Definition and Nature of Care

• Care is a complex and debated concept, shaped by:

o Philosophical
o Ideological
o Political
o Economic arguments (Phillips, 2007)
• No universal or objective definition; meanings vary with context and perspective.

2. Types of Care

• Formal Care:
o Provided by statutory agencies, voluntary groups, and private organizations.
o Delivered by paid professionals in structured settings (e.g., hospitals, care
homes).
o Relationships marked by affective neutrality (professional detachment).
• Informal Care:
o Unpaid and provided by family, friends, and neighbors.
o Based on personal relationships, kinship, and emotional bonds.
o Takes place mostly in homes and private settings.
o Majority of informal carers are women (Ungerson, 1983).
o Example: 6.8 million informal carers in Great Britain (Maher & Green, 2002).

3. Conceptual Components of Care (Bulmer, 1987)

1. Physical tending – direct personal care (e.g., feeding, bathing).

2. Material/psychological support – help without physical contact (e.g., financial,
emotional).
3. General concern – emotional and moral concern without direct support.

• Leads to distinction between:

o Caring for – practical help (Parker, 1981)
o Caring about – emotional concern
• Hilary Graham further distinguishes:
o Caring-as-transaction (labour)
o Caring-as-feelings (emotional connection)

4. Emotional Aspects of Caring

• Informal caring is often emotional labour, with love, affection, and obligation.
 • Twigg & Atkin (1994): Carers provide identity-affirming emotional support.
• Emotional ties may precede or develop through the caring process.
• Graham (1983): Informal care can be a labour of love, even when affection fades.

5. The Role of Informal Carers in Community Care

• Emphasis on community care policies in health and social care.

• Most care (especially minor illnesses in children) occurs at home.
• Understanding family structure and social changes is key to understanding care roles.

6. Care Over the Life Course (Phillips, 2007)

• Care is not one-directional:

o Carers can become care recipients and vice versa.
o Care is often reciprocal and interdependent.
o Examples:
▪ Children supporting parents emotionally
▪ Young carers assisting disabled parents
▪ Adult children caring for elderly parents
• Adopting a life course perspective helps understand care’s complexity.

7. Care vs. Social Care

• Social care: Emphasizes caregiving regardless of setting or provider (home,

community, institution).
• Involves both physical and emotional labour.
• Ongoing debate on:
o Boundary between medical care and social care
o Overlap and interconnection between the two (Phillips, 2007)

What is Community Care?

• Hard to define, but generally refers to:

1. Care for people formerly in long-stay institutions.
2. Supporting vulnerable people (disabled, elderly, etc.) to live in the community.
3. Unpaid support from family, friends, and neighbours.

History & Origins

 • The term “community care” first appeared officially in 1930.
• In the 19th century, home care was seen as a way to reduce hospital numbers, not as a
better alternative.
• 1957 Royal Commission defined community care broadly, and its ideas shaped the 1959
Mental Health Act.
• 1960s–70s: Shift in thinking due to:
o Negative reports about mental hospitals (e.g., Goffman’s “total institution”).
o Reports of abuse and neglect (e.g., Robb, 1967).
o Concept of “institutional neurosis”—harm caused by the institution itself.

Policy Developments

• 1960s: First mentions of “care in the community,” but with no clear plan (Jones, 1988).
• Seebohm Report (1968): Called for a community-based, family-oriented service.
o Encouraged partnerships between public services and the community.

Shift in Responsibility

• 1981 White Paper “Growing Older”: Emphasis on informal care (family, friends).
o Public services should support, not replace this care.
o Introduced the idea of “care by the community” (not just in the community).

Problems and Criticisms

• 1980s: Community care policy seen as mostly rhetoric, lacking real action.
o Not enough resources for mental health patients after hospital discharge.
• 1985 Select Committee: Criticised poor implementation—called it a “crisis in the
community.”
• 1986 Audit Commission: Recommended funding changes; suggested independent care
managers.

Griffiths Report (1988)

• Found big gap between policy rhetoric and actual practice.

• Key recommendations:
o Appoint a Minister for Community Care.
o Social services should coordinate and purchase care, not always provide it.
o Emphasised joint planning with health and voluntary services.
 • Led to the White Paper "Caring for People" (1989) and later the 1990 NHS and
Community Care Act.

1990 Act Goals

• Support independent living.

• Offer choices to users.
• Focus on those most in need.
• Emphasised a “mixed economy of care” (public, private, voluntary, informal).
• Introduced the “purchaser-provider split.”

Limitations

• Early 1990s: Criticisms about lack of support for carers and vulnerable adults.
• 1995 Carers Act tried to improve this, but legislation seen as fragmented (Clements,
2004).

New Labour (Late 1990s–2000s)

• Focused on modernising and improving existing services rather than big structural
changes.
• Promoted:
o Partnership working between sectors.
o User-focused services.
o National strategies (e.g., for carers).

Key Themes Over Time

• Movement from institutional to community-based care.

• Shift from state-provided to informal, voluntary, and private care.
• Emphasis on cooperation, choice, and user independence.
• Policy often driven more by critique of institutions than proven benefits of community
care.

Definition of ‘Community’

• The term is widely used but poorly defined in policy and sociological contexts.
• Sociologists have identified many definitions – Hillery (1955) found 94.
 • Emotional and idealized associations often obscure critical analysis (e.g. “God word”).

Three Main Types of Community (Willmott)

1. Territorial Community: Based on location (e.g. town, estate).

2. Interest Community: Based on shared characteristics (e.g. religion, ethnicity,
occupation).
3. Community of Attachment: Based on social relationships, belonging, and shared
identity.

Factors Supporting Attachment Communities:

• Stable population, family presence, shared class/income, local organizations, etc.

Debate: Is Community in Decline?

Tönnies' Theory (1887)

• Gemeinschaft (Community): Traditional, rural, close relationships, shared values.

• Gesellschaft (Society): Modern, urban, impersonal, formal, self-interested.
• Believed urbanisation and industrialisation weakened community bonds.

Critique: His views were idealized and emotionally biased, not meant as literal descriptions.

1950s–60s Studies on Working-Class Communities

• Young & Willmott (1957): Found strong kinship networks in East London (Bethnal
Green).
• Criticism:
o These communities may no longer exist due to modern housing and mobility.
o May have been romanticized or based on public accounts, not private realities.

Modern Challenges to Community

• Increased mobility weakens traditional ties.

• Families more private and isolated.
• Some studies suggest traditional communities never truly existed as portrayed.
Example:

• Cornwell (1984): Found discrepancies between public and private perceptions of

community.

Internal Divisions Within Communities

• Not all communities are harmonious.

• Conflict, diversity, and change are often overlooked.
• Example: Rural areas transformed by newcomers → “encapsulated communities”.

Sociological Implications

• Must distinguish between:

o Empirical descriptions (what is)
o Normative prescriptions (what should be)
• Policies based on idealized versions may not be effective.

Modern Forms of Community

• Dispersed Communities (Willmott, 1989): People connect across wider distances due to
technology and transport.
• Community has adapted, not necessarily declined.

Policy Relevance

• Health and social care policies must acknowledge diversity and real community
dynamics.
• Need for understanding how support networks function in practice.

The Family

• What is a family?
o Not just genetics (parents and children)
o Could be a social construct or economic unit
o Also a store of shared memories, love, connection
• Community Care & Family Role
 o ‘Community care’ often means unpaid carers in the community
o Family is central in providing informal healthcare
o Most healthcare happens at home, within family context
o Family is the basic healthcare unit (Litman, 1974)
o Community care policy increases family’s role in care provision
• Importance of Understanding Family
o Need to understand family’s changing nature and structure in modern Britain
o This impacts informal care provision

What is a Family?

• Family = basic unit of social organisation

• Seen as essential for stable society
• Some see decline in family as cause of social problems (e.g., teenage crime)
• Traditional ‘ideal’ family: married heterosexual couple with children, male breadwinner,
female housewife
• This ‘nuclear family’ is a stereotype, not always reality

Family Diversity & Changes in Britain

• Traditional married couple with children declined:

o From 35% (1971) to 21% (2008) of households
• Increase in people living alone (29% currently vs. 18% in 1971)
• Lone-parent households increased (3% in 1971 to 7% currently)
• Multi-family households declined and stabilized at ~1%
• Cohabiting and lone-parent families increasing
• Married couple families decreasing by 4% (1996-2006)
• Lone-mother families increased 11%+
• Cohabiting families increased over 60%
• Over 20% of children live in lone-parent families
• Some families are step or reconstituted families (~7%)
• Family types vary by ethnic group (see Table 8.1 data)
• Term ‘families’ better than singular ‘family’ due to diversity

Social Change & Family Life

• Industrialisation thought to change family structure:

o From extended multi-generational households to nuclear families
o Extended family provided mutual support (care for young, old, sick)
o Industrialisation → geographic mobility → smaller families
 • This view challenged:
o Three-generation households were rare in 19th century due to life expectancy
o Industrialisation may have encouraged extended households to take advantage of
work opportunities

Table 8.1 (Summary of Dependent Children by Family Type & Ethnic Group,
2008)

• Married couple families: Majority in Asian/Asian British (87%), lower in Black or

Black British (46%)
• Cohabiting couples: Low overall (~13%), varies by group
• Lone parent families: Higher in Black or Black British (48%), Mixed ethnicity (39%),
lower in Asian/Asian British (13%)

Changes in Family Formation and Structure

• Industrialisation's impact on family:

o Traditionally thought to cause decline of extended families
o Led to rise of nuclear family units
• Pre-industrial family:
o Multi-generational kin in one household
o Agriculture-based, self-supporting
o Extended family shared caregiving for young, old, sick
• Industrialisation effects:
o Increased geographic mobility of labor force
o Disrupted rural communities and kinship ties
o Resulted in smaller, nuclear family units
• Challenges to this traditional view:
1. Three-generation families (with grandparents) were rare in 19th century due to
lower life expectancy (Laslett & Wall, 1974)
2. Industrialisation may have actually encouraged extended households to form, not
reduced family size (Anderson, 1971)

Internal Dynamics of Family Life

Conjugal Roles and Division of Labour

• Understanding informal healthcare within families requires examining:

o Role relationships between spouses (conjugal roles)
o General division of labour at home
 • Focus is on gender (sex) roles in the family

Functionalist View (1950s–60s) – Parsons (1956):

• Instrumental roles (men): Breadwinner, works outside the home

• Expressive roles (women): Caregiver, maintains emotional wellbeing
• Segregated roles = essential for nuclear family stability and adult identity

Challenges to Functionalist View:

1. Increased female workforce participation:

o 1971: 56% of women (16–59) were economically active
o 1997: Rose to 71%
o Families with both parents working rose from 50% (1980s) to 60%+ (1990s)
2. Less differentiated roles emerging:
o Goldthorpe et al. (1969): Rise of ‘privatised family’ – men more involved in
home life
o Young & Willmott (1973): ‘Symmetrical family’ – increasing equality in
domestic roles

Realities of Domestic Work:

• Even with dual earners, women do more housework (Pahl, 1984)

• Feminist research: Challenges idea of equality
o Men often choose preferred tasks (e.g., bathing kids) but avoid responsibility for
routine chores (e.g., cleaning, cooking)
o Ideology: Men = earners, Women = carers
o Domestic labour remains gendered

Implications for Informal Healthcare:

• Despite changing roles, women still carry most caregiving burden

• Male involvement in domestic tasks does not equal taking responsibility
• Gender stereotypes and unequal division of labour affect men’s role in informal care
provision

Informal Care

Definition and Ambiguity

• No universal definition of an “informal carer” – varies among researchers, policymakers,

and carers (Dahlberg et al., 2007).
Who Provides Informal Care?

Gender and Caregiving

• Families are primary sources of informal healthcare.

• Care is predominantly done by women:
o “Family care generally means care by women” (Equal Opportunities Commission,
1982).
o Female primary kin carry most of the caregiving burden (Allan, 1985).
o Caring is socially constructed as “women’s work” (Graham, 1983).
o Women care not just for spouses/children but also the elderly, sick, and disabled.

Lifelong Caring Role of Women

• Women often care for:

o Own children → elderly relatives (including in-laws) → grandchildren
(Phillipson, 1981).
• Gender stereotypes link women to nurturing roles and tasks like personal hygiene,
considered taboo for men (Ungerson, 1983).

Gendered Expectations & Kinship Norms

• Carers are chosen based on gendered kinship norms (Ungerson, 1987).

• A hierarchy of caregiving obligations exists, usually placing women first (Parker,
1990).
• Contributing factors:
o Stereotypes of women as naturally caring
o Gender inequalities in job opportunities and pay

Negotiability of Care Norms

• Finch (1989): Kinship rules are not fixed – caregiving roles can be negotiated.
• Context and strength of family ties affect caregiving arrangements.

Women’s Roles in Informal Healthcare (Graham, 1985)

1. Provider:
o Create a healthy home (cleanliness, nutrition, safety).
2. Negotiator:
o Teach and model health behavior (diet, discipline).
o Pass on a cultural understanding of health and illness.
 3. Mediator:
o Connect family with formal healthcare professionals (GPs, nurses).
o Act as a bridge between informal and formal healthcare systems.

Invisibility of Care Work

• Much of women’s care is ‘invisible’ and ‘privatised’ (Graham, 1983).

• It merges into daily household routines and is often unrecognized.

Male Carers – A Growing Minority

• 2001 Census & 2000/01 Household Survey:

o 5.5 million adult carers in the UK
▪ 3.2 million women
▪ 2.3 million men (Pickard, 2007)
• Men do contribute to informal care, but women remain the majority.

The Costs of Informal Caring

Positive Aspects

• Improves patient well-being.

• Enhances community social capital and general population health (Cooper et al.,
1999).

Negative Aspects & Burdens on Carers

• Not just a resource – informal care places strain on carers and families.
• Adverse effects:
o Health: Both mental and physical
o Family dynamics
o Community interaction

“Families are not static resource banks… they experience stress and must cope
interdependently.” – Ell (1996)

Dimensions of Care Burden

• Objective: Actual tasks performed (e.g. time, physical help).

 • Subjective: Personal experiences and emotional impact.

Research Findings (Box 8.3)

• 1 in 6 adults provides informal care.

• 58% women, more likely to care for those outside the household.
• 4% care 20+ hours/week; 60% of those are women.
• 49% working, 26% retired, 25% unemployed/inactive.
• 1 in 3 care for someone in the same household.
• 1 in 5 carers have done so for 10+ years.
• Half care for someone aged 75+.
• Most provide practical help (e.g. meals, shopping, laundry).
• 6,000 people begin caring responsibilities daily.

Costs of Caring

Physical

• Particularly demanding for those with:

o Disabilities
o Chronic illness
o Degenerative conditions
• Help required with basic activities: washing, dressing, eating, toileting.

Emotional

• High stress levels, especially with:

o Incontinence care
o Aggressive or difficult behaviour
• Feelings of role captivity and loss of self (Pearlin et al., 1990).

Financial

• Increased expenses: laundry, heating, transport.

• Home adaptations for mobility.
• Loss of earnings due to reduced or ceased employment.
• Impact on career prospects and pension entitlements.

Work can provide both income and a form of emotional escape.

Social
 • Leads to social isolation (Jones and Vetter, 1984).
• Restrictedness (Twigg & Atkin, 1994):
1. Physical care limits social freedom.
2. Anxiety about leaving the cared-for alone.
3. Shared restrictions (e.g., partner’s limits affect carer too).

Modes of Response to Caring (Box 8.5)

1. Engulfment: Caregiver’s life completely dominated by caring.

2. Balancing/Boundary-setting: Tries to maintain autonomy.
3. Symbiosis: Derives personal value and satisfaction from the role.

Gender influences response modes:

• Women more likely to be engulfed.

• Men more likely to set boundaries.

Case Studies

• Mr. Ensbury (Box 8.4): Continued working to afford paid help, illustrating how
employment sustains caring.
• Elsie & Christine (Box 8.6): Mutual caring between mother and daughter, supported by
services, preserving emotional bond.

Other Key Insights

• Carers’ experiences shaped by:

o Individual personalities
o Social and cultural expectations
• Carer burden increases with patient’s disability/distress level.
• The caring role is dynamic and transitional:
o Especially in degenerative diseases.
o Alternates between stability and distress.

Dyadic Health Concept (Forbes et al., 2007)

• Carer and care recipient form a shared health unit.

• Common carer health issues: tiredness, anxiety, depression.
Young Carers

General Context

• Research and surveys on informal carers often overlook young carers.

• Described as a ‘literature of omission’ (Aldridge & Becker, 1993a).
• Recognition of young carers as a specific group is recent (Walker, 1996).
• 1.4% of children in the UK provide informal care within their family (Doran &
Whitehead, 2003).

Experiences and Challenges

• Similar challenges to adult carers:

o Physical demands (especially with impaired mobility).
o Social isolation – ‘silent curfew’ (Aldridge & Becker, 1993a).
o Educational disruption – missed schooling, affects long-term prospects.
• Young carers often hide their role from peers, fearing social misunderstanding.

Need for a Child-Centred Perspective

• Recognizing young carers’ experiences as unique is crucial.

• Aldridge & Becker’s study (1993b, Nottingham):
o Children associated caring with punishment.
o Fear of professionals (e.g., social workers might remove them from home).
o Inconsistent support – age cutoffs for service withdrawal range from 12–16.
o Perception of being punished through loss of support.

Issues with Professional Support

• Young carers often overlooked by professionals.

• Focus remains on the care recipient, not the child.
• Some CCAs believed support could be removed once children "cope".

Quote (Aldridge & Becker, 1993b, p. 381):

• Highlights inconsistencies and consequences of arbitrary service withdrawal.

• Adult carers continue receiving help; children may not.

Box 8.8 – Key Impacts on Young Carers (From “Something to Think About”,
1995)

• School problems, missed qualifications.

• Lack of play, leisure, sports.
• Isolation from peers and family.
• Guilt and resentment due to conflict between personal and caring needs.
 • Feeling unheard by professionals.
• Lack of recognition or praise.
• Feeling different and misunderstood.
• Difficulty transitioning to adulthood – work, home, relationships.

Caring for the Mentally Ill Within Families

Social Perceptions

• Mental illness = personal defect; physical illness = external cause.

• Mental illness is perceived as long-term; physical illness is short-term.
• Stigma affects acceptance of the "sick role" for the mentally ill.

Policy and Practical Implications

• "Care in the community" policy led to more family-based care.

• Family members experience significant lifestyle disruptions.
• Emotional and financial burdens common.
• Reduced income if carer has to leave employment.

Emotional Impact on Carers

• More distress from symptoms and behaviour than financial strain.

• Behavioural symptoms (e.g., aggression, silence, irrationality) raise emotional stress.
• Carers are emotionally involved, unlike professionals.

Common Carer Emotions

• Anger, grief, guilt, resentment (Jones, 1996).

• Anger often directed at professionals for lack of guidance.
• Emotional climate at home described with metaphors like:
o “Living on the edge of a volcano” (Creer & Wing, 1974).
o “Living on the edge of the world” (Jones, 1996).

Family Tension

• Blame and guilt when no biological explanation for illness.

• Parents may feel responsible for their child's psychiatric condition.

Physical Health Effects

• Caring has negative health impacts on carers.

• Alzheimer’s carers report more illness and poorer health (Haley et al., 1987).
 • Effects depend on:
o Severity of the illness.
o Kinship between patient and carer (Gallagher & Mechanic, 1996).

Kinship and Normative Expectations

• Western societies focus on immediate family.

• Mothers are primary carers.
• Children are expected to become independent, not caregivers.
• Adult children caring for elderly parents is more socially accepted.

Stress and Relationship Type

• Less normative dependencies (e.g., parents caring for adult children) are more
stressful.
• Supported by National Health Interview Survey (USA):
o Carers of mentally ill adult children reported worse physical health than those
caring for spouses.

Caregivers – Policy Context: Key Points & Notes

1. Why Policy Support for Carers Matters

• Informal (unpaid) care prevents extra demand on state-funded services.

• Ageing population (esp. 75+) and longer lives for disabled children ⇒ future demand
for informal care will rise.
• Availability of carers is shaped by demographic, economic, and social trends (e.g.,
more lone-parent, cohabiting, or re-constituted families).

2. Key UK Policy Milestones Supporting Carers

Year Policy / Act Core Provision for Carers

Acknowledged families & friends provide the “great

1989 White Paper — Caring for People
bulk” of community care.

Assessments for service users must consult carers’

1990 NHS & Community Care Act
views.

Carers giving “substantial & regular” care entitled to

1995 Carers (Recognition & Services) Act
their own needs assessment.
 Year Policy / Act Core Provision for Carers

Duty on councils to assess carers on request,

2000 Carers & Disabled Children Act
independent of the cared-for person.

Councils must inform carers of their rights and

2004 Carers (Equal Opportunities) Act
consider their work, training & leisure needs.

Our Health, Our Care, Our Say (White New Deal for Carers: national information service +
2006
Paper) training programmes.

Carers at the Heart of 21st-Century Ten-year vision for carers to be “universally recognised
2008 Families & Communities (Updated and valued”; pledges on dignity, health, finances, and
National Strategy) life beyond caring.

Carers treated as expert partners, not forced into

2018
— hardship, protected from ill-health; young carers
target
safeguarded from inappropriate roles.

3. Current Policy Focus

• Outcome measurement: Track health & social-care results including impact on carers
(Hirst, 2002).
• Move toward a single, community-based support system offering independence and
choice (DOH 2008b).

4. Principles in Recent Strategy (2008 → 2018 Vision)

1. Carers recognised, respected, and treated as expert care partners.

2. Easy access to tailored services.
3. Ability to live their own lives alongside caring.
4. No financial hardship due to caring.
5. Support to stay mentally & physically well.
6. Young carers protected and given a “positive childhood”.

5. Research & Service-Design Implications

• Carers are diverse; policies must avoid one-size-fits-all assumptions.

 • Sub-groups need targeted study (e.g., young carers, ethnic-minority carers, long-distance
carers).
• Adopt a dynamic, life-course perspective:
o Some carers enter/exit quickly; others care for decades.
o Understanding transitions helps tailor timely support.

6. Key Takeaways for Practice

• Embed carer assessments in all care planning.

• Provide flexible, personalised respite & information.
• Recognise carers’ contributions in employment, education, and health settings.
• Monitor outcomes for both the care recipient and the carer to refine support systems over
time.