PARTICIPATION IN NEEDS ASSESSMENT OF OLDER PEOPLE PRIOR TO PUBLIC HOME HELP Older persons', their family members', and assessing home help officers' experiences

Abstract: Aim: The overall aim of this thesis was to illuminate older persons' experience of becoming in need of public home help and their family members' experience of this situation. Further, the aim was to illuminate experiences of participation in the needs assessment process of older people and influence on decisions about public home help from the perspective of older needs-assessed persons, their family members, assessing home help officers and external home help officers.

Method: A qualitative hermeneutic approach and triangulation of sources was used as the methodological strategy. A purposive sample of older persons aged 75 and over, who had gone through the needs assessment process and lived in their ordinary homes, was selected consecutively, retrospectively from home help officers' files on decisions about public home help in two municipalities. Data were collected about the same topic - older needs-assessed persons and family members' participation in the needs assessment, through personal interviews with those involved, the older needs-assessed persons (n=28, age 75-96, Paper I-II), family members (n=27, age 42-93, Paper III) the assessing home help officers (n=5, age 29-50, 26 interviews), and an additional focus group interview with home help officers (n=9) (Paper IV).

Analysis: A qualitative content analysis was used (Paper I-IV) to interpret concrete and abstract meaning content, the latter inspired by hermeneutics to convey the meaning of the utterance, which in each study was interpreted as one overarching category that encompassed principal categories and sub-categories.

Findings: To the older persons becoming in need of public home help it meant "Experiencing discontinuity in life as a whole - the countdown has begun" (Paper I). Further, their participation and influence on decisions about public home help when undergoing needs assessment and receiving public home help meant "Having to be satisfied, adjust, and walk a fine line when balancing between needs and available help" (Paper II). To family members with an older next of kin becoming in need of public home help, their participation in the needs assessment procedure and the decisions about their next of kin's public home help meant "Feeling disconfirmed or confirmed in the needs assessment, when feeling pressed by the responsibility and struggling to balance the needs of the family" (Paper III). To home help officers, the participation of older help recipients and family members in the needs assessment procedure and the decisions made about public home help meant "Having to establish boundaries towards family influence and at the same time use them as a resource" (Paper IV). These findings seem to correspond to and provide an understanding of the meaning of older needs-assessed persons' and family members' participation in the needs assessment as a whole.

Conclusion: The needs assessment marked a turning point that can be understood and framed as a larger distressing life transition for both older persons and family members, which could cause difficulties for adequate participation in the needs assessment. Both older persons and family members experienced the needs assessment as difficult to comprehend, they lacked knowledge regarding aims, procedures, and rights and had not perceived what was the actual needs assessment. The older persons' actual ability to participate and communicate varied, and family members could be necessary as representatives, which created a moral conflict for the home help officers. Home help officers' attitudes towards their professional responsibility seemed to influence their management of older persons' and family members' participation. The needs assessment focused solely on the older individual's present situation and mainly physical and practical disabilities and needs, while mental, existential, social and medical needs tended to be neglected. The older persons and family members had little opportunity to participate in the process or to influence the decisions. Older persons felt that help offered in accordance with municipal guidelines had to be accepted, and family members felt mainly disconfirmed in the needs assessment encounter. The forms of the needs assessment and organisational conditions must be reviewed to promote the sense of coherence and participation of those involved.