A typology of needs-led quality of life for persons with intellectual disability

by Richard Redmond Lecturer, School of Nursing and Midwifery, University of Dublin,Trinity College.

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Introduction

Until the decade of the nineties, service provision for people with intellectual disabilities was directed through the normalisation philosophy. This centred on how people with disabilities should be cared for and, in particular, what types of services should be provided for them. While the normalisation philosophy has fashioned the type of services made available to clients, it is seen as being an ideology that is service-led as against person-led (Seed and Lloyd 1997). Within the current paradigm of service provision, normalisation has been superseded with the more person-led construct of quality of life. Sanderson (2003) sees this person-centred approach as being about the recognition and enhancement of the person’s needs and in particular, their quality of life. The concept of quality of life with its components of subjective, objective and personal weighting to the individual is seen as both a replacement and advancement on normalisation (Brown 1996, Hatton 1997). It is grounded in the identification and satisfaction of personal needs of people and helping them achieve the lifestyle they want for themselves (Seed and Lloyd 1997).

Despite this paradigm of needs-led care and quality of life outcomes, the construct has as yet not been integrated within the thinking of nurses or their scope of practice (An Bord Altranais 2000, Northway and Jenkins 2003). More fundamentally, the majority of nurses working in residential services appear to limit their interventions on client needs to basic needs for physical care, safety and emotional support with little interventions surrounding growth or developmental needs (Redmond 2005).

This is not meant as a criticism of nurses, but a reflection of the more pressing and practical needs of clients with severe and complex disabilities. Failure to see and respond to other needs however means that holistic care is unlikely to be provided.

Needs-led care

According to Ovretveit (1998), good quality care is concerned with meeting the needs of clients as the outcomes of service interventions. Mattiasson and Anderson (1997) have pointed out that identifying the needs of clients is a determinant of quality nursing care which can be determined as the extent to which needs are actually met. Within the general framework for nursing practice, the ability of nurses to recognise needs in clients is a fundamental requirement of nursing care since according to Holtkamp et al. (2001), the practice of nursing is about identifying and meeting needs in patients/clients, whether they are sick or disabled.

Concept and theory of needs

From a conceptual analysis and clarification of the concept of needs and needs-led nursing, Stockdale (1989) advanced the following assumptions about human needs:

  • All humans have needs that lead to outcomes
  • Humans experience needs that have subjective meaning and importance
  • Needs change and have varying degrees of urgency and strength
  • Needs are not always recognised or acknowledged by the individual
  • Significant deprivation of needs will result in physiological and/or psychosocial harm
  • Nursing intervention has the potential to improve the well being of the human condition
  • Needs theory is applicable to all aspects of nursing practice

There are several needs theories (Murray 1938, Maslow 1954, Alderfer 1972, Yura and Walsh 1988). The needs theory used in this typology is based on the theory of motivation developed by Abraham Maslow (1954, 1970). The reason for choosing this theory is that both nursing models (McKenna 1997) and quality of life models (Brown et al. 1994) have been developed from it. In this theory there are five broad groups of needs divided between basic or deficiency needs and higher order or being needs. Basic needs such as for food, water and sleep are deficiency needs because if the individual does not meet them, that person will strive to make up the deficiency.

Higher-order needs include intellectual, aesthetic and self-actualisation needs. According to Maslow, only when the basic needs are at least partially satisfied can the individual have the time, energy and motivation to devote to these higher order needs. Maslow described his needs theory as taking a holistic view of the person while being dynamic in view of the ever-changing needs of the person. A criticism of this theory is that it has little empirical foundation since Maslow developed his ideas based on interviews with a few select people whom he considered to have self-actualised. Another criticism concerns his needs theory being hierarchical. However, before his death, Maslow recanted his early assertion that basic needs had to be met before higher needs could be achieved and acknowledged that early needs would have to be at least partially met. Theorists generally agree that humans have basic and higher order needs and while basic needs are necessary for survival, fulfilling secondary needs leads to growth and development of the person
Quality of life (QoL)

The current paradigm of service provision to persons with disabilities is grounded in outcomes of service for clients and in particular, personal outcomes (Gardner 1997). These outcomes are related to needs and find expression in the construct of quality of life. In an early paper on the subject, Landesman (1986) argued that an undeniable goal of service provision for individuals with intellectual disability was to enhance their quality of life thus making the construct important to practitioners. Quality of life emerged as an important construct in disability research and an integral part of the current service paradigm during the decade of the eighties (Felce and Perry 1995). There is a substantial and expanding literature on the subject much of which is concerned with conceptual issues, dimensions and their measurement (Felce and Perry 1996, Cummins 1997, Schalock and Verdugo Alonso 2002, Rapley 2003). These continue to be the subject of debate and are beyond the scope of this paper.

While writers differ on how they define quality of life, most agree that it is multidimensional with subjective and objective components in the person’s life weighed against their satisfaction with these. Despite its considered importance there is as yet no universal agreement on either the number or variety of dimensions that make up the concept (Rapley 2003). As intellectual disability nurses have been slow to integrate the construct into their thinking (Northway and Jenkins 2003) this may in part be accounted for by the lack of an agreement on definition and its dimensions.

This said, within the field of intellectual disability research, a level of consensus seems to exist on the definition and dimensions of the concept. Brown et al. (1992, p.111) for example, define quality of life as ‘the discrepancy between a person’s achieved and unmet needs and desires.’ Keith (2001) believes it to mean empowerment, autonomy, personal satisfaction and independence. Perry and Felce (1995, p. 60) define QoL as ‘an overall general well-being that comprises objective descriptors and subjective evaluations by the individual of their physical, material, social and emotional well-being together with the extent of their personal development and purposeful activity, all of which are weighted by a personal set of values’. They see QoL as the interaction between the circumstances or mode of a person’s life, their satisfaction with its various facets and their personal goals and values. Various writers have singled out different dimensions or components of quality of life. Schalock (2002) for example, identified eight components, which are listed in Table 1

Table 1. List of the eight dimensions (components) of quality of life (Schalock and Verdugo Alonso 2002, p.184)
Physical well-being
Emotional well-being
Interpersonal relations
Social inclusion
Personal development
Material well-being
Self-determination
Rights

From their extensive review of key literature sources, Felce and Perry (1995, pp.60-2) identified the five dimensions of quality of life seen in Table 2.

Table 2. Five dimensions of quality of life identified by Felce and Perry (1995)
Physical well being
Material well being
Social well being
Development and activity
Emotional well being

The areas identified by Felce and Perry (1995) are clearly not exhaustive but were chosen because they reflect the dimensions of a person’s life seen as being repeatedly singled out in the literature and about which there was most agreement. Based on this, these five dimensions constitute the quality of life outcomes against which Maslow’s five broad human needs are compared in the typology presented here.

Activities and interventions for clients

Nurses frequently engage clients in quite natural and normative activities, which they employ as therapy interventions with the expectation that they will meet particular needs in clients that in turn will lead to their growth and development. For example, nurses are likely to employ activities to foster speech and language in clients so as to develop their communication and self-advocacy skills (Grove et al. 2001, Ferris-Taylor 2003). They also use music, movement, art, play and leisure not just for the enjoyment these bring, but also for developing social skills, friendships, self esteem, physical coordination and various cognitive skills in clients (Slade 1995, Manners et al. 2003). In helping clients to live as normative a lifestyle as possible, nurses engage in disparate activities ranging from self-help, relationship and self-presentation skills. In addition, clients’ have to be helped to master a range of psychomotor and occupational skills to participate in some meaningful employment (Bush 2003).

Making connections between care interventions

In reality however, different people may engage clients in particular interventions with little regard for what each is doing or with little consideration to how any one activity may impact on another. A nurse might engage a client in a range of activities, which although individually important, are not linked with each other. It is unlikely that these rather disjointed activities will facilitate or lead to achieving particular quality of life outcomes. What is important is not just the engagement in an activity but how and in what way this particular activity is ‘connected’ to others. It must be said here that pursuing and achieving a desirable outcome in any one domain of quality of life is complex. For this reason, Seed and Lloyd (1997) stress the importance of ‘connections’ between different needs and between different dimensions of quality of life.

They point out that since a deficiency in one dimension of quality of life can affect other dimensions, considerations of outcomes in one dimension should be undertaken with respect to its connections with others. For example, if a person developed ill health (physical well-being dimension) this will be ‘connected’ to their ability to work and thus their income (material well being dimension) and probably their feelings and self esteem (emotional and social well being dimensions). Other micro-connections that apply to the individual include those of family, neighbourhood and workplace. Seed and Lloyd (1997) see more usefulness in connections between dimensions of quality of life network than in attempting to define discreet dimensions. For example, they suggest that rather than focusing on ‘work’ as a dimension, the important connections for this would include how work affects home life and vice-versa.

For a client to achieve a desirable outcome in any one quality of life dimension is, to say the least, complex. Seed and Lloyd (1997) stress that to facilitate a client to develop themselves in any one dimension requires not just that interventions be directed to several needs but that these needs-led interventions be consistently planned and integrated with the particular quality of life outcome in mind. Unless interventions are planned and organised to facilitate these ‘connections’ they are likely to amount to no more than fragmented time consuming activities.

A typology of needs-led quality of life

Table 3. A typology of needs-led quality of life for persons with intellectual disability (Redmond 2005)
Human Needs Dimensions (Maslow 1954)
Physiological
Quality of Life Dimensions (Felce & Perry 1995)
Physical well-being
Material well-being
Emotional well-being
Social well-being
Development and activity
Safety/security
Belonging
Self esteem
Self actualisation

A typology is a type of framework useful for illustrating the relationships between concepts as variables and is usually presented as a matrix with one lot of variables on the vertical axis and another lot on the horizontal axis. One can then consider how any one variable on the vertical axis can impact on any other variable along the horizontal axis at the point of intersection. While this typology does this it also uses two-way arrows to indicate the relationships between the variables of needs and quality of life. The arrows emphasise the complexity of the relationships between needs and quality of life outcomes and are meant to alert the user to how needs both affect and are themselves affected by quality of life outcomes. The typology is constructed from two broad theoretical positions of human needs and quality of life and the connections between them. It is descriptive as against being predictive but it should sensitise nurses to the range of needs that individual clients have and how meeting these can help foster particular outcomes of their quality of life. Table 3 above is the typology of needs-led quality of life for persons with intellectual disability

Applications of the typology

The typology has many potential applications. It can help nurses and others in their thinking about how meeting different needs in clients can enhance their quality of life. It can assist with what Sanderson (2002) describes as the family of planning styles that includes person centred planning to achieve a better life for people with intellectual disability. It can highlight gaps in care provision, form part of records of clients overall development and assist with evaluation of care. In practice settings, the typology will have a number of uses. By presenting the typology in the form of an A4 or A3 sheet of paper to allow completion, it can form part of the client’s care plan. Alternatively, it can be transferred to a computer where it can be incorporated as part of clients’ computerised care plans. By observing how needs intersect with particular dimensions of quality of life, nurses and other service staff will be aware of how an individual client’s needs may impact upon particular quality of life outcomes. In the grid space where specific needs and quality of life dimensions intersect, the nurse can do a number of things including:

  • Note observations and then use these as discussion points with the care team.
  • Comment on strengths, weaknesses, and areas for further development.
  • Discriminate between those needs that are met and unmet in clients.
  • Map the extent to which met needs are related to quality of life dimensions.
  • Identify gaps in meeting particular needs in clients
  • State goals or performance objectives to close gaps in clients needs.

Added to these are the observations of Seed and Lloyd (1997), who see alternatives to scales and questionnaires for measuring quality of life including structured discussions and personal diaries filled out by the person or a personal carer. This typology can make a valuable contribution to any structured discussions about clients.

Conclusion

This paper presented a typology of needs-led quality of life for persons with intellectual disability. The typology was developed from two broad theoretical positions. A rationale is provided for the typology and its potential applications were discussed. Whereas the typology can make a contribution to understanding and thinking about how needs are related to achieving quality of life outcomes for clients, it is not intended to indicate that a linear relationship exists between specific needs and outcomes. The use of two-way arrows indicate that relationships of needs to outcomes are complex and it is likely that to achieve any particular quality of life outcome will require that many needs be met. Thus the typology recognises the connections between all the variables. Finally, while this writer sees these variables as important, they may be modified or extended to include others or, alternative needs theories and or quality of life dimensions can be substituted for the ones used here.

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