upon their situation and to participate in the development of an action plan for their support.

Conclusions

The study reaffirms findings from Sweden and UK that the use of a tool such as the FCSA enhances partnership working and creates a caregiver-practitioner relationship based on a genuine alliance. As a result, both parties gain new insights into the caring situation. The approach underpinning the FCSA tool has potential for a more widespread application in different contexts.     

Barriers and facilitators to the receipt of palliative care for people with dementia: The views of medical and nursing staff

Background: The global prevalence of dementia is set to rise to almost 65 million people by 2030, providing policy makers and practitioners with significant challenges, not least within the realms of end-of-life care. The international literature would suggest that people with dementia may benefit from palliative forms of care, but evidence indicates that many fail to access such provision at the end of life. The role of the health care team is pivotal if people with dementia are to benefit from the transition to palliative care. Aim: This paper reports on qualitative research conducted in the UK that sought to explore the experiences of health care practitioners working in palliative care and sought to establish the issues relating to end-of-life care for people with dementia. Design: Eight focus groups and four individual interviews were held. Data were analysed using a thematic approach. Setting/participants: The study included palliative care practitioners (n = 58) including medical, nursing and allied health professionals. Participants were recruited from acute hospitals, general practice, hospices and specialist palliative care units in the UK. Results: Four themes were identified: Making the transition; Competence challenged; 'The long view' and Working together. Whilst there exists good practice in this area, the barriers to timely and appropriate transitions to palliative care for people with dementia and their families continue to exist. The paper concludes with recommendations for policy and practice development.     

Needs of older people in the community: issues for PCGs and PCTs

National policy (Department of Health, 1997, 2000) is directing care provision to being appropriate to meet people's needs; to be effective; evidence-based; efficient and economic. Primary care groups (PCGs) and trusts (PCTs) have been identified as being the organizations to deliver such care. Since the introduction of the NHS and Community Care Act 1990, certain issues have been highlighted as having implications for the provision of an 'ideal' service for older people on the community. These issues focus around three main areas: assessment of need; working in partnership and quality of service provision. This article discusses these issues and their implications for PCGs/PCTs in relation to supporting older people in the community.     

Printed Health Information Materials: Evaluation of Readability and Suitability

Interdisciplinary collaboration and coordination of services are receiving new emphasis in Birth to Three Early Intervention programs under Part H of Public Law (PL) 102-119 (Individuals with Disabilities Education Act, formerly PL 99-457, the Education for All Handicapped Children Act). Public Health Nurses (PHNs) have historically provided health promotion services in the home to families of infants and children with special health and developmental needs, whereas other community programs have provided specific developmental and related services. Now, as the number of professional specialties involved with children with special needs increases, overlap also increases. Nursing is frequently questioned as to its unique contribution. The holistic health perspective of nursing, which integrates all aspects of the health and well-being of individuals and families, can provide especially valuable insight to the assessment, planning, and service delivery processes. Nurses need to not only participate in the planning process during the interdisciplinary planning meetings, but also to contribute their own assessment and recommendations from a nursing perspective. Under PL 102-119, the Individual Family Service Plan (IFSP) provides the framework for family-centered planning of services for the infant or young child with special needs. Developed in partnership with the family, this plan identifies strengths, resources, concerns, and priorities based on the family's determination of relevancy (Sokoly &; Dokecki, 1992). IFSP development includes formal and informal assessments by qualified professionals who provide their special expertise as shaped by the family's priorities. The health assessment and services called for within PL 102-119 are consistent with public health nursing's focus on prevention and early intervention. Health issues are basic to the definition of children with special health needs and often must be addressed before developmental goals can be...     

Service Provision for Young People with Intellectual Disabilities and Additional Mental Health Needs: Service‐providers’ Perspectives

Background Very little is known about young people with intellectual disabilities who experience additional mental health problems. The perspective of service providers has been highlighted as one unresearched area. Method Semi‐structured interviews were completed with senior service providers. Aims: (1) to explore experiences of working with young people with intellectual disabilities and additional mental health problems and their families; (2) to examine views on services’ ability to meet the needs of this group. Results Service providers identified a gulf between current policy and the reality for this group, not least in terms of all agencies working in partnership. All agencies described instances when young people in this group fall through gaps between services. Interviewees identified a range of factors that promote good outcomes. Conclusions The results suggest that the focus of current policies to promote joint working needs to be broadened beyond health and social services to ensure much improved links with education providers and the voluntary sector if the needs of this group are to be met.     

The impact of paediatric oncology education on clinical practice – A phenomenological study

PurposeOver the past 40 years, 5-year survival rates for children and young people with cancer have risen dramatically in the United Kingdom (UK), an improvement largely attributable to the increasingly effective treatments and the centralisation of care. Registered nurses in clinical roles, both within the hospital and the community setting, require on-going and relevant education and training programmes to equip them with the necessary professional and personal skills to ensure they are fit for purpose.MethodThis research study reports on Child Health Nurses (CHN's) perceptions of the impact of paediatric oncology education on their practice. Using a phenomenological approach, this study explores this phenomenon in depth, constructing meaning through the individual participants ‘lived experiences’. A purposive sample was selected to participate in semi-structured interviews within their clinical environment.ResultsFindings suggest that formal paediatric oncology nurse education is perceived to positively impact on certain aspects of the practitioners practice. All the CHN's felt empowered through their newly found knowledge, confidence and attitude and ability to apply evidence-based care. All participants perceived a need for education at all levels, most enjoyed the blended approach to the teaching, learning, and assessment, however all experienced great support from one another and the sharing of personal and professional experiences.ConclusionsFrom this study it is acknowledged that paediatric oncology education is required and is important for the delivery of quality care. However, there is a dearth of research-based literature which truly analyses the effectiveness and impact of education on paediatric oncology practice.     

Survived so what? Identifying priorities for research with children and families post‐paediatric intensive care unit

The involvement of patients and the public in the development, implementation and evaluation of health care services and research is recognized to have tangible benefits in relation to effectiveness and credibility. However, despite >96% of children and young people surviving critical illness or injury, there is a paucity of published reports demonstrating their contribution to informing the priorities for aftercare services and outcomes research. We aimed to identify the service and research priorities for Paediatric Intensive Care Unit survivors with children and young people, their families and other stakeholders. We conducted a face‐to‐face, multiple‐stakeholder consultation event, held in the Midlands (UK), to provide opportunities for experiences, views and priorities to be elicited. Data were gathered using write/draw and tell and focus group approaches. An inductive content analytical approach was used to categorize and conceptualize feedback. A total of 26 individuals attended the consultation exercise, including children and young people who were critical care survivors; their siblings; parents and carers; health professionals; academics; commissioners; and service managers. Consultation findings indicated that future services, interventions and research must be holistic and family‐centred. Children and young people advisors reported priorities that focused on longer‐term outcomes, whereas adult advisors identified priorities that mapped against the pathways of care. Specific priorities included developing and testing interventions that address unmet communication and information needs. Furthermore, initiatives to optimize the lives and longer‐term functional and psycho‐social outcomes of Paediatric Intensive Care Unit survivors were identified. This consultation exercise provides further evidence of the value of meaningful patient and public involvement in identifying the priorities for research and services for Paediatric Intensive Care Unit survivors and illuminates differences in proposed priorities between children, young people and adult advisors.     

Looking after children and young people: ensuring their voices are heard in the pre-registration nursing curriculum

'Looked after Children' refers to those under the age of 18 years, who have been subject to a care order under The Children Act (1989). In England there are approximately 64,400 young people who are subject of a care order, with evidence suggesting that these young people are likely to experience greater health problems than their peers. While service user involvement is seen as integral to the nursing curriculum much of the literature to date has revolved around adult service users and carers. For a number of years professionals have been urged to hear the voices of young service users and carers, and in particular, those who regularly use health and social care services. This paper will highlight the importance of collaborating with looked after children and young people to inform the nursing curriculum. By focussing on the experiences of delivering a seminar in collaboration with this group of young people in a pre-registration BSc (Hons) in Children's Nursing, the paper will first describe how the session is organised followed by a discussion of the key issues arising these being explored from a nurse lecturer and student nurse perspective.     

Involving children and young people in clinical research through the forum of a European Young Persons’ Advisory Group: needs and challenges

Children and young people are seen as fundamental to the design and delivery of clinical research as active and reflective participants. In Europe, involvement of children and young people in clinical research is promoted extensively in order to engage young people in research as partners and to give them a voice to raise their own issues or opinions and for their involvement in planning and decision making in addition to learning research skills. Children and young people can be trained in clinical research through participation in young person advisory groups (YPAGs). Members of YPAGs assist other children and young people to learn about clinical research and share their experience and point of view with researchers, thereby possibly influencing all phases of research including the development and prioritization of research questions, design and methods, recruitment plans, and strategies for results dissemination. In the long term, the expansion of YPAGs in Europe will serve as a driving force for refining pediatric clinical research. It will help in a better definition of research projects according to the patients’ needs. Furthermore, direct engagement of children and young people in research will be favorable to both researchers and young people.     

Enabling young 'ventilator-dependent' people to express their views and experiences of their care in hospital

Discussion in this paper is drawn from a phenomenological study carried out in England describing the views and experiences of young 'ventilator-dependent' people aged 6-18 years, regarding their health and social care, education, and aspirations for the future. This study presented many methodological and ethical challenges in order to elicit and present their views in a meaningful way. Data were elicited through focused face-to-face interviews with 18 young people. Innovative methods of data collection were used with younger children and those who had a range of communication impairments. In addition, family members of 15 young people were interviewed. Presentation of findings is limited to views and experiences of the young people's care in hospitals. Findings reveal that a significant number of Articles in the United Nations (UN) Convention on the Rights of the Child were not respected or upheld. Young 'ventilator-dependent' people were discriminated against when trying to access health services because of their need for assisted ventilation. They were particularly excluded from making important decisions about their lives and were not always offered the full protection of the Children Act 1989 (England). Some young people were not able to maintain adequate contact with their families, first language, culture, nationality and religion. Almost all spent prolonged periods of time (in some cases years) in hospital when they no longer wanted or needed to be there. All those interviewed wanted to be discharged home far sooner. The generalizability of findings is unknown; however, important questions are posed in relation to nursing practice and research regarding the overall management of this group of young people. Issues include: respecting and upholding human rights; and challenging the boundaries of current nursing practice in order to move towards child-centred, appropriate and effective models of care.     

Working together to safeguard children: challenges and changes for inter-agency co-ordination in child protection

The publication of Working Together to Safeguard Children (DoH, 1999b) and the new Assessment Framework for Children in Need (DoH, 1999) pose considerable challenges for inter-agency work in the child protection field. This paper explores the core themes and objectives of these two policy frameworks. A number of critical tensions within these policy documents are identified particuarly with regards to the definition of 'children in need' and the quality of inter-agency working outside the child protection system. The paper explores the challenges for the inter-agency community of making the shift to a more needs-led approach. A key theme in managing this change is the inter-relationship of three domains of partnership: partnerships with service users, partnerships between agencies/disciplines, and partnerships within agencies/disciplines. Using an adapted version of Howe's (1992) matrix of partnership, these inter-relationships are examined. It is argued that increasing the levels of co-ordination between agencies will only reap benefits if this is based on intra-agency clarity and commitment to child welfare work. The paper concludes by identifying eight implementation issues for Working Together to Safeguard Children.     

Commitment to partnership: interdisciplinary initiatives in developing expert practice in the care of survivors of violence

The debate surrounding The Human Rights Act (The Human Rights Act 1998. Home Office, London) and its impact on survivors of violence, has coincided with current political emphasis and UK Government policy on promoting partnership in the development and d elivery of statutory and voluntary health and social services (Crime and Disorder Act 1998, Home Office, London, Making a difference. Department of Health, London, 1999a, Modernising health and social services national priorities guidance 2000/01–2002/03 . Department of Health, London, 1999b, MacPherson 1999 The Stephen Lawrence Inquiry. Vol. 1 & 2. The Home Office, London. NHS Executive 1998 The New NHS, modern and dependable: a national framework for assessing performance. Consultation document. NHS Executive, London, 1999. Working Together. Securing a quality work force for the NHS. Department of Health, London). Within this social and political arena, staff at City University, London, UK have developed an Interprofessional MSc – Society Violence and Practice. The focus is on the d elivery of expert practice in caring for survivors of violence of all sorts, e.g. rape, child abuse, domestic and road traffic violence. The curriculum has developed in the international arena and is based on the work of Dr Lee Ann Hoff and colleagues fr om the University of Massachusetts, Lowell, USA.This is a reflective account of the macro and micro group processes which evolved during the establishment of this programme, the first two modules of which have already been offered at BSc Honours level. The enthusiasm and creativity from practitioners and educationalists across disciplines, who supported the development and implementation of this programme, prompted this reflection based on Bion's (1968 Experiences in groups: and other papers. Tavistock, London) theories of effective working groups.The parallel processes evident in practice the human services (Obholzer 1994 The unconscious at work. Individual and organizational stress in the human services. Routledge, London) were also evident the programme's development and implementation. These reflected sound practice, i.e. in the shared interprofessional responsibility when working with survivors of violence, as well as in meeting the needs of a variety of stakeholders. The Course Advisory Board and the Curriculum Management Team at City University, have interprofessional membership and include practitioners and educationalists. Challenges occurred in group processes where boundaries needed to be kept and language needed to be carefully clarified. As this was a new and different programme, School systems did not always match the needs of the course. Changes needed to be negotiated and new systems established.However, despite the challenges, everyone involved worked collaboratively across disciplines, reflecting current British policy emphasising partnership in dealing with the consequences of violent crime (Home Office 1998a) and the Department of Health's (1999a) strategies for care delivery in the National Health Service.     

Exploring multi-agency working in services to disabled children with complex healthcare needs and their families

Children with complex healthcare needs typically require technical and/or medical equipment in the home. This growing group of children and families need support that crosses agency and professional boundaries, necessitating effective multi-agency working. There are many examples of multi-agency working around the United Kingdom (UK), some specifically designed to meet the needs of children with complex healthcare needs and their families. Recent legislation and policy statements have highlighted the importance of joint planning and working. Currently no research exists that examines the impact of these initiatives on disabled children with complex healthcare needs and their families. The "Working Together" project is an ongoing research study based at the Norah Fry Research Centre, University of Bristol, Bristol, UK. The project aims to explore the impact of multi-agency work on children with complex healthcare needs and their families. This paper examines the literature on barriers to disabled children and the need for multi-agency working. It also considers the concept of multi-agency working and how different approaches to working together might be perceived by children and families.     

Carer participation in England, Wales and Northern Ireland: a challenge for interprofessional working

Much policy and practice attention has been focused on the participation and involvement of informal carers in service assessment, provision and review. The advent of the National Carers Strategy, the Community Care Delayed Discharge Act, Carers and Disabled Children Act and latterly the Carers (Equal Opportunities) Act have all played their part in giving greater significance to carer involvement. The role of professional cooperation and willingness to see carers as equal partners is a key factor in achieving these objectives. This paper relates details of a study of current carer participation in England, Wales and Northern Ireland and begs a number of important questions as to the challenges for interprofessional working in supporting carer participation.     

Young people living with parental alcohol misuse and parental violence: ‘No‐one has ever asked me how I feel in any of this’

Young people are adversely affected by negative family experiences, but there is a gap in knowledge when the commonly co‐existing issues of parental alcohol misuse and parental domestic abuse are considered. Research which talks directly to the young people living in such circumstances is therefore needed. As part of a Europe‐wide research study, eight young people aged 12–18 years from five families in England were interviewed about their experiences of living with parental alcohol misuse and violence. Strong links emerged between parental drinking and domestic abuse, with verbal aggression common, and frequent and physical violence less frequent, but of equal concern. The young people had tried and were trying a range of strategies to try and cope with their home environments, and faced an ongoing battle in working out what to do for the best. Support from family, friends, and professionals was discussed, but the young people generally had mixed views about what help they had received and the support that they would have liked. The paper discusses what the findings might mean in terms of the practice and policy response to children living in risky family environments.     

Adoption law: a district nurse's guide

The Government wants to see a large rise in the use of adoption as a means of giving children a secure, loving and permanent home. Guidance coming into effect from April calls for a more pragmatic approach to adoption placements, and calls for the active promotion of the adoption process by health and social care professionals. District nurses will encounter people interested in becoming prospective adopters, but who are unsure if their background or lifestyle makes them eligible. It is essential that district nurses have a working understanding of the guidance and provisions of the Adoption and Children Act 2002 to confidently advise others about adoption and clarify any issues raised.     

Multiprofessional education: improving care for acutely ill children

A three-year programme was established for practitioners who work with acutely ill and injured children and young people. Courses were held in urban and rural areas of Scotland and more than 2,000 NHS staff, including nurses, paramedics, doctors and allied health professionals, took part. Three-day training comprised clinical skills updates, scenario-based teaching and observed structural clinical examinations. As a result, NHS Scotland says care delivery to children, young people and their families has improved in community and hospital environments.     

Nursing care and collaborative practice

This article argues that the time is right for nurses in the UK to become the case managers in all healthcare settings. The re-launch of family health nursing, as a model for the organization and delivery of nursing care in the community, and the advent of the GP practice-based self-managed integrated nursing teams, offer the means by which to take up the opportunities presented by recent legislation and the national strategies for promoting partnership working and collaborative practice. Nurses could approach this by combining their current involvement with developing the single assessment process for older people with the overall development of interprofessional collaborative practice across all boundaries in health and social services. Despite the new opportunities, this will not be straightforward because of the still existing problems associated with the health and social care divide. In order to generate high quality care, it is imperative for nurses and their patients that the profession gains control and ownership of its own policy, remit and practice. Nursing care should be defined according to the patient's condition, so that their dependency level, diagnostic picture and potential for rehabilitation govern the eligibility criteria for health or social care and not the level of technicality in the task itself.     

The experiences of lecturer practitioners in clinical practice

AIM: The aim of the study was to describe and understand the lived experiences of teaching for lecturer practitioners in the clinical workplace. BACKGROUND: Lecturer practitioners appear to have been introduced into practice to bridge the gap between academic and clinical learning although there appears to be little empirical evidence of how they work in clinical practice. METHODS: A qualitative approach was used in interpreting the transcribed interviews of five lecturer practitioners from different practice backgrounds working from the same university in the south of England. FINDING: Two synthesised interpretations of the lecturer practitioner experiences of teaching were described. One was of looking and seeing practice differently and challenging practitioners to do the same. The second was of working in the middle of the practice theory gap rather than trying to reduce it. CONCLUSIONS: Although the findings are not generalisable to other lecturer practitioners the participants appeared to work in partnership with practitioners to bring a change in the clinical environment where learning was supported and encouraged. The partnership appeared to place the onus on the practitioner to develop their practice and the lecturer practitioners appeared to work as an educational enabler.     

Vaginal birth after caesarean section (VBAC): exploring women's perceptions

Aims and objectives. This study was designed to complement local audit data by examining the lived experience of women who elected to attempt a vaginal birth following a previous caesarean delivery. The study sought to determine whether or not women were able to exercise informed choice and to explore how they made decisions about the method of delivery and how they interpreted their experiences following the birth. Background. The rising operative birth rate in the UK concerns both obstetricians and midwives. Although the popular press has characterized birth by caesarean section as the socialites’ choice, in reality, maternal choice is only one factor in determining the method of birth. However, in considering the next delivery following a caesarean section, maternal choice may be a significant indicator. While accepted current UK practice favours vaginal birth after caesarean (VBAC) in line with the research evidence indicating reduced maternal morbidity, lower costs and satisfactory neonatal outcomes, Lavender et al. point out that partnership in choice has emerged as a key factor in the decision‐making process over the past few decades. Chaung and Jenders explored the issue of choice in an earlier study and concluded that the best method of subsequent delivery, following a caesarean birth, is dependent on a woman's preference. Design and methodology. Using a phenomenological approach enabled a holistic exploration of women's lived experiences of vaginal birth after the caesarean section. Results. This was a qualitative study and, as such, the findings are not transferable to women in general. However, the results confirmed the importance of informed choice and raised some interesting issues meriting the further exploration. Conclusions. Informed choice is the key to effective women‐centred care. Women must have access to non‐biased evidence‐based information in order to engage in a collaborative partnership of equals with midwives and obstetricians. Relevance to clinical practice. This study is relevant to clinical practice as it highlights the importance of informed choice and reminds practitioners that, for women, psycho‐social implications may supersede their physical concerns about birth.