Informal Carers Research Project Report (3rd Draft, July 2000)

Front Cover

Crest – SEHB, W.I.T., and U.U.

The Health and Social Care Needs of Informal Carers of Older People:

An Exploratory Study

September 2000
Paula Lane, Research Officer, South Eastern Health Board / Waterford Institute of Technology;
Professor H.P. McKenna, Head of School of Health Sciences, University of Ulster;

Mrs Assumpta Ryan, Lecturer in Nursing, University of Ulster;

Mr Paul Fleming, Lecturer in Health Promotion, University of Ulster.

ACKNOWLEDGEMENTS

The contributions of several people must be acknowledged as central to this research study.

Our deepest thanks are extended to all the carers who consented to partake in the study.

Our appreciation is also conveyed to The Carer’s Association and The Alzheimer’s Disease Society for their co-operation and support in the project.

Many thanks to Ms. Louise Griffin for her administrative support, patience and good will during the project.

We are indebted to Mr.Tom Moffat, Minister for State at the Department of Health and Children who commissioned and funded the project.

Sincere thanks to Mr. J. Magner, Regional Manager at the South Eastern Health Board; who was instrumental in initiating the project.

We are most grateful to all the public health and community psychiatric nurses whose participation in the various data collection methods is sincerely appreciated.

Members of the Research Steering Group
  • Mrs. E. Carroll, Superintendent Public Health Nurse, Waterford Community Care Centre,
  • Mrs. H. Daniels, Director of Nursing, Waterford Regional Hospital;
  • Mr. Tony Gyves, Hospital Manager, St. Otterans’ Psychiatric Hospital, Waterford;
  • Mr. J. Magner, Regional Manager, South Eastern Health Board;
Dr. V. Martin, Head of Research and Development, Waterford Institute of Technology;
Academic Advisory Team
  • Prof. H. P. McKenna, Head of School of Health Sciences; University of Ulster,
  • Ms. A. Ryan, Lecturer in Nursing; University of Ulster;
  • Mr. P. Fleming, Lecturer in Health Promotion; University of Ulster;
Mr. B Cunningham, Statistical Advisor; University of Ulster.
EXECUTIVE SUMMARY

In 1999, the theme of the International Year of Older Persons was “Towards A Society For All Ages”. This theme fosteredthe concepts of inclusiveness and human unity, in opening up channels of multigenerational communication amidst a society where older people and their carers sometimes experience marginalisation. The designation of 1999 as the United Nations International Year of Older Persons has raised the profile of issues in relation to these population groups. Despite a significant growth in the academic literature on care-giving and carers’ needs in the past decade, many gaps remains at empirical, rational, and conceptual levels (George, 1994; Kellett and Mannion, 1999). Indeed, a clear understanding of the pertinent issues remains elusive (Gubrium, 1995). In Ireland, there is a dearth of empirical evidence regarding carers’ subjectively percei3ved needs and experiences. Ruddle et al (1997) highlight the lack of available data in many areas of the care of older persons, suggesting that a database to underpin policy and practice,

“…must be established through research on assessment of needs, exploratory research on possible services and solutions to address needs and problems and evaluation research on the services provided" (p.324).

Advancing Healthcare Research Initiatives

Recent fundamental changes in health care policy and provision in the U.K. (D.O.H; 1993) and Ireland (D.O.H; 1994) have emphasised the need for a research culture within the health services. The argument underpinning this revolves around the assumption that increasing the evidence base of practice may have a significant impact on the quality of care and consequently quality of life. Implicit within this cultural change, is the challenge to demonstrate more evidence based effective and efficient health and social care strategies to meet stakeholder requirements, and to do so in a flexible responsive manner. As a result, health service providers are becoming more research aware and more research active.

The South Eastern Health Board in association with Waterford Institute of Technology and The University of Ulster launched this research study in March 1999. Its aim was to assess perceived health and social care needs of informal carers of older people. The Board commissioned the project on the basis that it was both pertinent and timely to explore these issues in an attempt to promote the basic human rights of older people and their carers, based on independence, participation, self-fulfilment, care and dignity. The rationale prompting the study stemmed from drives within the South Eastern Health Board to inform future service plans, with the ultimate aim of using those inputs and service provision strategies shown to produce effective and efficient outcomes. This report was written to provide an evidence base for those involved in policy development, commissioning, planning and operationalising services in support of the carers of older people in home care settings.

THEMES FROM THE LITERATURE

On analysis of the extant literature, it was found that while some studies have explored carers’ needs, there is a dearth of consultative research exploring carers' subjectively perceived health and social care needs; particularly in Ireland. Many gaps remain in the evidence base pertaining to conceptual, rational and humanitarian aspects of care-giving. Specifically, the following points summarise the main themes identified:

  • Significant weaknesses were identified in relation to the nature of health and social care services as well as the planning, organisation and delivery of such services;
  • Contemporary approaches to determining carers’ needs and experiences are unsystematic, lack monitoring and evaluation and are predominantly normatively derived without structured consultation with carers themselves;
  • The importance of developing flexible, responsive approaches to addressing carers’ needs in a proactive way, particularly regarding support services is emphasised throughout the literature;
  • There is a need for greater flexibility and scope in the way multidisciplinary community care teams function in order to invoke more effective and efficient care interventions. In this regard, health promotion and health protection initiatives are central to maintaining and improving carers’ health and well being, as well as that of the care recipient;
  • Benefits should be constructed around positive experiences of care-giving, facilitated by cohesive systems of care and embracing opportunities for services such as respite care, socio- economic and emotional supports as well as practical assistance;
  • The segmented, haphazard nature of some areas of service provision reinforce the value of a thorough exploration and evaluation of current and future service plans in relation to carers’ needs. These needs transcend health and social care boundaries as well as areas such as education, housing and environmental health;
  • Measures to enhance communication and collaboration amongst relevant health service agencies within public, private and voluntary sectors require careful consideration.

RESEARCH AIM AND OBJECTIVES

The project, lies broadly within the thematic programme entitled; “Improving the Quality of Life and Management of Living Resources” (1998-2002), for research, technology, development and demonstration under the European Union’s 5th Framework Programme. The aim was to examine perceived health and social care needs among informal carers of older people, including mentally infirm persons and to explore their experiences of home care.

Objectives

To determine the prevalence of informal carers according to their geographical location, in an urban and a rural community;

  1. To conduct a comprehensive exploration of the profile, role and needs of informal carers to map their experience of caring;
  2. To identify coping strategies employed by carers;
  3. To explore the positive aspects of the caring role/relationship;
  4. To establish carers’ satisfaction in relation to:

(a) Quality of life;

(b) Information needs;

(c) Day care and respite care;

(d) Transport;

(e) Emotional support.

In fulfilling these research objectives, rigorous systematic approaches were undertaken at all stages of the research process. A mixed methodological approach, including focus groups, a self- administered questionnaire and in-depth interview techniques were undertaken to optimise the reliability and validity of the research process.

SUMMARY OF METHODOLOGY

Three focus groups were set up to explore informal carers’ subjectively perceived needs and experiences of caring for general as well as mentally infirm older persons. The issues arising from these focus groups influenced the content of the questionnaire;

In order to enhance further the development of the questionnaire, an expert panel was asked to review the questionnaire prior to its use;

A postal survey was used to estimate the number of carers known to public health and community psychiatric nurses;

A pilot study was undertaken with informal carers in a rural/ urban setting (N=40).

In the main study, the pre-tested questionnaire was distributed to informal carers (N=319). Participants represented a randomised rural/urban population mix from within the Waterford community care area of the South Eastern Health Board.

In order to obtain a more in-depth understanding of the experience of care-giving, respondents were asked if they would be willing to participate in a one-to-one interview aimed at eliciting richer data. This resulted in interviews with 10 informal carers. The purpose of the semi-structured interviews was to verify and explore further the variables arising from responses to the questionnaire.

The subsequent qualitative data were analysed through content analysis techniques. Quantitative data were analysed using the Statistical Package for Social Sciences, version 9 (SPSS, 1997).

FINDINGS

The reasons underlying service deficits are complex and multifaceted.From the data collected, the following findings emerged:

  • No evidence of existing registers of informal carers was found;
  • Inappropriate assumptions are sometimes made regarding carers’ roles, and responsibilities as well as their availability and ability to provide care. The importance of needs assessment was clear;
  • Health and social care boundaries mitigate against effective service provision;
  • Collaboration, communication and co-operation between carers and statutory and voluntary services require considerable improvement;
  • Services are sometimes inflexible, poorly matched to carers' needs, often only becoming a priority when a crisis occurs;
  • Lack of availability and reliability of some support services militates against enabling some carers to continue in their care-giving role;
  • Shortages exist in terms of practical support structures and resources. Some services display poor co-ordination and integration, evidenced by both service omissions and duplication;
There is a significant lack of awareness amongst carers regarding health and social care supports, benefits and entitlements. There is evidence of inequity and access difficulties for carers seeking information regarding necessary supportive interventions;
Key aspects of carer-dependent relationships expose a variety of perceptions of informal care. Misconceptions, pride and a sense of diminished independence amongst older people can result in poor use of support services. Two-thirds (62.7%) of the sample reported that they did not receive enough information about the availability of support services;
  • Almost half the sample surveyed (47.9%) reported care-giving as a twenty four-hour job, 89% of whom provided care seven days a week.The psychological impact of the care-giving role was quite profound. As one carer states:

“The stress is that you are twenty-four hours looking after them…it can take so much energy out of you, physically…your mind, body and soul”:

A carer in his late seventies, described the intensity of his role caring for his wife; who was suffering from Alzheimer’s disease stating

" I have to do everything…all day long, day and night. I can't get a decent sleep. I have to be awake at the drop of a hat”.

  • There is evidence of considerable bureaucracy in the organisation of some services.
  • Some carers experience a lack of control or power over their care-giving role, primarily where statutory bodies fail to consult with carers themselves.
  • Service delivery standards are highly variable with few accountability measures.

The nature and extent of the carers’ role is sometimes poorly understood. One carer encapsulated its impact stating:

"Slowly but surely, you see your own physical health and radiance going out of yourself... The spark goes out of you, you just get drained slowly."

This carer went on to state that this was:

"not a complaint…just a plea from the heart of the story of carers".

Many carers do not use respite services, citing reasons such as feelings of guilt or a belief that existing services were unsuitable to themselves or to the care recipient.

 Nonetheless, a quarter (24.5%) of respondents related that they never had a break from their caregiving role. A further two-thirds (66.7%) reported that they had never been offered respite care.

RECOMMENDATIONS

Reflecting on a variety of findings from the study, a number of recommendations for policy and practice emerge as essential prerequisites towards assessing and addressing carers’ needs:

Service Issues

  • From a service perspective, the findings highlight the importance of developing seamless, co-ordinated total systems of care aimed at facilitating an appropriate range of services in response to carers’ continuing health and social care needs. The value of a collaborative approach inclusive of both health and social care provision is important both at interdisciplinary and interorganisational levels in securing partnerships between statutory, private and voluntary agencies;
  • The anticipated continuing demands for family/voluntary care necessitates the integration of carers’ needs and perspectives in future service planning and decision-making networks, in partnership with statutory and voluntary bodies. The importance of co-ordination and partnerships in this regard cannot be overstated;
  • The need to develop continually an understanding of the effectiveness of specific health and social care interventions is of paramount importance;
  • Clarity and vision in required in relation to needs assessment structures for carers, coupled with explicit service goals tailored to respond to and meet these needs. Subsequent care plans must be evaluated and monitored, thereby ensuring that care needs are addressed and met;
  • Rapid response strategies focusing on individual carers’ needs in changing circumstances such as increasing levels of dependency, illness or potential crises are essential interventions;
  • The development of considered, systematic and objective care management practice is essential in order to accurately assess, monitor and evaluate carers' needs. Any such framework must take account of individual differences such as individual carers' ability, competency and age; as well as the dependency level of the dependent person;
  • Efficient evaluative and quality audit measures must be put in place;
  • Resource inefficiencies and inadequacies must be suitably redressed;
  • There is a substantial need for shared information systems across services in order to establish the ‘true’ prevalence of informal carers and meet assessment, planning, and operational requirements in a structured, systematic manner;
  • The reasons underpinning many of the problems identified in the study are multifaceted and require concerted action in order to identify and respond to gaps across a wide spectrum of issues in home care provision.

Policy Factors

  • Meaningful practice and policy changes, directed and informed by current advances in the evidence-base are required in order to redress service practice divides, thereby creating a more enabling environment in which local service decisions can be made;
  • The Department of Health and Children and the Department of Social Community and Family Affairs should commence information initiatives aimed at enabling carers to access relevant information regarding a range of support services;
  • Government departments should make explicit their policies in relation to informal carers. Such policies must recognise and acknowledge carers as unique individuals with distinct needs and abilities;
  • The distribution of resources such as economic supports and allowances warrants review and policy commitment and requires collaborative, cross-sectoral, co-ordinated planning across categories such as age, illness and social grouping;
  • The level of interaction between statutory services and carers requires exploration, monitoring and evaluation;
  • In acknowledging carers' needs and experiences, it is important that statutory care agencies develop new and innovative service plans in response to their continuing health and social care needs;
  • Education and training programmes should be established for carers in preparation for the care-giving role;
  • User-friendly resource centres for carers should be developed at local level;
  • A co-ordinator of carer support services should be appointed as a link person between carers and service providers. Such an advocacy service would increase awareness amongst carers as to the availability of service entitlements and benefits;
  • The health and social care boundary must be addressed;
  • Links must be formed across the totality of health and social care services, towards the development of more integrated, co-ordinated care pathways for carers;
  • Such approaches may result in the development of more efficient and effective use of resources in terms of reducing unnecessary institutionalisation. More importantly, since older people wish to remain at home for as long as possible, these pathways may enhance the quality of life of both the carer and the older person.
Recommendations for Further Research
  • Despite the significance of the current study, further research efforts must be encouraged by commissioning studies that seek to assess and evaluate care interventions and methods of service delivery;
  • Ongoing evaluation is required in order to map the quality and outcomes of support structures and processes aimed at addressing carers' continuing health and social care needs;
  • A central priority hinges on the need for community-wide, multidisciplinary, multiagency research, adopting an integrated, collaborative approach in areas of psychosocial, economic and social research;
  • Research efforts beyond task orientated aspects of care-giving are warranted as a means of exploring the humanistic components inherent in the art of caring;
  • There is a distinct lack of evaluative data on initiatives in the workplace to support carers;
  • Longitudinal studies are warranted with regard to the different needs and experiences that carers hold, focusing on gender variability issues, whether caring on a full time basis, or combining family caring with formal employment;
  • There is a growing emphasis on ‘second level’ research exploring what can be learnt from published studies in specific subject areas. Consequently, aggregate analysis of research findings may be formulated based on cumulative research evidence;
  • There is a need for improved identification and tracking measures in order to establish the 'complete' picture as to the prevalence of informal carers. New and innovative research initiatives, coupled with enhanced levels of cross sectoral communication will be required, particularly in uncovering 'hidden carers' who may be most in need of support services;
  • Meta analysis and collaborative, multidisciplinary research studies may produce formulae that reduce methodological or operational difficulties. Such strategies may provide a wealth of relevant data to better inform health and social care policy and service developments.

CONCLUSIONS