Tolerating Uncertainty: Future Perceptions of Ageing Parent Carers and Their Adult Children with Intellectual Disabilities

Background and Rationale

Over the last two decades improved medical, social-care and public-health interventions have lengthened life expectancy for people with intellectual disabilities (ID). Consequently, a growing number of adults with ID now co-reside with parent carers who are themselves entering older age. UK estimates place the figure at \approx 29\,000 adults with ID living with a family member aged > 70; comparable patterns are reported internationally.

This demographic shift raises several intertwined problems: (1) escalating care demands on ageing parents; (2) heightened risk of crisis placements when carers die or become incapacitated; (3) frequent absence of explicit future plans within families; (4) marginalisation of the voices of adults with ID in planning their own lives; and (5) service-delivery systems that remain reactive rather than anticipatory despite policy initiatives such as Valuing People (2001) and the White Paper Caring for our Future (2012).

Earlier research portrays caregiving as a mixed experience—high levels of burden, stress and depression coexist with high levels of meaning, satisfaction and perceived purpose. Determinants of parental well-being include: availability of social support, appraisal of caregiving roles, additional caregiving responsibilities, and the challenging behaviour or complex health needs (e.g., epilepsy) of the adult child.

A recurrent and paradoxical observation is that although anxiety about the future is pervasive, most families do not formulate concrete plans. Parents often fear relinquishing care because they doubt that external services will provide comparable quality; reciprocal emotional dependence, fear of loneliness, and the perceived “purpose” caregiving confers on late-life also function as barriers. Siblings are sometimes tacitly nominated as future carers without open negotiation, and adults with ID themselves are rarely consulted.

The current study addresses these gaps by exploring both sides of the dyad—older parents and the adults with ID they care for—in a single analytic frame.

Key Concepts and Definitions

• Intellectual disability (ID): significant limitations in intellectual functioning and adaptive behaviour, originating before age 18.
• Parent carer: a parent who continues to provide substantial daily support to an adult child with ID.
• Tolerating uncertainty: the overarching psychological and relational process through which families manage—not resolve—anxieties about an unpredictable future.
• Safe vs. unsafe uncertainty (Mason, 1993; Dallos & Draper, 2010): a continuum describing whether individuals face uncertainty with curiosity and flexible planning (safe) or feel overwhelmed and paralysed (unsafe).
• Perpetual parent / eternal child (Todd & Shearn, 1996): systemic patterns in which parents remain lifelong carers and view adult children as permanently dependent, curtailing opportunities for autonomy.

Study Aims

Generate a detailed thematic account of how ageing parents and their adult children with ID perceive the future.
Illuminate convergences and divergences between the two perspectives.
Provide clinically actionable knowledge to assist services in supporting proactive, individualised future planning and therefore prevent crisis care.

Methodology

Design

Originally conceived within a constructivist grounded-theory framework (Charmaz, 2006), the project ultimately reported data using Braun & Clarke’s (2006) reflexive thematic analysis. Grounded-theory tools (constant comparison, memo-writing, theoretical sampling within constraints) shaped data collection, but themes—not a full theory—are presented.

Viewing “perceptions of the future” as the unifying phenomenon, the researchers analysed parent and adult-child transcripts together, explicitly according equal epistemic status to adults with ID. Ethical approval was granted by University and NHS committees.

Participants

Purposive sampling via one UK Community Learning-Disability Team yielded n = 12 individuals from 6 family units:

• Older parents: n = 9 (6 mothers, 3 fathers), ages 65–85 (M{age} = 76). One mother was widowed; all others married. All identified as White British. • Adults with ID: n = 3 (2 males, 1 female), ages 38–57 (M{age} = 45), all mild ID per clinical judgement.

Clinicians pre-screened potential ID participants for capacity to engage in semi-structured interview with visual aids.

Data Collection

Separate, home-based semi-structured interviews (parents ≈ 60 min; adults with ID ≈ 30 min) covered: lifetime caregiving experiences; perceived advantages/disadvantages; daily support patterns; existing formal/informal supports; hopes and fears about the future; and preferred living arrangements. Parent and adult schedules mirrored each other (see Appendix). All interviews were audio-recorded and transcribed verbatim.

Data Analysis

Initial open coding—line-by-line, data-proximal labels.
Focused coding—sorting initial codes into higher-order patterns.
Theme development—memo-writing, diagramming, constant comparison to refine properties and boundaries.
Reflexivity—researcher diary and supervisory audits established analytic rigour.
Theoretical sufficiency rather than saturation acknowledged given small sample size.

Contextual Family Portraits (Vignettes)

Family vignettes provide ecological texture:

• F1 (Jack & Nancy, 80\text{s}) care for Mark (57) with epilepsy; Nancy has emerging memory problems, shifting tasks onto Jack.
• F2 (Susan & Robert, late\,60s) care for Kate (44) with mild ID + autism; Susan’s health decline and Kate’s wish for supported living catalyse planning.
• F3 (Mary & Michael, 70\text{s}/80\text{s}) care for Ian (53) with autism; Michael’s bowel-cancer treatment increases Mary’s dual caregiving load.
• F4 (Barbara, mid\,80s) widowed, cares for Anthony (54); recent physical deterioration led to 3-day-per-week paid support.
• F5 (Theresa & Brian, 70\text{s}) care for Jessica (52) with severe post-stroke disabilities; high formal-care input.
• F6 (Eileen & Liam, mid\,60s) care for Oliver with rare genetic syndrome causing anxiety/depression; receive community carer help.

Results: Thematic Framework

Overarching Theme – “Tolerating Uncertainty”

A continuous, lifespan process through which families modulate anxiety regarding deteriorating parental health, mortality, and prospective care arrangements. Predominantly passive (“take each day as it comes”) but occasionally shifts to active problem-solving when crises (e.g., cancer diagnosis) sharpen awareness.

Sub-theme 1 – Accepting the Parenting Role

• Initial grief and shock—“loss of the imagined child” compounded for some by earlier bereavements.
• Caregiving reframed as “way of life” or “job”; unconditional love facilitates role integration.
• Metaphor: Changing the parenthood script—families pivot from certainty about normative milestones to accepting indeterminate, open-ended caregiving trajectories.

Sub-theme 2 – Facing Challenges

• Dynamic complexity of the adult child’s condition (epilepsy, autism, mental-health problems) introduces daily unpredictability.
• Behavioural challenges (self-injury, anxiety) escalate emotional labour. Oliver’s hair-pulling and skin-picking described as both his coping and parents’ distress.
• Practical restrictions: constant supervision (“two shadows”), limited leisure, employment modifications, perpetual time-pressure.
• Equation of labour: Total\,Care\,Time = Personal\,Care + Emotional\,Support + Logistics → grows as both generations age.

Sub-theme 3 – Being Supported / Being Isolated

• Informal support—extended family, neighbours—buffers stress.
• Formal services are double-edged: essential day-centres and outreach carers offer respite yet are perceived as fragile (budget cuts) or unreliable (staff sickness, high turnover).
• Adults with ID fear loss of valued services (“My centre is closing!”).
• When services disappoint, families describe social shrinkage and self-reliance: “the family is it basically.”

Sub-theme 4 – Positive Meaning Making

• Savouring child’s enjoyment (trip to the sea) yields vicarious happiness.
• Caregiving confers daily structure and existential purpose (“makes me cook a proper meal”).
• Downward comparison and pride in coping enhance self-efficacy: “how on earth did I cope?” becomes rhetorical affirmation.
• Reframed narrative: burden ↔ benefit dialectic supports psychological resilience.

Sub-theme 5 – Re-evaluating as Time Moves On

• Recognition of finite parental capacity—“we don’t last forever”—prompted by health decline or bereavement of spouse.
• Adults with ID also self-reflect; some (Kate) articulate desire for independence, whereas others (Ian) cling to home permanence.
• Transition readiness thus varies intra-familially.

Sub-theme 6 – Managing Future Thinking

• Spectrum from avoidance (“background worry we don’t talk about”) to proactive engagement (Susan helping Kate learn domestic skills).
• Parents’ fear: Future\,Quality{care} < Present\,Quality{parent}; some even express wish that child pre-decease them to avoid suffering.
• Adults with ID: ambivalence—independence imagined as both “exciting” and “scary.”
• Open dialogue appears pivotal; where it exists, both generations shift from unsafe to safe uncertainty, generating actionable plans (supported flats, skills training).

Integration with Existing Theory

Mason’s Safe/Unsafe Uncertainty: families oscillate along this continuum; professional intervention can scaffold movement toward “safe” zones.
Perpetual Parent & Eternal Child: many parents shield offspring from external care, reinforcing dependency; yet this strategy also protects parents’ identity and purpose.
Caregiving Stress-Appraisal Framework: positive reappraisal (Sub-theme 4) buffers burden; lack of support (Sub-theme 3) amplifies stress.

Clinical and Policy Implications

• Proactive, lifespan-oriented future-planning reviews should be embedded in service protocols; waiting until crisis magnifies psychological trauma and risks inappropriate placements.
• Family-centred systemic interventions (e.g., multi-family groups, narrative or solution-focused therapy) could facilitate open future-talk, harnessing safe uncertainty.
• Re-building trust: professionals must acknowledge historical service failures and collaborate to co-design flexible support packages.
• Tailored psychosocial programmes for ageing carers (stress management, peer support) may prolong their well-being and caregiving capacity, delaying or smoothing transitions.
• Resource mapping and transparent communication about funding realities help families parse feasible versus aspirational options.

Strengths and Limitations of the Study

Strengths: inclusion of father voices; direct engagement with adults with ID; rich idiographic data; thematic transparency.
Limitations: small, homogeneous sample (all White British; all connected to services); single interview per participant may have limited depth; potential gatekeeper bias in selecting “capable” ID participants; findings claim theoretical sufficiency rather than saturation.

Future Research Directions

Cross-cultural replication to evaluate influence of ethnicity and cultural norms on caregiving and future planning.
Longitudinal designs tracking families’ movement along the uncertainty continuum and documenting outcomes of different planning trajectories.
Ethnographic or participatory methods enabling sustained rapport with adults with ID, particularly those with communication impairments.
Comparative studies of families who have successfully transitioned adult children out of the parental home, elucidating facilitators and barriers.

Ethical Considerations

• Equal status accorded to adults with ID challenges traditional paternalism; assent and informed consent facilitated via easy-read materials.
• Potential emotional distress mitigated through opt-out rights and post-interview debriefing.
• Reflexivity acknowledged researcher positionality, guarding against interpretive over-reach.

Conclusion

Families headed by ageing parent carers are engaged in an ongoing balancing act: they tolerate uncertainty by combining day-to-day coping, meaning-making and selective foresight. The quality of informal and formal supports, and the degree of open communication, determine whether uncertainty feels “safe” and generative or “unsafe” and paralysing. Importantly, when given space to speak, adults with ID articulate nuanced hopes—sometimes aligned with, sometimes diverging from, parental expectations. Services that respect these voices, rebuild trust, and scaffold future planning can mitigate crises and promote dignified, self-determined lives for both generations.

Key Numerical References (LaTeX Format)

• Sample size n = 12 (parents n = 9, adults with ID n = 3).
• Parent age range 65 \leq age \leq 85, M{age} = 76. • Adult-child age range 38 \leq age \leq 57, M{age} = 45.
• Estimated UK prevalence of adults with ID living with >70-year-old carers \approx 29\,000.

Selected Reference List (abridged)

Braun V. & Clarke V. (2006). Qualitative Research in Psychology, 3, 77–101.
Charmaz K. (2006). Constructing Grounded Theory. Sage.
Dallos R. & Draper R. (2010). An Introduction to Family Therapy (3rd ed.).
Mason B. (1993). Human Systems, 4, 189–200.
Pryce L. et al. (2017). Journal of Applied Research in Intellectual Disabilities, 30, 84–96.

Background and Rationale

Life expectancy has increased for people with intellectual disabilities (ID), leading to more adults with ID co-residing with aging parent-carers. This demographic shift burdens parents, increases crisis placement risks, often lacks explicit future plans, marginalizes adults with ID in planning, and highlights reactive service systems. Caregiving is a mixed experience of stress and purpose, influenced by social support and the child's needs. Despite anxiety, many families avoid concrete planning due to fear of external care quality, emotional dependence, and the perceived purpose caregiving provides. Siblings are often tacitly nominated, and adults with ID rarely consulted. This study explores both parent and adult-child perspectives.

Key Concepts and Definitions

• Intellectual disability (ID): significant limitations in intellectual functioning and adaptive behaviour, originating before age 18.
• Parent carer: a parent providing substantial daily support to an adult child with ID.
• Tolerating uncertainty: families managing anxieties about an unpredictable future.
• Safe vs. unsafe uncertainty (Mason, 1993; Dallos & Draper, 2010): a continuum from curious, flexible planning (safe) to feeling overwhelmed and paralysed (unsafe).
• Perpetual parent / eternal child (Todd & Shearn, 1996): parents remaining lifelong carers, viewing adult children as permanently dependent and limiting autonomy.

Study Aims

Detail how aging parents and adults with ID perceive the future.
Highlight convergences and divergences between their views.
Provide actionable knowledge for services to support proactive planning and prevent crises.

Methodology

Design

Utilized Braun & Clarke’s (2006) reflexive thematic analysis, with grounded-theory tools (constant comparison, memo-writing) shaping data collection. Parent and adult-child transcripts were analyzed together, giving equal epistemic status to adults with ID. Ethical approval was secured.

Participants

Purposive sampling yielded n = 12 individuals from six family units: n = 9 older parents (6 mothers, 3 fathers; M{age} = 76) and n = 3 adults with ID (2 males, 1 female; M{age} = 45), all with mild ID and assessed for interview capacity.

Data Collection

Separate home-based semi-structured interviews (parents \approx 60 min; adults with ID \approx 30 min) covered caregiving, supports, and future hopes/fears, using visual aids. All interviews were audio-recorded and transcribed.

Data Analysis

Involved initial open coding, focused coding, theme development through memo-writing and constant comparison, and researcher reflexivity. Theoretical sufficiency was acknowledged given the small sample.

Contextual Family Portraits (Vignettes)

Six family vignettes provided detailed background, illustrating the diverse caregiving situations and challenges, such as a parent with memory problems, a child with autism, or a parent undergoing cancer treatment.

Results: Thematic Framework

Overarching Theme – “Tolerating Uncertainty”

A continuous process where families manage anxiety regarding parental health, mortality, and future care. It's often passive but becomes active during crises.

Sub-themes:

Accepting the Parenting Role: Initial grief replaced by reframing caregiving as a “way of life,” with unconditional love facilitating role integration.
Facing Challenges: Daily unpredictability from the adult child’s condition (e.g., epilepsy, autism) and behavioral challenges (e.g., self-injury) increase emotional and practical burdens.
Being Supported / Being Isolated: Informal support helps, but formal services are seen as fragile. Service disappointments lead to social shrinkage and self-reliance.
Positive Meaning Making: Caregiving provides vicarious happiness, daily structure, and existential purpose, fostering psychological resilience through a burden-benefit dialectic.
Re-evaluating as Time Moves On: Parents acknowledge finite capacity due to health decline; adults with ID also self-reflect, varying in readiness for transition.
Managing Future Thinking: Ranges from avoidance to proactive engagement. Parents fear diminished care quality. Adults with ID show ambivalence about independence. Open dialogue shifts families from “unsafe” to “safe” uncertainty.

Integration with Existing Theory

Study findings align with Mason’s Safe/Unsafe Uncertainty (professional intervention can promote “safe” zones), Perpetual Parent & Eternal Child (parents reinforce dependency while protecting their identity), and the Caregiving Stress-Appraisal Framework (positive reappraisal buffers stress; lack of support amplifies it).

Clinical and Policy Implications

Proactive, lifespan-oriented future-planning reviews should be standard. Family-centred systemic interventions (e.g., multi-family groups) can foster open dialogue. Trust-building professionals should co-design flexible support. Tailored psychosocial programs for carers may prolong well-being, and transparent communication about resources is vital.

Strengths and Limitations of the Study

Strengths: Inclusion of fathers and direct engagement with adults with ID, rich idiographic data, and thematic transparency.
Limitations: Small, homogeneous sample (all White British, linked to services); single interviews; potential gatekeeper bias; theoretical sufficiency claimed, not saturation.

Future Research Directions

Cross-cultural replication to evaluate ethnic and cultural influences.
Longitudinal designs to track uncertainty continuum movement and planning outcomes.
Ethnographic/participatory methods for enhanced rapport with adults with ID.
Comparative studies of successful transitions from parental home to identify facilitators and barriers.

Ethical Considerations

Equal status for adults with ID challenged paternalism, with assent/informed consent via easy-read materials. Emotional distress was mitigated by opt-out rights and debriefing. Reflexivity ensured methodological rigor.

Conclusion

Families with aging parent carers tolerate uncertainty through daily coping, meaning-making, and foresight. Effective informal/formal supports and open communication determine whether this uncertainty is “safe” or “paralysing.” Adults with ID articulate nuanced hopes. Services that respect these voices, rebuild trust, and scaffold future planning can mitigate crises and promote dignified lives for both generations.